Chronic Fatigue Syndrome

The CFS – Chronic Fatigue Syndrome webpage

for CFS/Physical – where the main aspect is the abnormal physiological response to physical exertion ©

The research project of 1982-4 which proved a physical basis for the fatigue can be seen here My publications, and newspaper reports about that research can be seen here, and my talks here.
My new essay on the symptoms, cause, diagnosis and treatment of CFS is here.

My webpage which contains a brief summary of the treatment methods which I developed between 1975 and 1983, and which are now evident all around the world today, can be seen here.

See also the Worlds best CFS research here.

Tens of thousands of South Australians would have heard about my chronic fatigue research between 1982 and1983, and since, when I was interviewed on radio, or spoke on talk back radio programs, or from my letters and articles published in local and state newspapers or journals, and hundreds of thousands of people would have learnt about it all over Australia, and overseas,from newspaper reports and journal articles published in interstate and internationally based, and or, internationally distributed journals, and if anyone decided to copy my methods and claim them to be their own, it would have been relatively easy to find out more, and it has recently become apparent to me, in 2012, that it is what has happened. See a summary of my publications here, and my talks

To compound that aspect, two anonymous editors managed to convince other editors that I was a worthless, non-notable, fringy kook who only participated as a sports technician in one small, insignificant research project, and whose ideas were nonsense and rubbish, and arranged for me to be banned from Wikipedia.

The simple fact is that I solved a major problem related to exercise and chronic fatigue, and anyone who tried to use different methods in the future would not succeed.

I have had the symptoms of chronic fatigue for 38 years, since 1975, and wrote my observations, theories, and methods of managing the fatigue in the first four years. There is no cure, but, because of the accuracy of my methods, I haven’t had severe fatigue since, and I don’t take pills.

See a current report by Mike Wennergren who describes his own chronic fatigue on 18-8-13, and also comments on an economist named Roger King who estimates that he spent $8000 on medical bills in one year and calculates that the illness has cost him more than $1,6 million, including income he’s been forced to forgo. See here

Needless to say I could have saved him a lot of time, trouble, and money.

Wennergren now does one of the things that I knew 37 years ago, and recommended in my 1982 research project – he used to participate in triathlons, but now has to limit his activities carefully and rest several times during the day. See my report here.

I can also say that it doesn’t matter whether you are educated or uneducated, rich or poor, you can still get the chronic fatigue syndrome, and money doesn’t make it go away, but it would improve the patients quality of life.

What is the chronic fatigue syndrome

The word syndrome means “a set of symptoms occurring in the same patient“, and the chronic fatigue syndrome includes chronic persistent or recurring tiredness, and physical fatigue involving a reduced capacity for exertion and an abnormal response to exercise, particularly high levels of exertion.

Those basic symptoms are combined with an occasionally sense of faintness, which are all due to the abnormal tendency for the blood to pool in the lower part of the body instead of being distributed evenly to the upper part, and particularly the brain. Another characteristic symptom is a very specific form of breathlessness which is not seen in any other illness and involves an occasional feeling as if it is difficult to get a full breath, and where the patients will be seen taking one or more forced deep gasps for breath which are otherwise described as abnormal sighs.

Although there have been more than 100 different labels given for the illness, and although there have been many quite ridiculous attempts to convince the public that it is a complicated problem, and a “a disease by exclusion” (which means that after every other illness is considered it is the only one left), nevertheless, exactly the same basic set of symptoms are seen in the chronic fatigue syndrome, myalgic encephalomyelitis, Orthostatic intolerance, Da Costa’s syndrome, the Effort syndrome, Costochondritis, and many more.

People who are trying to convince the public that all of those problems are completely different have either not studied the history of research properly or are, for one reason or another, telling the public lies. e.g. see here.

Many patients with chronic fatigue are now being treated with the appropriate exercise training, within the individuals limits, and the lifestyle modifications which I defined in 1982. Those principles have become the basic templates for all exercise treatments for chronic fatigue since, including PACING and Graded Exercise Therapy. See here.

Methods of diagnosis

The main feature which distinguishes the various types of chronic fatigue syndrome from normal health is the abnormal physical and physiological response to physical exertion.

Therefore, where that feature exists, it doesn’t matter what label is used, it is still the main feature, of the main type of chronic fatigue syndrome. See here

The methods of diagnosis which I recommended in 1976-82 were exercise testing here and here, and graphs and measurements and all wired up and aerobic capacity and tilt table tests here, and more recently the DATT method.

See a modern report on diagnosis provided by Tom Kindlon on Twitter on 12-10-13 here.

it doesn’t matter if the chronic fatigue syndrome is caused by anxiety, a virus, or poor posture, or whether it is genetic and the person is born with it, because after it has been acquired it is a physical condition, and anyone who argues against that fact is wasting their time because there is already a massive amount of scientific evidence to prove it, and more will come in the future. Diagnosis and treatment needs to be based on that fact.

I started arguing against people who argued that it was a psychological disorder 35 years ago and I have been winning since day 1.

The dilemma that all chronic fatigue patients have to face

A dilemma is a situation in which there are only two choices and neither is going to solve the problem properly

Chronic fatigue syndrome is a real physical ailment which involves real physical limitations that indicate a reduced capacity for the normal activities of life. However unscrupulous researchers shed doubt on that scientifically proven fact and argue that it is an undetectable, and therefore mental illness.

This leaves the patient in a position where they have to follow the basic principle of choosing the lesser of two evils.

Namely, they restrict their activities, in which case they are labeled as lazy or mentally ill. Their second choice is to try to keep up the pace of a normal lifestyle and soon become exhausted to the extent that they can’t do anything even if they want to, in which case the are going to be labeled as faking illness.

The dilemma is that it doesn’t matter what choice they make because they are either going to be labeled as lazy or mentally ill . . . or . . . faking or mentally ill.

The best thing to do in that situation is to stay within limits and remain reasonably healthy all the time, and just avoid, ignore, or tolerate the criticism.

When Pavlov’s dogs were experimentally placed in situations where they had to distinguish between circles and slightly oval shapes to get a reward, they became frustrated and went mad, and the same thing happens to humans. Some unscrupulous researchers will then say . . . “look, we told you so, the patient is mentally disturbed, which proves that mental illness is causing the fatigue”.

Diagnostic Tests

My research method is a way of easily diagnosing CFS here.

See another way of easily and scientifically diagnosing the physical nature of the illness with tilt table tests. See here, and here, and here.

Comprehensive treatment for CFS

Many diseases have multiple causes, and require multiple methods to produce the most effective treatment, and that applies to the Chronic Fatigue Syndrome.

In my case I avoid situations which involve poor posture. I also have a healthy diet, and do a lot more exercise than most people, but always within my limits, so it mainly includes walking, and I don’t hurry or worry. I also lead a lifestyle which is moderate and avoids any undue demands on my time, or requires persistent or prolonged activity which is likely to have adverse effects, and participate in less demanding activities, which from trial and error experience, don’t cause problems.

How do you stay within your changing limits

Some people enquire about how to determine their limits and stay within them. It is not a matter of being mathematically precise but of knowing your approximate range of limits, and taking into account that they will often vary by some degree from day to day, and adjusting the limits accordingly. The easiest way to do that is to constantly stay below the level which is likely to cause fatigue. It is not as difficult as it seems because it is like driving a car where the speed limit is 60km per hour. If you are constantly driving at that speed you are likely to exceed it from time to time, but if you constantly drive at that level or lower you are unlikely to be booked for speeding.

Biographical science and mathematical science

When I began studying my own health problems in 1975 it was obvious to me that my own doctor didn’t understand them, and couldn’t explain them, and it soon became apparent to me that many of the world’s top researchers had based their ideas on reasonable but wrong assumptions. Others had dismissed the symptoms as trivial or imaginary, and were not doing any useful research at all, so if I didn’t do something to change the situation they would probably never solve the problem, at least not in my lifetime

I studied the symptoms myself by recording very detailed observations, and later described them in essays and submitted them to such places as the Australasian Nurses Journal for publication.

For example, one of the most popular ideas was that the symptom of breathlessness was due to anxiety, so I described how tight belts, tight shirts, and leaning toward a desk were compressing my lungs and restricting my breathing and contributing to the problem. That essay was called “To breath or not to breath – is that the question” and it was published in May 1978 page 5-6.

I considered that other researchers would then be able to start with a correct understanding, and find mathematical laboratory observations, and do x-ray and CAT scan studies which were equally as accurate, and which confirmed the correctness of my “biographical” science. (mathematical science and laboratory science would match biographical science).

There was also the general idea that the patients were unwilling to exercise because they were afraid of the normal symptoms of effort, and that it stemmed from the fact that they had never played sport, so they didn’t know the difference. However, I had played sport, and I did know that they were different, so I described them in great detail. I also researched and scientifically proved some of those differences myself, at the South Australasian Institute for Fitness Research and Training. See here.

Nevertheless some people have been trying to hinder the research, and shed doubt on it, and create confusion, or hide evidencet, and in that process would like the public to believe that I am an insignificant kook who is a mentally ill hypochondriac with an obsessive compulsive anxiety disorder and a morbid preoccupations with the trivial details of illness.

Their interpretation is ridiculous.

The economics and politics of research

Ever since World War 1 the military, governments, and major corporations have known that a person who develops chronic fatigue at the age of 20 will still have the problem at 60, and will eventually die of old age like everyone else.

They have known that it is a physical problem of some sort, and that there is no cure, and that each of the more than 50,000 soldiers who had the ailment in 1919 was entitled to financial support and compensation for the next 40 or more years of disability and unemployment amounting to trillions of dollars per year. However they don’t want to make those payments, so they have been doing everything possible to ignore, discredit, or hide the scientific proof of physical cause, and funding research programs to invent arguments that it is a mental illness involving trivial, imaginary, or fake symptoms which will cure by themselves with a few months or years of rest. They have therefore been able to avoid the trillions of dollars in expense.

Their arguments have included the idea that you can trust their own researchers because they are highly qualified, but you can’t trust what patients say because their self-reports aren’t reliable, and you can’t trust the research studies which haven’t been accepted in journals, and that even if proof is provided it can’t be trusted unless many different researchers verified the same results in several different reliable sources.

Essentially they have been inventing all sorts of excuses for not accepting the obvious fact that millions of people have the chronic fatigue syndrome, and that they are all entitled to compensation, and that the vast majority of them have been denied their genuine entitlements for the sole purpose of saving corporations, the military, and governments the expense.

Patients with chronic fatigue syndrome have an incurable ailment which is regarded by many people as a financial burden to society which it is not prepared top bare, so it funds the “all in the mind” theories to make it “disappear”along with the responsibility for it in a manner that applies to most other illnesses. See here.

The changes in attitude since my research project

When I started a research project in the early 1980’s there was the popular view that the symptom of abnormal fatigue was trivial, imaginary, or was due to laziness, or lack of exercise, or the fear of exercise, or anxiety, or just excessive concern about the normal symptoms of fatigue.

By the time the project was completed I knew that I had scientifically proven that they symptoms were real and physical.

I therefore knew that there would have to be a major change in attitude toward the problem, but I didn’t know how that would happen.

However, as years went by, I became aware that the label of Da Costa’s syndrome (where the main symptom is fatigue) went into disuse, and was replaced by the more common use of the label of the “Chronic fatigue syndrome”.

It has also become obvious to me that a lot of people resent the fact that a patient made this discovery, and that they don’t want to acknowledge that my research was responsible for the change in labeling. They don’t even want the rest of the world to know that I exist, and they argue that Da Costa’s syndrome is not even related to the chronic fatigue syndrome. e.g. See here.

You can read my research project below, and judge for yourself. My critics don’t want you to read or know anything, but just to thoughtlessly assume that the changes came about for some gradual or obscure reason.

The Research Project

South Australian Institute For Fitness Research And Training (1982-1983)
Study co-ordinator: M.A.Banfield

The South Australian Institute for Fitness Research and Training was based in MacKinnon Parade North Adelaide in a two story building with an outside quadrangle for exercise. The ground floor consisted of change rooms, etc, and the top floor housed the reception area, office, and managers rooms, and the medical examination room for patients and diagnostic equipment such as ergometric cycles and cardiographs. The building was across the road from the University of Adelaide sports ground which was also used as an exercise park. The Institute also had venues at the Magil (Teachers College) campus of the South Australiaian College of Advanced Education, and the St.Bernard’s Recreation Centre, which was a large basketball stadium in the northern eastern suburbs. They had been conducting research programmes to assess the effects of exercise for several years on thousands of patients before I became involved and had programmes specifically designed for the general public and for people with obesity, asthma, arthritis, and heart disease etc.

I first participated in the programme for the general public in 1975 and later designed a programme for people with chronic fatigue starting in 1982.

In order to run such a programme which involved human volunteers the design had to meet the requirements of ethics that met government and University science standards.

I told the head of the Institute that I didn’t wish to organise the study because I wasn’t medically qualified, but when he asked his cardiologists if they would do it they told him that they were too busy on other projects, so he persuaded me to do it myself. In order to meet the ethics standards I was required to establish a committee of six which consisted of the appropriate medically qualified members. That was achieved by the head of the Institute being part of it, and he arranged for one of the cardiologists to be on the committee, and there was myself which made three. He gave me the name of some medically qualified professionals who were interested in doing research and asked me to phone them and ask them if they were interested. Two of them were, with one being a general practitioner, and the other being a psychiatrist. The sixth member was chosen for the task of being field coach because of his extensive experience in previous fitness research programmes, and his appreciation of the different requirements that were determined by which type of ailment was being studied and treated. The programme also had to get official support so I was given the name of a politician to contact, and was required to give him an outline of the programme etc. He provided a token payment to signify that approval. The costs of the course were paid by each volunteer, but because it was officially approved, they were reimbursed the full amount by the government medical fund of that time. One of the later meetings was also attended by a medical journalist from the Adelaide “News” which was the main evening newspaper covering all of South Australia. That journalist had been kept up-to-date with developments for about two years, and wrote the newspaper articles that were the prime source of volunteers. Other volunteers responded to letters sent to general practitioners who were asked the inform the relevant patients of the course.

The objectives of the programme;

To determine the physical fitness levels of patients with persistent fatigue, and whether or not it was possible to design a fitness programme which was acceptable to such patients, and then to determine the effect of such training on fitness levels. The objective was also to compare the fitness levels of patients with persistent fatigue with that of healthy individuals.

The factor which motivated me to run this project was the research literature which indicated that most, if not all previous programmes were unsuccessful in retaining participants for long enough to get meaningful results. The general view was that “such patients could not or would not train”.

I had participated in such a course for nine months five years earlier, and was therefore confident that I could design a programme which would be acceptable to other people with similar problems.

During that time part of the training involved walking or jogging around a 400 metre oval. In general terms I would be jogging 50 yards behind the tailenders as the front runners were overtaking me. The other participants were simply trying to improve their fitness, or were exercising as a treatment for obesity, asthma, arthritis, or heart disease. On one occasion, as two fifty year old men were out lapping me, one turned to the other and said loudly enough for me to hear “that is typical of the youth of today: they are unfit because they are too lazy to exercise”. Those men did not know that I had been a gymnastics instructor for five years, and they both seemed to me to be training to treat smoking induced lung or heart problems.

I had to take those things into consideration because many people would drop out of a course due to the humiliation of coming last, and the ridicule associated with it.

I also considered that most training courses had instructors enthusiastically encouraging participants to constantly improve their training levels from week to week, and that such an approach would prompt fatigued patients to exceed their limits and start experiencing the types of distressing symptoms which would make them drop out of the course immediately.

Therefore I established the following protocols for the course.

Firstly, people with persistent fatigue would need to train in an entirely separate group, so that they all had a reasonable understanding of each others ailment.

The participants were to be informed that their objective was to train at their own pace of walking or jogging, and that they were to improve their pace according to the way they felt, and not because they were required to, and that the programme was not a contest or a race, but an exercise of staying in training for as long as possible, or for as long as their health continued to improve.

The participants were advised that the cause of the fatigue was not known, and that those who were running faster were to recognise the possible difficulties of those going slow and not be critical or judgmental about it, and the slower walkers or joggers were advised to ignore any negative comments from other members of the group, or outsiders, and to continue training at their own pace regardless.

At the outset the general view in the research literature was that:

There was no scientific evidence of a physical or measurable basis for persistent fatigue.

That patients who complained about persistent fatigue were complaining excessively about normal fatigue.

That such patients were reluctant to exercise because:

1. of a fear of exercise

2. they were too lazy to train

3. they had no desire or motivation to get well.

The Data from this Fitness Training programme indicated that:

80 people applied for the course and were tested as far as my recollections can determine, but data was not recorded for the last groups. Of the initial 3 groups data was compiled for 26 participants. Of those the measurements were adjusted according to age, body weight, and gender, and 15 were below average, 8 were average, and 2 were above average aerobic capacity. Although only 9 completed 3 months training, and only five completed 6 months training, that is not unusual for any group of patients. Groups of patients with asthma, obesity, or arthritis etc, had similar drop out rates.

The fact that 1 woman and 4 men with abnormally low aerobic capacity continued to train for at least 2 hours per night, twice per week, for at least 6 months is evidence that the former views were invalid. i.e. Patients with severe fatigue were motivated to regain their health, they were not afraid of exercise. and they were prepared to train in an attempt to achieve their objective.

It is interesting to note that of the nine people who trained, and continued for at least 3 months, only one started with above average fitness, and the other eight started out low, or very low, indicating that those with the most severe fatigue were the ones with the highest motivation to regain their former health.

The conclusion from the study was that there are a group of patients with persistent fatigue who have a measurable physical condition that responds favorably, to some extent, from an appropriately designed exercise programme. M.B.

The John Maddox Prize – who should be awarded it

When I began reading the medical literature to solve my own health problems in 1975 it soon became obvious that doctors did not understand the difference between normal tiredness, and the abnormal tiredness of chronic fatiguen, and that they didn’t know the difference between the normal response to exercise and the abnormal response experienced in chronic fatigue.

They also didn’t know that many different and varied factors induced and aggravated the symptoms, or that they varied from minute to minute, or day to day, or month to month etc, and that they would never know until an intelligent patient studied those aspects and described them in accurate and precise detail.

It was also obvious to me that any patient who did describe their symptoms in that manner would be diagnosed as a mentally ill hypochondriac who was morbidly preoccupied with the minor aspects of trivial illness, and that they would soon become discouraged from that process and give up before they or anyone else learnt anything useful.

I therefore decided that the best thing to do was to describe and record such information, and develop my own ideas on the cause, and how to relieve, manage, or cure the condition. When I started getting those ideas published it was apparent that anyone who saw the details would be better informed, but could also copy and use my ideas without giving me the credit.

I noticed that happening when I was providing information to a page about Da Costa’s syndrome for Wikipedia in 2008. Two editors in particular, had placed me on a watchlist and were following every detail of everything I wrote on every page, and were trying to criticise and delete every word I wrote, and all existence of me or my published articles, books, and website, and furtively using, or transferring the information to other pages in that encyclopedia. See here and here.

However, many of my essays were published in the Austalasian Nurses Journal in the late 1970’s, and I was invited to design and co-ordinate a research study into chronic fatigue and exercise in 1982 at the South Australian Institute for Fitness Research and Training here. I was able to provide scientific proof that the symptoms were physical and not mental. I then knew that it would be impossible for anyone to argue that the symptoms were “all in the mind” in the future.

By the late 1980’s I noticed news reports which announced that a brand new condition called the chronic fatigue syndrome was being investigated. It was obvious to me that it was just a new label for Da Costa’s syndrome.

I also published a book between 1993 & 2000 giving detailed descriptions of symptoms, and a website soon after, with similar information, and since I have been banned from Wikipedia in January 2009, I have been criticising my two critics and made it more than obvious that the ailment is physical despite their rigorous attempts to argue the opposite. See my report here.

More recently I have seen a report about Simon Wessely being granted the John Maddox Prize for his research into chronic fatigue and exercise which he started in 1987, only three years after I did my research.

I am not in a position to say if he gained his ideas about chronic fatigue and exercise from me, but my ideas were so important that they would have spread throughout the relevant research community of the world via the social grapevine. During that time he could have read, and followed my reports just as easily as my main Wikipedia critic did via a watchlist etc..

However,it doesn’t matter if there has been a breech of my copyright or not, because the first person to make scientific discoveries is the one who deserves the credit. See also my report on the cause and effect question here.

The John Maddox Prize awarded to Simon Wessely
See also a letter from Countess Mar to Simon Wessely here

The Lancet is one of the worlds foremost medical journals and on November the 12th 2012 it announced that psychiatrist Simon Wessely was one of the first winners of the John Maddox Prize. it is jointly funded by the journal Nature, and a non-profit organisation called Sense about Science, and the Kohn Foundation.

A report says that he began working with patients who had chronic fatigue in 1987 before it was called the chronic fatigue syndrome and that he has helped to define the condition. It also states that. . .

“Many people labeled the condition as non-existent and all in the mind of the patient, but Wessely took on the study of individuals with the CFS and documented the condition as both a physical and a neurological condition. In the process of providing research and clinical care, Professor Wessely received attacks, threats and deliberate distortion of his scientific publications. See here.

According to the Mayo clinic the main treatment is psychological counseling using cognitive behaviour to reduce anxiety and that “graded exercise therapy means exercise using a physical therapist to set up a program to gradually increase the intensity of the exercise so as not to fatigue the individual”

However, in 1975 I set about criticising the people who were saying that the problem was trivial and all in the mind.

I also described how doctors were telling patients that their chest pain was not due to heart disease, but were not convincing the patient. I found out that the chest pain was due to inflammation between the ribs, and recommended that they stop telling patients what it wasn’t, and start telling what it was, and then they would be more believable, and more effective at relieving anxiety. I also interpolated that staying within exercise limits could prevent problems, and that similarly, the patient should be instructed on methods or reducing their general lifestyle to moderate levels.

I had studied psychology and knew that changing the way a person thinks to relieve anxiety was called “cognitive behavioural therapy” so to fit in with the jargon of the time I used that term to describe that method.

I also used my own judgment to do exercise to improve my own health in 1975, and between 1982 and 1984, designed and coordinated a research program which proved it’s effectiveness in other patients, which was three years before Simon Wessely started. See my summary of newspaper reports from three years earlier here.

The amount of adversity that I have had to deal with because I actually have the ailment, and the amount of hostile ridicule and bias, prejudice and criticism that I have had to deal with from critics has been a lot more than anything that Simon Wessely has ever had to deal with. e.g. See here

The Contrast in Wikipedia

When I joined Wikipedia in 2007, and an email correspondent provided a summary of The Posture Theory. It was about my theory on the physical cause of many illnesses which had previously been said to be “all in the mind”. It was deleted for various reasons. When I then started adding to the page about Da Costa’s syndrome I included some details from my research about chronic faitgue and exercise which I did between 1982-4, but two editors argued that no-one had agreed with any of my ideas, and that there was nothing in the “real” medical literature about it, They managed to convince other editors to delete all of the information and get me banned by arguing that I was a non-notable fringey kook who’se ideas were nonsense and crap. They replaced my version of the article with one which described the condition as an anxiety disorder, and attributed it to fear by referring to “cowardice” in battle, and put it in the category of somatoform disorders which are imaginary disorders.

They knew, and often told other editors, that I had that ailment, and were appealing to prejudice by inferring that I was a mentally ill person and a coward suffering from imaginary symptoms caused by anxiety.

See the information which I added about my research into exercise and chronic fatigue here and some of their comments and reasons for deleting it here.

By contrast Wikipedia has a page on the biography of psychiatirst Simon Wessely who they say had studied the relationship between chronic fatigue and exercise from 1987 onwards, and provided evidence that chronic fatigue patients had a real illness that was not “all in the mind”. They also reported that he had been awarded the John Maddox Prize. This is a quote from another website

“The award is the inaugural John Maddox Prize and it was awarded jointly to the British psychiatrist Professor Simon Wessely for his courage in facing opposition to his views about ME and Gulf War Syndrome.” See here

See also a YouTube video on the John Maddox Prize here.

That contrast is astonishing

Death threats and character assassination in controversial research

Simon Wessely reported that death threats were made against him about his research into chronic fatigue and exercise, however, it is an obvious area of controversy, and many people have been involved in character assassination to discredit my research into the same aspect. e.g. See reports about death threats against Wessely here and here, and criticism of my ideas here and here and here.

My 1984 research paper can be seen here.

Harmful effects reported from patients in Wessely’s graded exercise programs?

Note that my exercise plan included the principle that some patients may not be able to exercise, and should not be forced to do so, and that others may not be able to return to full health, but should try to improve their fitness by gradually increasing their fitness levels. However, I specified that they should only do so by staying within their limits. and Wessely’s virtually copied that idea with different wording, but it is quite likely that not all of his instructors would have understood the importance of that aspect, or may have been overly enthusiastic about getting quick results, rather than proceeding in the appropriate manner.

Also, I knew about the adverse effects of exceeding limits from personal experience, but Wessely may have had his doubts and arranged for some of his patients to be asked to ignore their symptoms to see what happened and confirm it for himself. High drop out rates, and the harmful effects in such circumstances are typically blamed on the patient.

See my report on the harmful effects graded exercise training and how to prevent it here

See a recent list of patients reporting the harmful affects of gradual exercise training programs where some say that their instructors told them to ignore their symptoms and keep increasing their levels of exercise regardless. The list was presented by Tom Kindlon in early January 2013 and can be seen here. See another article by the same author on the website of the Bulletin of the IACFS/ME here.

Another report on the harmful effects can be seen here.

See also a page about Graded Exercise Therapy in Wikipedia, which clearly states my methods, but doesn’t acknowledge me as the source, and refers to the harmful results in some cases, without mentioning my methods of preventing those problems here.

Other reasons why patients object to Wessely’s attitude and research

The following quote comes from a criticism by professor Malcolm Hooper about Wessely getting the John Maddox Prize.

“Psychiatrists of the “Wessely School” are lead advisors on “CFS/ME” to Government Departments and agencies of State. According to them, “CFS/ME” is a “functional somatic syndrome” (i.e. a behavioural disorder) in which medically unexplained fatigue is perpetuated by inappropriate illness beliefs, pervasive inactivity, membership of a self-help group and being in receipt of disability benefits (2). They assert that there are no physical signs of disease and there is no pathology causing the patients’ symptoms, and that patients are merely “hypervigilant” to “normal bodily sensations” (3). They insist that CFS/ME should be managed by behavioural interventions including “cognitive re-structuring” (ie. brain washing) and graded exercise therapy to “reverse” patients’ “mis-perceptions”. (end of quote) here

Such ridiculous dismissive nonsense and lies have been said about chronic fatigue patients by some researchers for over 100 years. Such offensive attitudes toward patients would be causing a lot more harm to people who already have a lot of problems.

Why there are cover ups and denials about the true nature and extent of the chronic fatigue syndrome

The following words are quoted from an article by Simon Wessely about chronic fatigue syndrome . . .

“Fatigue remains as elusive a human experience as ever. At the turn of the century fatigue was almost an obsession of doctors, scientists, writers and even politicians. The scientists believed they could measure it, the doctors they could treat it, the writers describe it, and the politicians prevent it’. Many confidently expected that fatigue could be eliminated from schools, factories, armies, and even society. That it had to be dealt with was not in doubt, since many authorities believed that if not checked, fatigue, the inevitable consequence of modern life in all its forms, would somehow destroy the nation’s health and its future. Perhaps only the writers achieved their objective2 . . . The inevitable result of this extraordinary interest in all things fatiguing was a reaction, as a sense of disillusionment set in. Scientists couldn’t measure it3, doctors couldn’t cure it4 and politicians couldn’t prevent it’. Fatigue illnesses, once the backbone of any self-respecting medical text, disappeared from the indexes5. Fatigue laboratories closed6, and interest dwindled.” (end of quote)

Reference: Simon Wessely (April 1992) “The measurement of fatigue in chronic fatigue syndrome“, Journal of the Royal Society of Medicine Volume 85 p.189-190.See here.

Note that although the article is called “The measurement of fatigue”. it actually only presents evidence that it couldn’t be measured.

It also gives my readers some indication of the predicament that I was in as a patient in 1975. Namely, nobody could understand it, diagnose it, or treat it properly, so I had to do it myself. Note also that i had to use old books, and old indexes to find some of the information which is not available in modern books.

The evidence also indicates that many people at the highest level of society are trying to erase the evidence, hide it, and deny it’s existence as a real physical ailment.

See also my report on how two unethical, unscrupulous, deceitful and anonymous Wikipedia editors are trying to hide the research history of chronic fatigue from the readers here and here.

A former name for the chronic fatigue syndrome was Da Costa’s syndrome. This is what one of my two Wikipedia critics said . . .

“It is “a vague 19th century syndrome, generally considered a psychosomatic anxiety disorder). It’s overall an unimportant article for Wikipedia, so we can’t justify investing several editors’ time and energy into turning it into a little gem of an article” (end of quote) here.

See how they also tried to argue that it was a rare condition here.

See more realistic ideas about how common chronic fatigue is in the community here.

Simon Wessely Knighted for his medical and CFS research?

(Note that my father, Allan Frank Banfield, was a president of the Edwardstown branch of the Australian Returned Servicemen’s League).

On 29th December 2012 it was announced that Simon Wessely had been knighted in the New Yeas Honour List for 2013, for his contributions to medicine in relation to the mental health of military personnel. See here and here.

Various other reports say that he has developed “new” measurements for CFS, and cognitive behavioural therapy methods, and graded exercise therapy, and has been helping veterans with post-war syndromes.

See my essay on the history of medicine which includes post war syndrome here.

He is also a psychiatrist and a member of the profession which created the “all in the mind” concept, and it has been reported that he has been interested in “medically unexplained symptoms” such as the chronic fatigue syndrome and myalgic encephalomyelitis, and arguing that their illness is “not” all in the mind. e.g. See here.

He is being given the credit for my research e.g See here and here.

I have been researching Da Costa’s syndrome, which has many causes. It occurs in children and is more common in women than men, and is also called the chronic fatigue syndrome. In military situations it has been interpreted as a post-war syndrome. I have developed the concepts of limiting exercise (and gradual improvement), and adjusting and limiting lifestyle (cognitive behavioural therapy), and I have been proving that undetectable illness is real and not imaginary, which can all be seen in my ebook called “The Posture Theory”. The sub-title is “The physical basis of undetectable illness“, and it covers a wide range of causes, illnesses, and concepts. here. See more details here.

I took all the risks

In 1975 I had health problems including severe fatigue, which nobody in the world knew how to treat effectively.

I therefore decided to take responsibility for my own health instead of relying on doctors. In that process I had to take risks and use trial and error methods which sometimes resulted in mistakes which I had to learn from quickly.

About 7 years later I was asked to design an exercise program for patients with chronic fatigue which was safe, and where there was no risk of mistakes.

Simon Wessely has obviously copied my methods, but not properly, and if, in some cases, there have been harmful effects, it would be because the patients exceeded their own limits. That is Wessely’s fault, not mine

He has been given an award for courage in science because some patients have made death threats against him???

Somebody should give me a chest big enough to pin a medal on.

Copies of the original typed draft, and an earlier newspaper report comparing the study with similar Russian measurements which didn’t include the effects of exercise.

Test Results

The Aerobic Capacity (physical fitness level) of volunteers with persistent fatigue

Copies of the original graphs

End of research paper written in 1984

More details from the 1982-4 research study

(In December 2012 I was asked to provide more information about my 1982-4 research design and methods, so I searched through my old files from thirty years ago and found the information below.)

The organisation of the study began in 1982, and the first period of training started on 17-1-1983. Each person trained twice per week on Mondays and Fridays for one hour each time, which included 20 minutes of light exercise and 20 minutes of walking or slow jogging, with the remaining time involving light recreational activities.

After the success of the first period, a second 12 week training program followed soon after.

My records show a list of 63 applicants for the project, with two late enquiries, making the total of 65. I had tried to phone each of them at that time and was able to have phone interviews with 48, which I have previously reported here.

At some stage the name of the program was changed to Project 24. It relates to the objective of having each person train for 24 weeks to determine the longer term affect of regular exercise on their aerobic capacity.

This was the description of Project 24 which I wrote, and which was typed by the Institutes typist, and presented with IFRT letterhead

Plagiarism and copyright theft

by Jargon change

The fact that some people have changed the names or invented new labels for my ideas and methods does not alter the fact that they have copied me, or stolen my ideas, or discovered facts or developed ideas after me. They are still my intellectual property and anyone who claims them to be their own idea, or a “New ” discovery, or somebody else’s idea is being either ignorant of the facts or criminal.

When I did my research the standard name fro the ailment was neurocirculatory asthenia, now it is called the chronic fatigue syndrome.

When I advised patients to exercise at their own level and rate, other people invented the label of PACING – run and do other things at your own pace.

When I discovered and scientifically proved that the ailment involved a reduced capacity for exercise, and that the wrong type or level of exercise would cause symptoms, other people called it “effort intolerance“.

When I advised people to exercise and do everything else within their own limits other people gave it the label of the “energy envelope“.

When I advised that patients be educated to learn the difference between their symptoms and those of more serious diseases, and how to adjust their activities I called it “Cognitive Behaviour Therapy“. Modern researchers are still calling it that.

It is obvious to me that they have read my essays, research papers, books, or website and decided to copy those ideas and create the illusion that they invented them as “New” ideas by giving the same discoveries and methods labels that appear to be new or different when in fact they are exactly the same as the ones I invented from 1976 onwards, and scientifically designed and proved in the 1982/3 research project. See here.

How they are getting away with the crime

Other methods which have been used to hide the crime have been to copy my ideas in research projects in other countries, and to do so without consulting me. or telling me, or thanking me, and without acknowledging the fact that I was the source.

Another way they are getting away with their crime is via two Wikipedia editors who were deleting all information about my research so that the only information available to the readers is that of the people who have copied me or come after.

They also described me as a an uneducated and unqualified person, to leave the way open for any person with standard qualification to get the credibility of developing the ideas.

Another process is that which can be summed up by Wikipedia’s policy of consensus where any group of people who out number me can create the illusion that I am at fault, and that I shouldn’t be accusing “respectable” people of such things.

My response

When I wrote my 1982 research paper I knew that I had produced and scientifically proved the value of the idea, and that it was a world first which all future researchers would have to use, otherwise their exercise projects would fail, and I knew that many people would be tempted to steal the idea by pretending it was their own, so I deliberately left out some details which would make the difference between good success, and problematic results. (which is why 51% of patients in the PACE trial are reporting that they were worse afterwards than before.

I didn’t know that my ideas were being stolen with any certainty until I joined Wikipedia in 2007, and then I decided to stop publishing my ideas which had been in development since 2005, I also stopped publishing anything new for a few years, but that was a waste of my time, so I started presenting them as mixed acronyms which would be completely impossible for anyone but me to interpret. See many examples on this page here.

However that presented another problem, namely that when people with CFS etc ask me what to do about their ailments I only tell them what has been published by me, and already stolen, and not latest and best methods.

If anyone wants to know how I solved those problems they will have to guarantee that I get the credit for my original research, and for anything else I tell them.

The copyright thieves have stolen what I have published as if it is an abandoned house after a bush fire, but they can’t steal anything else or even guess without making a hodgepodge of mistakes.

For example, a psychiatrist like Simon Wessely, and laboratory scientists who study with microscopes and x-rays want people to believe that they discovered what happens to people during life, from one decade to the next. The simple fact is that they can’t, and that I many decades ahead of them, in terms of experience alone.

My research is more efficient than most of the studies I read about, and I am willing to co-operate with anyone who wants to gain my knowledge, but I am not going to give it away to grubby thieves.

A modern video of CFS research since mine of 1982/3

The link to the 10 minute You tube video below was provided by Tom Kindlon on Twitter on 20-10-13

The video is about the GP conference: Future NHS services for CFS/ME patients in Northern Ireland dated 23-3-2013.

It includes a discussion on disability by Dr.William Weir, and a talk by Dr.Greg Purdie on The Scottish Good Practice Statement on ME-CFS, and Dr. Charles Shepherd on The Scene in Great Britain who talked about the need to get all existing and new researchers together to solve the problems, and Horace Reid who gave a talk on The Patients Perspective who mentioned that it was “not a good experience” and that as far back as 1996? the Royal College of General Practicioners, and psychiatrists and physicaians warned that CFS was not a psychiatric condition and that nearly all studies showed that between a quarter and a third patients with CFS did not fullfill any criteria for psychiatric disorder. He added that NICE take the same view. He said that CFS patients have capacity and that health care professionals should recognise that the person with the condtion should be in charge of the program. He also said that it was disappointing that so far the NHS has only come up with research providing patiens with coping strategies. That won’t do, he said, “What we want is a cure, and we won’t have a cure until we work out the pathology of the disease is, and that instead of putting all of the money into psychiatric research. a welcome change of direction at the medical research councilin research toward the cardiology and automic function

By viewing this video you can see the discussions amongst various researchers 30 years after I did my research.

Most of what is being discussed is about topics which I have already mentioned in my essays, books and website. There is nothing new about any of it.

The “coping skills” which they refer to were invented by me, because they didn’t exist until I started developing them, and there is the comment that patients now want “more” than coping skills, and that they want research into a “cure“.

They don’t mention that “coping skills” are a lot better than nothing.

They also discuss the funding of research projects, so it would be relevant to say that I organised my the 1982 research project myself and did it for free, as a volunteer, because the funding of my salary wasn’t available, and the institute couldn’t afford to pay me for a project that had not yet been proven.

I therefore proved it for free, and it is the one that the highly funded research scientists, institutes, and doctors use today without paying me a license fee.

They also talk about the modern idea that in many patients it has nothing to do with psychological factors as it was thought to be in the past.

They also talk about three levels of CFS from mild to severe, and comment that modern patients are still having difficulty getting pensions etc. They say that there is no way of diagnosing the problem, but my research clearly indicated that it can be determined by exercise tests, and I also recommended tilt table tests.
In 1975 I was told that there was nothing physically wrong with me, and to go back to work and work hard or be sacked, so I had to resign without superannuation benefits etc.

I scientifically proved that it was physical, which is why all of the changes have happened since.

Most patients have got no idea of how lucky they are now compared to how bad it was before I started. See also here.

Note, that if they want all of the “existing” and “new” researchers to get together, they could send me an invitation, and I would be happy to be there..

The patients perception of fatigue and disability

One of the questions about chronic fatigue is whether or not the patients perception of fatigue is reliable or an exaggeration or normal symptoms.

To answer that question I looked at the scientific measurements of aerobic capacity in their medical files and placed each person in order of fitness.

I then phoned the instructor and asked him to tell me who was running in first place on the training track, and then who was coming second through to last.

He did not have access to the records and did not know the details.

However, the person who he reported as running first had the highest aerobic capacity, and all of them were running in the exact order of the scientific results, and the person who was coming last had the lowest.

They were perceiving their capacity and fatigue with 100% scientific accuracy in a situation where it was impossible to fake.

See also a description of the scientific methods of measuring fitness in ways that cannot be faked here and here.

Terminology and Newspaper Reports

One of my tasks as research co-ordinator was to have some articles published in newspapers to invite

volunteers to join the project. I arranged that by meeting Diane Beer who was a medical journalist for the Adelaide “News” which circulated throughout South Australia.

During our discussions I needed to identify the nature of the ailment being studied so I described the chest pains, breathlessness, and fatigue, with specific reference to abnormal tiredness, or more particularly problems with physical exertion.

The term neurasthenia had been in common use for about 100 years, but I knew it as Da Costa’s syndrome, and when I was studying the condition I was using research journals which most commonly referred to it as neurocirculatory asthenia.

For the purposes of the newspaper article the term ‘neurasthenia’ was chosen.

I also explained that many of the patients were worried about their symptoms or became depressed because of the limitations to their lifestyle that was imposed by their persistent fatigue, and later mentioned the findings of the interviews with examples of participants who first noticed their fatigue after a viral illness, a prolonged physically exhausting event, or an emotional trauma, so those factors were included in some of the news reports.

I reported the results of each successful three monthly programme so that further articles could be written to invite more participants, and provided the scientific measurements which established that the fatigue was confirmed as a real physical and measurable ailment.

The journalist was required to verify all of those findings with the head of the Institute before publishing the articles.

When I had accomplished the task I had set out to achieve I decided to leave the programme.

A few years later I became aware of comments in the media, particularly radio, about a supposedly brand new ailment called the “Chronic Fatigue Syndrome”, but it was obviously just a new name for the same condition that had been around for hundreds of years with the label changing regularly. (the term CFS had been coined thirty years earlier, in the 1950’s, but didn’t get into general literature).

I later found that there had been more than 3000 research papers published on procedures called “Graded Exercise Training” and “Pacing”, which use exactly the same principles that I developed in the IFRT programme i.e.the participants gradually increase their level of exertion while staying within their own limits etc.

That method has been reported as being the most effective treatment according to surveys of chronic fatigue patients.

It might not appear to be particularly unusual except that most previous programs were dismissing the possibility that patients had physical limitations and were advising them that all they had to do was ignore their symptoms and run as fast as they could to get well. As soon as those people ran past their limits they would experience the distressing symptoms and drop out of the course, so someone needed to design an exercise regime with limits, which is why I was successful.

Some brief notes on criticism of this method

The purpose of doing the research project was to confirm what I already knew in a scientific manner that was proper, constructive and reliable

However, nobody can do anything new without attracting critics.

The first criticism is that the exercise project doesn’t provide a cure, but that does not take into account that there had never been a cure before anyway, and that the project was aimed at getting people to train for 12 weeks or more to determine if there were any benefits from such training. Nobody had been able to achieve that research objective before.

The second is that some patients in similar exercise programs since have reported adverse affects. However, that would not be due to any fault in my original design, but would be due to more recent studies where patients were required to join the course when they were not able to, or where they were required to exercise above their limits.

In my design the patients didn’t have to join if they thought that they couldn’t exercise, and those who did were free to slow down, stop, rest, or drop out at any time. They were not required to do anything that caused them problems.

See more details below.

A comment on research news about exercise and CFS in The Weekend Australian 26-3-2011

An article in the Australian by journalist Tony Kirby presents some information about modern research into the topic of PACING and whether or not it is useful as a treatment. There were some discussions about how to select patients and complaints that the exercise often resulted in problems.

I can give some information form my own experience to clarify some of those confusing issues.

First of all I was a gymnastics instructor who had been keen on sports for ten years prior to developing the problem of fatigue, so it was not due to laziness or the lack of exercise (which is also called ‘deconditioning’)

Secondly when I stayed within my exercise limits (which was slow walking at first, and some slow jogging later) then I was able to continue to improve without problems. However, when i participated in a relay, and squatted down with a medicine ball between my knees and hopped for about ten yards, my heart began to pound violently, and I fell to the ground gasping for breath. It took me about 20 minutes to recover, and i didn’t resume exercises again until a week later. I know from a matter of pure sense that most people who had that experience would leave such a course and never go back.

My fitness levels were measured at the start, and after three months of regular training, and at six months, and were based on scientific graphs of pulse rate over effort, so cannot be faked. The level went from minus 10 to plus 350kpm’s after three months and did not improve despite increasing the frequency and pace of exercise, so I had a physical limitation that was not going to get any better, and was still less than half normal.

The initial reading of minus 10 was because of the severity of my fatigue, and because the graph was drawn as a straight line instead of a curve at the base. Therefore my actual level was estimated at somewhat higher than that, as plus 10.

The plain fact was that it was obvious to me that I had physical limitations and didn’t need to get ‘scientific’ evidence of it. That is just what other people need to verify it.

The physical limitations meant that it was possible for me to exercise at a slow pace, and impossible to exceed my limits, which meant that I didn’t sprint or lift heavy weights.

I did the training purely because I thought it was a good idea, and not because doctors or anyone else suggested it, and my sole purpose was to get back to normal health, but it turned out that it was not possible.

Consequently I didn’t know that, according to some opinions, I was supposed to have a fear of exercise (nobody told me that), and I didn’t have a fear of exercise, and I didn’t have anyone else telling me what I ‘should’ or ‘should not’ be able to do, or force me to exercise past those limits. I just did what was sensible, practical, and possible.

It was obvious to me that I had a type of chronic fatigue which was directly related to a physical impairment which also reduced my capacity for exertion.

Five years later I was asked by the head of the research institute to design a fitness programme to scientifically study the effect of exercise on other people with chronic fatigue. The results from about a dozen people who continued to train, confirmed that other individuals had similar limitations in exercise capacity, and that they could participate in an exercise programme if it specified that they stayed within their own limits.

The fact that such limitations exist is also evident from a thorough search of the history of medical literature.

It surprises me that modern researchers don’t set exercise capacity as a specific criteria for one type of CFS and separate it from the other types, such as anxiety or depression etc.

Also some researchers expect that the exercise programme will cure every patient, but that is simply not possible. Nevertheless some improvement is beneficial.

They also may not be aware of the history of such research which shows that patients develop adverse symptoms as a result strenuous exertion, and that programs which are designed to encourage or force them to increase their level of fitness have failed repeatedly and had to be abandoned.

The people who designed such programs were at fault, because they didn’t understand the problem, and used the wrong exercise principles, and sometimes, rather than admit to it being due to that factor, they blamed the patient by referring to them dropping out and becoming “therapeutic failures”. (a clear case of victim blaming)

I also suspect that some researchers are deliberately organising the wrong types of exercise programs in order to create confusion.

This is a quote from another source which is relevant the process of producing research results that are deliberately rigged from the start . . . ‘the manufacture of scientific doubt’.

Note also that I gave the freelance newspaper reporter an account of many different causes of the ailment including excessive and prolonged exertion, viral infections, emotional factors, and unknown causes etc, and he, or the editors in charge of each newspaper picked which examples to use, and they generally focused on the ’emotional factors’ rather than the others.

One of many newspaper reports about my research can be seen at the top of this essay.

A copy of a newspaper article about a different study can be seen here

http://sacfs.asn.au/news/2011/03/03_28_putting_exercise_through_its_paces.htm

See also one which questions the value of exercise in chronic fatigue here

http://www.mja.com.au/public/issues/181_10_151104/letters_151104-6.html

See another report on these issues in The West Australian Newspaper’s internet page called “the west” at 12:05 p.m. on February 18th 2011 here http://au.news.yahoo.com/thewest/lifestyle/a/-/lifestyle/8868468/chronic-fatigue-treatment-questioned

The following words are quotes from The Australian newspaper about another more recent study

“ME-CFS is generally defined by persistent fatigue unrelated to, but often worsened by exertion, with other possible symptoms, for at least six months. The condition has long been controversial, in part because of disputes over whether its cause is physiological, psychological or both.”

“They then received one of three treatments on top of this.

The first, adaptive pacing therapy, generally preferred by ME-CFS patients groups, encourages patients to fit their activity level to their energy limits, identifying and so avoiding activities that worsen their symptoms.”

“Some patients fear the $8 million PACE trial, published in British medical journal The Lancet earlier this year, will put pressure on sufferers to be more physically active than is good for them, possibly causing relapse.”

“Critics warn that the PACE findings cannot be applied to all patients because they excluded severely affected housebound patients, and children.”

“Lloyd believes any harm comes from patients not sticking to their agreed plan.”

My comment – Useful information about the effects of exercise in chronic fatigue can be found in a book by Sir Thomas Lewis, which was published in 1919.

References:

Lewis, Sir Thomas] (1919). The Soldier’s Heart And The Effort Syndrome 2nd. edition. New York U.S.A.: Paul B. Hoebe

Lewis, T. (1918). “Observations upon prognosis, with special reference to a condition described as the “irritable heart of soldiers””. Lancet i (181-3)

and here Osler, Sir William (1918). “Graduated exercise in prognosis. Letter.”. Lancet (1): 231.

and by reading other references that I provided at the end of the article here

For more information on the history of CFS see here

A laboratory method of causing CFS

Every doctor sees hundreds of patients with this condition every year, so they know that it is real and physical, but for reasons of their own they like to give the impression that it is trivial, imaginary, or mental. I have therefore asked some of them this question . . . “Will you come into a laboratory with me, and let me subject you to some experiments which give you this ailment permanently?”. . . . They all say “No!” . . . When i ask them why they say that doing that type of experiment on humans is unethical. However, as you can appreciate, there is nothing particularly unethical about me doing something with the other persons permission. The real reason is that they know that the condition is real, and physical, and in many cases there is no cure, so it will interfere with their social, sporting, and occupational activities for the remainder of their lives. They will also have to deal with the prejudices of other people such as themselves, and they know how bad that will be.

Introduction to scientific exercise testing for CFS

In 1975 I was having extreme problems with my health which included a reduced capacity for exercise, however, I heard about an organisation called the South Australian Institute for Fitness Research and Training, where people could exercise under medical supervision, so I enrolled and began training twice a week. I was always coming last in walking or jogging sessions, and I knew that most people with my ailment would become embarrassed or discouraged, and drop out of the course, but I persisted. I had to stop training about a year later when I injured my knee, but in the meantime, my fitness level had improved, and although it was still considerably below normal, it had made the condition easier to manage.

In the meantime I learned that the name of the condition was Da Costa’s syndrome, which was also known as ‘neurocirculatory asthenia’. Some years later, while reading a medical book I noted a statement that it was not possible to get effective results from research studies on that subject because the patients ‘could not, or would not train‘. That statement was an indication of the general attitude that the patients did not actually have a physical impairment, but were simply suffering from a mental disorder which involved a ‘fear’ of exercise.

I therefore knew that the popular assumptions were wrong and that the symptoms were not due to a ‘fear’ of exercise.

A few years after that I met Clive Thelning, a friend of mine from my education at the South Australian Institute of Technology, and when asking the usual questions ‘what are you doing now?’ I mentioned that I had been studying the ailment and had a few ideas about it. He said that he actually knew Tony Sedgewick who was the head of the South Australian Institute for Research and Training, and recommended that I discuss my ideas with him.

I told him that the director of a research organistation would not be interested in talking to a person like myself who had no formal medical education, but he persuaded me to contact him anyway.

When I rang the head of the Institute he was quite enthusiastic about the ideas and invited me to attend a meeting where we discussed them in some detail. He said that he would talk to his medical research staff about the prospects of adding a training programme for ‘fatigued’ patients. A few weeks later we had another meeting where he explained that they were too busy with other projects, but then he invited me to co-ordinate the study.

When I advised him that I wasn’t healthy enough to do such a task, and that I wasn’t medically qualified anyway, he said that it wouldn’t matter, because his researchers would do all of the medical examinations and that one of his experienced trainers could run the actual exercise programmes to my specifications at their venues, and that all I would need to do would be collect and compile the results. I thought about his suggestion for several weeks and considered that if I didn’t do anything that this ‘solvable’ mystery, it would continue to be unsolved, so i designed the research programme and submitted it. He accepted the concept and, after some standard formalities were dealt with, the project started.

As each programme was successful another followed until about a dozen people had completed at least three months training. Hence I had demonstrated that if the programme was designed appropriately the patients ‘could’ and ‘would’ train, and I had proven that their reluctance was not due to a fear of exercise. I had also scientifically proven that they had a measurable physical impairment to their aerobic capacity which, in some cases, would benefit from exercise.

When the study increased from 20 patients to about fifty, and then eighty, the workload was affecting my health adversely so when I was asked to increase the study to 200 patients to ‘influence’ world opinion, I left the programme.

One of the medical editors of the Adelaide “News”, Diane Beer, had written several articles to recruit patients with persistent fatigue to the course, and a freelance journalist had reported the general findings in several major interstate newspapers, but I also wrote a research paper which included all of the detailed results and submitted it to two medical journals. However it was not accepted for publication, so I put it in my fiing cabinet.

Nevertheless, i knew that the success of such an important study would spread internationally through the research ‘grapevine’, and that attitudes would have to changeh, and within a few years the newspapers were reporting a ‘new‘ ailment called the ‘Chronic fatigue syndrom‘ – a medical condition where the main symptom was persistent problems with abnormal fatigue. I later found reports that the most effective treatment was an exercise programme where the patients trained within their own limits (instead of trying to keep up with healthy individuals).

Unfortunately there seems to be some individuals who resent me for doing that project, and they described it as insignificant and worthless, and tried to deny or hide the fact that it actually happened, and to portray me as some kind of ignorant fringy kook who has all sorts of mental and behavioural problems.

They have never met me and should just accept the facts and stop writing nonsense. if I was afraid of exercise I would not have volunteered for an exercise programme, and if my methods of exercising were not effective then other individuals would not have been able to train, and the same principles that i developed are regarded as the best methods available today – more than twenty five years later.

(In the past it was known that fear increases pulse rate, so it was argued that the fatigued patients were getting an abnormal increase in pulse rate during exercise because of a fear of exercise, rather than the exercise itself. The success of the programme that I designed showed that the patients were not afraid of exercise, and that the abnormal increase in pulse rate during exercise was due to an abnormal physiological response).

For my report on the controversial history of research into this area see here

For an independent overview of the modern CFS research see the video recordings of day one of a National Institute of Health conference here and day two here

See also the improved modern and better informed attitudes to CFS by the medical profession here

The cause according to patient interviews can be seen here

For my YouTube video on a breathing abnormality which is related to this topic see here http://www.youtube.com/watch?v=iGts2nfGtY0

Famous people who have had the Chronic fatigue syndrome

Over the past thirty years I have spoken from time to time with various people about the chronic fatigue syndrome. The usual responses were the same as those of any conversation with courtesy, interest, curiosity or keen interest, depending on the person.

However I would occasionally get an arrogant or even hostile response from people who have never met me, and would not have the slightest idea about what I am actually like, but they act as if they are somehow or other special, or haughty and lofty, and superior in all personal and psychological ways.

They give the impression that they think that they haven’t got the chronic fatigue syndrome because of their intellectual superiority or strength of character, and that if they did get it they would be able to get rid of it by simple will power.

They are deliberately blunt, rude, and dismissive to give the impression that they think that I am just an ignorant, uneducated, mentally inferior, stupid and lazy person who is so far beneath them that they can’t even be bothered talking to me. When I do make comments they say that I am wrong, or don’t know what I am talking about, or that the complicated aspects are beyond my supposedly feeble comprehension.

In response to such remarks I was curious to know if famous, highly respected people ever had this problem, and when I found them i mentioned them in my books or website.

The qualifications of such people, and their level of intelligence, and their strength of character, and respect in life are far higher than anyone who is ever likely to criticise me.

Michael Crawford had the chronic fatigue syndrome

The actor Michael Crawford, became famous for his role in the television series called “Some Mothers Do ‘Ave ‘Em”, and later for his roles in “Phantom of the Opera”. He then had a role in P.T.Barnum where he became very fit at the age of 38 because he had to learn and perform the circus skills such as the ‘flying trapeze’. He then performed in a musical called “Woman in White”, where he played the role of an obese man called Count Fosco, and had to wear a fat suit which made him sweat about a pint of fluid each time. As a result he gradually became more and more fatigued and he said that he then had some type of viral infection like the flu and developed the chronic fatigue syndrome. He said that his doctors were unable to explain the problem and the pills were not helping so he decided to leave the show and move to New Zealand to get some complete rest for about two years. He gradually regained his strength and sense of well-being, and returned to the stage to play in The Wizard of Oz.

Michael Crawford’s experience is further evidence that what I was saying thirty years ago was correct. Namely that the symptoms of chronic fatigue are real. They are not imaginary, or due to laziness, or the fear of exercise, or the lack of exercise, or from a bad breathing habit caused by the lack of exercise, or from a personality disorder. The condition is also not trivial, imaginary, or all in the mind, and it is not just normal tiredness, or an appeal for sympathy, and is not fake or due to malingering,

My main theory about the cause of fatigue is postural pressure on the air in the chest which impedes the upward flow of blood, and hence strains and weakens the blood vessels below the chest so that there is a weakness of blood flow which results in abnormal tiredness and exhaustion. Since then I have made many other suggestions and modifications to that idea. For example in 1871 J.M.Da Costa described how some soldiers collapsed and fell out of line while marching up and down hills and carrying heavy knapsacks for several weeks while being poorly fed and having viral infections. I have suggested that one possible cause is that they became dehydrated from the sweat and fever, and that prolonged reduced blood volume may have contributed to the weakness of their blood vessels and blood flow to produce the chronic fatigue.

The severity of their condition varied, where some recovered after a few months complete rest. However, most of them only experienced a moderate improvement in their health, and still had some problems with tiredness and fatigue twenty years later. A radio interview with Michael Crawford can be found here

The Countess of Mar

On October 11th 2010 the Countess of Mar delivered an address to the British Parliament in the House of Lords in which she reported that she had been diagnosed with ME (myalgic encephalomyelits) resulting from organophosphate poisoning. The speech was reproduced on the ME association website by Tony Britton on October 12th 2010 here.

The opening words to her speech were as follows . . .

“My Lords, the noble Baroness, Lady Gardner of Parkes, has chosen an appropriate moment to table this Question and I am grateful to her. I declare an interest, as I have a diagnosis-finally-of organophosphate poisoning leading to autonomic dysfunction. I am a patron of several charities and groups that represent the interests of patients with myalgic encephalomyelitis, also known as ME or CFS, but which I will call by its common abbreviation, ME. I am also chairman of Forward-ME.” (end of quote).

The following words are from her closing paragraph . . .

“I wish I had the solution to the suffering of people with ME. It seems that, no matter how often Ministers and senior officials confirm their acceptance of the seriousness of this condition, nothing will change until the culture both within and outside the NHS changes”. (end of quote) See here

BBC radio composer John Rutter

In 1975 I was told that there was nothing wrong with me physically, and that I should ignore the symptoms of fatigue etc, and just keep doing everything the same way I always had, and exercise and run faster and there would be no problems.

However, I had to start doing my own research and develop the methods of doing the exact opposite to that advice, by completely changing my lifestyle to get more rest, and to exercise at my own pace to avoid problems. Seven years later, in 1982, I was invited to do a research project where I scientifically proved the necessity of such changes , and the effectiveness of my method of treating it. The results were widely published throughout Australia in essays, and newspaper reports, and some of those essays would have been readily available overseas. They would have been seen and tested by researchers and patients who knew that the old methods were not effective.

I also had to manage my own health problems efficiently, so when I was asked to increase the study from 65 people to 200 I declined, and became involved in other activities and research in my own way, and with my own resources, at my own pace.

Some time later BBC radio composer John Riutter developed the chronic fatigue syndrome which he attributed to a previous chicken pox infection which soon left him incapable of working in the normal manner, but he was fortunate, because my ideas had brought about the official introduction of the name of the chronic fatigue syndrome, although it was still being ridiculed as just “Yuppie flu“. Nevertheless there were also support groups, which I assume started after my research made it practical, and John Rutter joined one of them and learned the importance of changing the way he did things from taking on commissions which require rushing to meet deadlines, to doing similar programs at his own rate.

He was treating his ailment the way I had described correctly several years earlier, and found that he recovered after seven years. Some people, but not all recover in that manner, but only if they follow my recommendations.

Needless to say, that if he hadn’t used those methods he would probably still be very ill today.

I found out about his experience on a Youtube video below which was made known to me through a comment by James David Chapman on Twitter on 15-10-12, who learned about it from a chronic fatigue patient who gave himself the ID of Constant F***ing Sh*t.

Other famous people from modern times who have had the chronic fatigue syndrome

Singer Greg Page of the famous Australian singing group called the Wiggles developed the chronic fatigue syndrome but it has been reported as “Orthostatic Intolerance“. See my report here.

Similarly, one of Australia’s best known television journalists, Leigh Hatcher, has written a book about his own experience with the chronic fatigue syndrome called “I’m Not Crazy, I’m just a little unwell“. This is a quote from his website . . .

“in January 1998, Leigh Hatcher lay down for a ten-minute afternoon nap—and woke two hours later feeling as if he’d been run over by a truck. Without warning, he’d plunged into a health crisis that was as devastating as it was mysterious . . . and . . . He speaks frankly about the hurt and betrayal he felt when people questioned whether the illness was ‘all in his mind’. See here.

Other famous people from history to have CFS e.g. Charles Darwin

Charles Darwin, Florence Nightingale, and Paul Robeson. had the same symptoms before the label of chronic fatigue syndrome was introduced.

Some interesting facts:

Charles Darwin was extremely seasick when he sailed on a ship called the Beagle for the first time, as it rocked about in heavy seas during a gale. After returning to port he had chest pain and palpitations which were relieved when the storms subsided. When he set sail again he would often become exhausted by seasickness during storms, and would gain relief by laying in a hammock.

He also may have become ill after being bitten by the reduvid bug that causes Chagas disease, which is a common cause of illness in South America which he visited. That disease has an acute phase, and then goes into remission for many years before the chronic phase occurs. However, it may have been due to being poisoned by tribal chiefs who didn’t like his attitude towards religion.

When he returned to England he continued to suffer from fatigue for the rest of his life. His father was a prominent London doctor who thought that his sons chronic illness was due to the long periods of exhaustion during his ship voyages, and his wife thought that his problems may have been due to anxiety, but Charles said that he was not anxious, and that his problems were not due to the exhaustion from seasickness on his voyages.

I have written the Posture theory to explain the cause of such symptoms, and I noticed that the photos of him depict his very stooped shoulders, and he is often ridiculed by his critics with drawings depicting him as drawings depicting him as a stooped ape. I also noticed that he had a carpenter build a writing platform across the arms of his chair, and a photo of one of his rooms shows a tall music stand, with the platform for the music sheets at a height which would be used for standing up to read, rather than sitting. (I noticed such things after developing the method of standing to read and type to relieve some of my own symptoms. See here. Note also that despite his father being a top London doctor he was unable to prevent, treat, or cure the ailment).

Florence Nightingale is regarded as the founder of modern nursing. She became ill with “Crimean fever” (brucellosis) during the Crimean War. When she returned to England she kept working while exhausted, despite the fact that her doctors advised her to rest or risk chronic invalidity. For much of her life after that she was bedridden, and died at the age of 91. Despite being one of the most useful contributiors to society, the fact that she was bedridden had many people pejoratively calling her lazy and manipulative. Of course that is a ridiculous and offensive way of saying that she was continuing in a situation of adversity.

Paul Robeson was a famous American negro singer who developed the chronic fatigue syndrome

Sportsmen

Alastaire Lynch was a prominent Australian League Footballer and captain of the Brisbane Lions. He had many years of problems with chronic fatigue syndrome but was later able to return and complete his football career,

Raelene Boyle

Former Austalian Olympic athlete Raelene Boyle suffered faintness and fatigue and would sometimes sleep for up to 20 hours per day. For 12 years her symptoms were misdiagnosed as stress induced panic attacks but eventually she was found to have atrial fibrillation and she was given surgery to implant a pacemaker. Since then she hasn’t had any symptoms and has been able to return to the normal activities of a 61 year old woman. See here and here.

Three different approaches to discussing the chronic fatigue syndrome and the “all in the mind” arguments

Most people accept the “all in the mind” arguments for diseases until such times as one of those ailments affects themselves, in which case there are, in general terms, three “normal” and “common” and different types of response.

The first is the tendency to be defensive and argue that they are not mentally ill but have an undetectable physical problem.

The second is the consideration of doctors being respectable people who have completed at least six years of training at university, and have an occupation where they try to relieve the pain and suffering of anyone who has the misfortune of becoming ill. Therefore, the response of intelligent people is to study the ailment objectively and present scientific evidence of a real physical basis for their problems in a manner that is diplomatic and respectful.

The third response is usually not evident until all objective and diplomatic approaches have failed, in which case the person may become critical, angry, or even hostile toward the victim blaming arguments.

There are also other common responses where patients become anxious or worry about their situation, or where they lose all hope of anyone ever understanding or accepting their illness and become depressed.

There are also a number of widely known cliches or stereotypes which are a consequence, and which all such patients will have to deal with sooner or later, and the first is where the doctor says “Are you questioning my authority“, and the second is “So, in your opinion, it is not you that is mad, it is the rest of the world“.

Two types of Chronic fatigue

detectable and undetectable

There are two types of chronic fatigue. Firstly the type where the cause has been found, and the second where it hasn’t.

It is most likely that the majority have a physical or biological explanation, but it is generally argued that those which are detectable are therefore physical, and those which are not ‘yet’ detectable are mental.

The idea that undetectable causes must be mental is ridiculous.

Of course it is possible, but in many cases, just plain wrong, and it is just a matter of time before the real cause is found.

One of the typical arguments I have noticed is very devious and goes like this . . .

“Oh your type has no detectable basis therefore it is a mental disorder.” . . . and . . .

“Oh the other persons chronic fatigue is caused by brucellosis therefore it is not the ‘chronic fatigue syndrome’ which is a ‘diagnosis of exclusion'” (which is only diagnosed after everything else has been excluded). and . . .

“Oh the other persons chronic fatigue is caused by ‘orthostatic intolerance’ therefore it is not the ‘chronic fatigue syndrome'”. . . and . . .

“Oh the other persons chronic fatigue is caused by ‘postural orthostatic tachycardia syndrome’ therefore it is not the ‘chronic fatigue syndrome'” . . . and . . .

“Oh the other persons chronic fatigue is caused by ‘neurally mediated hypotension’ therefore it is not the ‘chronic fatigue syndrome'” . . . and

“Oh the other persons chronic fatigue is caused by a newly discovered real cause, therefore it is not the ‘chronic fatigue syndrome’.

In other words millions of people suffer from chronic fatigue, but the only ones who are given the diagnosis of “chronic fatigue syndrome” have been, and are now, and always be in the future, the ones who have a type of chronic fatigue which isn’t yet proven to be real, so they will continue to be ‘wrongly’ diagnosed as having a psychological, rather than a physical cause.

The problem of misdiagnosis or ‘maldiagnosis’

The problem is that as long as the real physical basis remains undetectable the patients will continue to be treated as if they are just ‘lazy’, or ‘unfit due to a lack of exercise’, or just haven’t had enough sleep, or are just whingers who complain about normal tiredness, or are just fatigued because of constant worry etc. In that regard the diagnosis of non-physical cause actually creates prejudice, and therefore adds an unnecessary problem to the patient with fatigue. Attributing the problem to non-physical factors is therefore a ‘maldiagnosis’ (a harmful diagnosis – one that does more harm than good).

Chronic fatigue – a common condition

Another observation is that 2-4% of the population, or 200 million people have the chronic fatigue syndrome, but there are more than 100 different labels for it, so if 100 different people met, they would each think that they had a different ‘rare’ problem, and never know that it was one of the most common problems affecting humans.

Patients with ‘chronic fatigue’ of any type would have more influence if they were united, rather than split into 100 different groups.

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The history of chronic fatigue syndrome

In the 1980’s I heard news reports of a supposedly brand new disease of modern civilisation called the Chronic fatigue syndrome, but it was only a few years after 1982-3 when I had scientifically proven in Adelaide that chronic fatigue was a physical and not a mental illness . The only thing that changed was the label from neurocirculatory asthenia to CFS. Furthermore, new diseases generally don’t just materialise from nowhere, and in fact the history of CFS can be traced back throughout history at least as far as 1750 when there was a book about it called “Febricula” which means “little fevers“. Similar outbreaks have occurred in more recent times. One example occurred in the nurses and staff of the Royal Free Hospital in London where it became known as the Royal Free Disease. Some people argued that it was due to a virus, but the most widely accepted opinion was that it was an example of mass hysteria. However, other outbreaks have been reported in many other places such as New Zealand where it was called Tapanui flu, and in Iceland where it was called Icelandic disease.

The problem has also been associated by Da Costa to infectious illnesses during the American Civil War, and by many others in World War 1, but other factors and many other theories relate the ailment to excessive exertion, poor food and water supply during long marches, injury and shockwaves etc, but the dominant view was that it was due to psychological factors related to anxieties and fears such as the fear of battle or exercise etc. Nevertheless I scientifically proved that it was a physical illness in 1982-3. See here, and one of my reports here. You can also read about the ailment and it’s history in at least 2 sections of my book here.

See also the Disease of 1000 names website which now lists more than 100 different CFS labels from history here.

Some quotes from history can be seen below . . .

References relating to the Chronic Fatigue Syndrome
A very common illness which has been well known for two centuries

The modern jargon for hypochondria is “Somatoform disorder” which is used to describe ailments which are “supposedly” imaginary or “all in the mind” and there have been many inappropriate and erroneous attempts to apply it to the chronic fatigue syndrome. Those attempts often succeed because most patients don’t understand the jargon, and can’t defend themselves from such entirely fallacious arguments

Many doctors and medical experts continue their attempt to create the public impression in their journals, and in newspapers, and on their websites that CHRONIC FATIGUE is a very new and quite rare condition. They imply that there has never been any scientific evidence of it having a real or measurable physical basis, and that therefore there is a great deal of doubt about whether it actually exists or not. It is still widely reported that the condition is just normal tiredness which some patients complain excessively about, or that it is “all in their mind“. Many doctors also persist with their disproven suggestions that the condition can be cured simply by thinking positively and doing some sort of exercise or another. I do not wish to comment on why they try to create this false, and insidious, and pernicious impression but I will present some quotes from medical publications of the past to discredit that deceit.
The chronic fatigue syndrome is one of the most common diseases of modern life but it is not a new condition. In the past it has been given many different names which include DaCosta’s syndrome, neurasthenia, neurocirculatory asthenia, vasoregulatory asthenia, and the effort syndrome etc. Here is some information from the past which has been extracted from the 11th edition of The Posture Theory.

“The patient’s voice falters. ‘Doctor, I’m so tired. What’s wrong, what shall I do’.
Every hour, every day, in almost every doctor’s consulting room, at least half the visitors voice this complaint.
Of all ages, of either sex, rich or poor, they make up the vast throng of fatigued human beings who get little comfort from the pills, shots and examinations they solicit from baffled physicians”
From: Our Human Body, It’s Wonder and It’s Care (1962) p. 410

“Neurasthenia”: This diagnosis “had wide popularity in the nineteenth century and is now obsolete. It referred to a state in which the major symptoms were chronic fatiguability, lack of endurance, backache, and headache”.
From: Harrison’s Principles of Internal Medicine 6th Edition (1970) p.1863

“Neurasthenia is a term which, in the past, was used more commonly as a diagnosis than almost any other”. Now it is used only for cases of “execessive persistent fatigue” where there is no evidence of pathological cause.
Reference: The British Encyclopaedia of Medical Practice (1950) Vol.10, p.32.

Neurasthenia . . . The classic neurasthenia patient is thin and underweight and “wanders from one physician to another seeking relief from various complaints and may undergo unnecessary surgery or extensive medical treatment on insufficient or vague indications …. Changes in lifestyle … and ‘rest cures’ along the lines of old-time spa therapy are of value in some cases.”
Reference: Current Diagnosis And Treatment (1973) p.574.

“Neurasthenia is a state of chronic mental and physical weariness for which there is no obvious cause.” They feel tired “as soon as they attempt to undertake the ordinary tasks of life” and when they do manage to work it is below their previous standards.
They awake “tired and unrefreshed” and are at their worst in the morning except when “they have to work hard, in which case the amount of tiredness is out of proportion to the amount of work performed.”
There are many accompanying symptoms including headaches, palpitations, and indigestion, and . . . “Reading makes their eyes ache or produces the sensation of spots in front of their eyes.”
Reference: The Universal Home Doctor (no date) p.531.

In the 19th and early 20th centuries people who suffered from pain and fatigue or paralysis were diagnosed as having ‘nervous spine’, ‘neurasthenia’ or ‘fits’.
Edward Shorter called such people “somatizers” and described them as suffering from “pain and fatigue that have no physical cause”, and suggested that they were playing sick as a means of consciously or sub-consciously seeking solace, attention, or social excuses.
“Such somatizers have produced a fascinating succession of phantom diseases” and the “Archetypal Victorian ladies” collapsed on their beds, or had fits, convulsions, or paralysis, but, “By 1900 such operatic displays softened into a symptomatological chamber music”, of less dramatic symptoms of neuralgia, headache, and fatigue.
Such patients were “frustrating to no-nonsense physicians such as the early twentieth century Kentucky doctor” who believed that “a good spanking”, or sometimes even a “good cussing” was the best treatment for such “evident hypochondriacs”.
Nowadays the condition is called “myalgic encephalomyelitis or ME (also called ‘yuppie flu’ or chronic fatigue syndrome)”.
Reference: The Cambridge Illustrated History of Medicine (1996) p.111-112.

“The neurologist calls the disease, in technical phrase, neurasthenia; the gynaecologist is too likely to look no farther than the womb and ovaries; and the general practitioner is apt to imagine spinal disease, dyspepsia, “liver complaint” or “malaria” to be at the bottom of all the trouble. Each treats the patient from his partial stand-point, and is disappointed that recovery does not result.”
From: The Ladies Guide (1904) p.588-589

The psychiatrist divides these individuals into groups of “anxiety states, obsessional neuroses and conversion hysterias.”
These conditions include the effort syndrome (chronic fatigue) and may occur “in the convalescent period after such acute illnesses as influenza, pneumonia or even tonsillitis, particularly in young adults.”
A hasty convalescence predisposes to this condition so “special care” should be taken in determining the appropriate time for returning to work.
The condition causes “distress, disability and economic incapacity” and has an intractable nature.
“Drugs are of little or no value.”
Reference: Textbook Of Medical Treatment, 4th edition, (1946) p.604-606.

The most common symptom in neurasthenia is ready fatigueability, but there can also be headaches, dizziness, ringing in the ears, palpitations, chest discomfort, cold feet and hands, digestive disturbances, constipation, sleeplessness, and “pains in the neck, between the shoulders, or in the back and the limbs, with tender spots along the spine”. “In fact the symptoms are so many and so varied that it is common for a neurasthenic to imagine that he has any or every disease that he happens to read about.”
Reference: Modern Medical Counsellor Revised Edition (1957) p. 554

The Chronic Fatigue Syndrome has previously been called many things, including the Effort Syndrome because it often involves “effort intolerance” and “is characterised by a group of symptoms which unduly limit the subject’s capacity for effort”. Breathlessness 93%, palpitations 89%, fatigue 88%, left inframammary pain 78%, dizziness 78% and or faintness 35%.
Reference: Diseases of the Heart & Circulation 2nd Edition (1956) p.937-944

“The pulse is always greatly and rapidly influenced by position . . . Dizziness was often complained of”. It was increased by stooping (case 44); by exercise (case 57) or by laying on the left side in some cases or on the right side or the back in others. For treatment . . . “Their equipments be such as will not unnecessarily constrict and thus retard or prevent recovery”.
Reference: Da Costa J.M. (January 1871), On Irritable Heart, The American Journal of the Medical Sciences p.18-52

Erben’s phenomenon . . . temporary slowness of the pulse on stooping or sitting down; said to characterize certain cases of neurasthenia.”
Reference: Dorland’s Illustrated Medical Dictionary 25th edition (1974) p.1179.

Neurocirculatory asthenia, Da Costa’s Syndrome is less adequately called “the soldiers heart”, the “effort syndrome” and “anxiety neurosis”, and involves instability and abnormal irritability of the nervous and circulatory system of unknown cause. It tends to be precipitated by physical exhaustion, nervous strains and infections.
Symptoms occur as a syndrome of breathlessness with sighing respiration, palpitation, exhaustion, precordial pain, (or ache), dizziness, nervousness, tremor, sweating, headache and faintness aggravated by effort or excitement. In some cases the condition is more or less constant with little or no provocation. “That such a state of ill-health exists there can be no doubt”. It is not just fatigue, or infection or nervous strain or psychoneurosis, but may attend or follow such conditions “or even frequently stand alone”.
The effort syndrome is sometimes considered unworthy of discussion because “so far as we know, it is not an organic disease, and since it may occur in perfectly normal persons,” but it is important because “it is often a partially or completely incapacitating condition”, and treatment is important but often neglected, and it is essential to distinguish it from organic heart disease. . .
It is a real and not an imaginary incapacity, even though at first glance it may have appeared imaginary during World War I (1914-1918) when it was sometimes labeled “malingering”, and even though in civilian practice it has frequently been diagnosed as “mere nervousness”.
The cause remains obscure, where there are no pathologic changes and the heart is usually structurally normal, and there are no lesions of the nerves or glands, although “Abnormalities of central nerve cells induced by fatigue in experimental animals have been noted and may be possible factors”. . .
Blood pressure may be a little elevated and variable, strength and endurance tests and vital capacity are low, in some cases extremely low. There is an easily induced oxygen debt on exercise with an excess accumulation of lactic acid.
Reference: Paul Wood, Heart Disease 4th edition (1951) p. 579-585

DaCosta’s syndrome . . . “Lewis commented ‘it is because these symptoms and signs are largely, in some cases wholly, the exaggerated physiological responses to exercise . . . that I term the whole the ‘effort syndrome’ . . . ‘a proportion of the patients whom I include in the group effort syndrome sooner or later acquires the diagnosis of neurasthenia.'”
In some cases “the chest is long and narrow or flattened and associated with a kyphotic curve” or the person is slight in build or has chest wall deformities. The pulse shows an exaggerated reaction to posture. The condition can effect soldiers particularly those who came from sedentary occupations and who had signs of the condition in civil life many years before joining the army. It affects sedentary town dwellers and is commoner in women”.
From: Wooley C.F. (May 1976) Where are the Diseases of Yesteryear, Circulation p. 749-751

DaCosta’s syndrome . . . After exercise the pulse rate deceleration time is abnormal.
Reference: Paul Wood, Diseases of the Heart & Circulation, 2nd edition, Eyre and Spottiswoode (1956) p. 940-942

During exercise the breathing rate increases for all people including those with neurocirculatory asthenia, but in those with neurocirculatory asthenia the “breathing becomes disproportionately shallow.” “During exhausting work, such as running, patients developed significantly high blood lactate concentration” indicating “that aerobic metabolism was defective in these patients.”

Since World War I it has been known that high concentrations of C02 can trigger a so-called ‘anxiety attack’ in patients with neurasthenia.
These patients were generally thin and “were poor athletes” and were especially poor swimmers”. . . and their symptoms “are not mentally determined or removable by analysis.”
Reference: Neurocirculatory Asthenia: 1972 Concept, Journal of Military Medicine (April 1972) p. 142-144

The concept of ME (the Chronic Fatigue Syndrome) has deeply divided the medical profession and provoked bitter arguments between those who believe it is “entirely imaginary” and those who think “it has an organic basis”.
Some doctors belittle the condition and regard the patients as malingerers and manipulators.
The condition mainly affects women, but some men also suffer from it, including “both male and female members of the medical profession”, and it features severe fatigue which can “be made worse by exercise, a single act of which may cause fatigue for weeks.”
Reference: Symptoms (1996) p. 300-304

It may be useful to inject the blood of people with chronic fatigue into healthy experimental subjects to determine if they too become fatigued. M.B.

Reference: White P.D. (1951) Heart Disease 4th edition, Mcmillan & Co., New York, Ch. 22 (neurocirculatory asthenia) p.587.

The origin of ideas about posture and fatigue
When I first became interested in the study of medicine one of the primary symptoms that I was considering was a form of fatigue. Four years later I was able to recognise that it came on more readily and persisted longer than ordinary fatigue. I likened this to the way one end of a seesaw rose too fast and fell too slowly if the people on each end were of unequal weight. I therefore referred to the fatigue as a disorder of equilibrium, and began writing an essay to summarise that conclusion.
At that time I was also writing an essay on a postural cause of backache, chest pains, breathlessness, stomach pain, and kidney pain. As the fatigue occurred together with this set of symptoms I suspected that there may have been a postural cause for the fatigue as well, but did not have the evidence to establish that fact. I therefore started a third essay in which I brought all of this information together in an attempt to integrate it.
While looking for clues I came upon a word in a Medical Dictionary called Valsalva’s maneuver which referred to an experimental method for stimulating the nervous system. It then occurred to me that overstimulating the nervous system might damage it and cause it to malfunction, resulting in chronic fatigue, so I sought a more detailed explanation of the maneuver at the Barr Smith medical library. I then determined that Valsalva’s maneuver involves holding the mouth and nose shut and breathing out forcefully to increase the pressure in the lungs. This impairs blood flow through the chest and stimulates the nervous system to increase the blood pressure in the arms and legs, which in turn forces the blood through the pressurised chest.
I was aware that the fatigue symptom was common in sedentary workers and rare in manual labourers so I assumed that repeatedly leaning toward a desk hundreds of times a day for many years might be repeatedly pressurising the chest and eventually causing the nervous system to malfunction.
I then discarded the three other essays and started writing one new essay describing how all of the symptoms had a common postural cause. When I was considering several titles I realised that I was writing a framework of ideas to link a framework of symptoms, and I noted that these were related to the framework of the human body, so I eventually decided that one of the best of the title options was The Matter Of Framework, so that is what it was called, and that essay was the original Posture Theory.
I later attended a meeting of a group of people who suffered from chronic fatigue, and they were basing their discussion on the possibility that the condition was caused by a virus.
Since then I have concluded that there are different causes, types, and degrees of severity of the condition. Most, if not all of these conditions involve excessive tiredness, which is a disorder of sleep metabolism, and one type involves abnormal responses to physical exertion, which is a disorder of exercise or energy metabolism. M.B.

Any written permission which has been granted to publish information from this webpage relates to the information above this line. The information below this line is new to this page and may be referred to or linked to, but not published. Acknowledgement of the source is required. M.B.

The Posture Theory:

in progress from 8-3-02

The nature, measurement, and management of The Effort Syndrome

The measurement of chest width, depth, and sternum angles

There have been numerous observations that people with CFS often have thin and narrow chests, but other patients have normal or obese builds therefore it is possible that the thin chested physique may be more specific to The Effort Syndrome. This is because such a physique crowds the heart and lungs and alters their shape and the sharpness of the curves of the main arteries, and would probably influence cardiovascular function, as well as disposing to visceroptosis. Therefore the following measurements would probably be relevant.

1. Chest shape measurements

The severity of the spinal stoop, the narrowness of the chest, and the flatness of the chest could be measured directly by measuring the curve of the spine, the width of the chest, and the angle of the breastbone, but perhaps a better guide would be the measurement of the distance between the lower tip of the breastbone and the spine. These measurements may show that the smaller this distance, the more likely the incidence of The Effort Syndrome

2. Heart shape measurements

The shape of the heart may influence heart function, and in this respect the measurement of the length of the heart in relation to body height, and the width of the base of the heart may be relevant. A pyramid shaped heart of average height with a broad base may tend to be more stable in its function, whereas a bowling pin shaped heart which is tall and thin with a narrow base might have a greater tendency to unstable wobbling palpitations, and a more common association with The Effort Syndrome.

The measurement of the extent of visceroptosis

There have been numerous observations of a link between visceroptosis (the displacement of abdominal organs) and CFS but these associations have been dismissed because of some inconsistencies. However further studies may produce a more reliable link between visceroptosis and The Effort Syndrome, and the more significant the visceroptosis the more likely the association. The following suggested measurements could be made.

1. Minor visceroptosis with significant displacement of one abdominal organ.

2. Moderate visceroptosis with significant displacement of up to three abdominal organs,

3. Severe visceroptosis with obvious displacement of five or more abdominal organs, and with the base of the stomach extending below the navel.

For more information about visceroptosis see The Visceroptosis Webpage

The Chronic Accrual and Recurring Fatigue Syndrome
CARFS Webpage ©

The Runaway Freight Train Syndrome 11-7-06

The problem of chronic fatigue syndrome is difficult for the general population to understand because it is not seen as being much more than the problem of normal fatigue. Therefore I will try to explain it by making a comparison with a runaway train.

While the train is traveling along a flat plain, it can slowed down by applying the brakes, and then when it comes to a small downhill section it will speed up again under the influence of gravity, but it can be slowed by applying the brakes again, and that process of speeding up and slowing down can be sustained for 100 miles, and is equivalent to the way people go about their lives, and rest or sleep when necessary to maintain a healthy sense of well being throughout 100 years of life.

However, when a train begins to descend a steep mountain track it may initially speed up and then be slowed by applying the brakes, time and time again, until the brakes begin to weaken, or the steepness of the mountain increases, or the slipperiness of the track worsens, in which case the brakes won’t work effectively so that the train never actually quite returns to its standard speed. As the steepness increases and the brakes become less effective, the train continues to accelerate even if the brakes are constantly and fully applied. The train won’t be able to stop until it reaches the bottom of the mountain and then travels a very long distance across the flat plain below.

That is what the chronic fatigue syndrome is like. As long as a moderate lifestyle is maintained there does not seem to be a problem, but if fatigue occurs, and if nothing is done about it in the early stages, it will reach a degree of severity where normal amounts of rest or sleep will not quite restore normal energy levels. In such cases the fatigue will subtly, and almost unnoticeably get worse until it is uncontrollable, and then months or years of rest may be required. Furthermore, it may not be possible to achieve full recovery, and with the basic problem remaining, the fatigue is likely to recur for various reasons at various intervals of time and require long term rest to recover from.

Telling a person that “we all get fatigued” and “all you need is rest” is not going to be effective, any more than a manager from the station emergency department is going to help the driver of a runaway train which is cascading uncontrollably down a mountain by saying to the driver “have you thought of using the brakes”. M.B.

The Chronic Fatigue Syndrome: New definition 19-11-04

“Effort Intolerance” is so commonly encountered in cases of the Chronic Fatigue Syndrome that it should be classified as the hallmark symptom of a specific condition which has formerly called The Effort Syndrome, and any condition which does not include that feature should be recognised as being different. Such other forms of chronic fatigue may involve only tiredness and should be referred to as sleep disorders, or where the tiredness is due to a sense of sadness then the problem would be referred to as depression.

There are many people with “Effort Intolerance” who are not always tired, and are rarely or never depressed, so unless the condition is defined separately there will always be confusion in understanding or defining the problem.

Within the category of “Effort Intolerance” there are nevertheless other fatigue related symptoms which may overlap the symptoms of sleep disorders and depression, and there are a collection of other symptoms which accompany the condition which is why it produces confusion in diagnosis and why it is called a “Syndrome” (the word syndrome is derived from the Greek origins “syn” which means “with” and “dramein” which means “to run”, where symptoms often run together or characteristically occur as a collection in the one ailment).

Symptoms related to fatigue include “Effort Intolerance” where mild levels of exertion are possible but high levels are not, i.e. the ability to walk at a casual pace for many miles, and to do mild exercise regularly and often where only moderate improvements in fitness are possible, and the capacity for normal levels of fitness or to engage in strenuous exertion is never achieved (also breathing symptoms, faintness, and dizziness occur, but are more likely to be associated with exertion). Other fatigue related symptoms include the tendency for tiredness during the day, the tendency for fatigue to accrue over a period of weeks or months of sustained normal activity, and the tendency to develop over fatigue or exhaustion which is not relieved in the normal way by short periods or rest, such as hours, weeks, or months. This could be referred to as the Chronic Accruing and Recurring Fatigue Syndrome or CARFS, and it is most likely that CARFS and Effort Intolerance are seperate features of the same problem with the same cause.

Other symptoms in the syndrome include lower left and right sided chest pains, sometimes stabbing or lancing in nature, cramping chest pains occurring on the extreme left and right side of the chest, a form of breathlessness which occurs periodically as a brief difficulty breathing in, as if breathing inwards until a limit is reached so that a full breath cannot be achieved, faintness (with or whithout actual fainting), dizziness, upper-abdominal pain, aches in the back in the region of the kidneys, neck ache and shoulder pain usually occurring on one side, and lower back ache or pain. Many of those symptoms are related to postural changes, such as postural hypotension (orthostatic hypotension – postural low blood pressure) which causes a sense of faintness and dizziness when moving from the laying to the standing position. That type of faintness is often associated with unstable blood pressure (called labile blood pressure) where there are fluctuations between low and high blood pressure, and these can be evident as a persons body is moved up down or sideways on a tilt table where they sometimes report experiencing very distressing symptoms of faintness or impending collapse. .

People with the chronic fatigue syndrome are often but not always characterised by a particular physique which includes a thin build, a stooped upper spine, forward arching of the lower spine, sideways curvature of the spine, and, a long, narrow, or flat chest. M.B.

Effort Intolerance in The Effort Syndrome; A real physical abnormality which has absolutely nothing to do with a fear of exercise (posted 16-11-05) Introduction

There has been much presumed and said about effort intolerance in The Chronic Fatigue Syndrome being a consequence of a fear of exercise, but this is because doctors have been writing such stuff based on the absence of laboratory evidence, and their reluctance to believe what they have been told by patients. To really understand this problem, in the absence of scientific proof, would involve doctors actually experiencing this problem themselves, but when that happens their own colleagues have been sceptical. In an attempt to redress this misunderstanding I will give a contrasting account of symptoms related to extreme sport in healthy people, and the symptoms occurring in CFS exertion crises.

Introduction: An example of my experience with sport before I developed CFS

See also here

My father playedsport everyday of the week, including night cricket, snooker, darts, and lawn bowls, and he ultimately died of a heart attack at age 61 while playing table tennis. I had a similar enthusiasm for physical activities, and practiced such sports with my father in the evenings. I was also involved in school sports and athletics, before school, during recess, and at lunchtimes, and immediately after school before going home for tea. I also played a lot of sports outside of school, on the weekends, and at boy scout meetings, and at a private gymnastics club, and I attended swimming classes at the beach during school holidays. I was a patrol leader in the scouts, captain of a lacrosse team, and an instructor in the gymnastics club.When I was about 19 years old The National Fitness Council of Australia offered me a scholarship to study Group Work at The S.A. Institute of Technology. I turned it down in favour of another scholarship offered by the state government Department of Community Welfare, and then turned that down in favour of a third offer from the Commonwealth Government. (The sport described below was called lacrosse, and from memory was played with 10 players per side. It is a bit like the game of hockey except that it is played primarily by throwing the ball through the air with a lacrosse stick which was about 4 foot long, with the first 3 feet being the handle, and the upper section being a net with a triangular frame about 10 inches across at the top. The objective was to scoop up the ball from the ground, or catch it in the air, and pass it from player to player until eventually throwing it past a goaly into a large framed netted goal enclosure about 8 feet high, 8 feet wide, and six feet deep. I often played lacrosse on cold and rainy mornings in several inches of water and mud, without wearing my spectacles, and without a helmet. The following account provides a description of one incident in one game.)

When I was 15 years old I was a member of a lacrosse team. When the original coach left, another coach took his place, but was often too busy with other duties to attend training sessions or matches, and after losing more than a dozen games in a row one captain after another stopped attending. Ultimately, the remaining members of the team held a meeting to select an on field captain. I was late for the meeting and when I walked through the door I was told that I had been elected unanimously because I reliably attended games and was the oldest. Despite my protests at not wanting the job, I was made captain anyway. We lost more than another 10 games when we came to play the top team in the high school league.

We rolled up with 6 players (mostly small) against the opposition of 10 (mostly taller) which had several spare players accompanying them, and, rather than abandoning the game, they gave us some of their spare players as substitutes. I won most of the opening plays against the state centreman by using a trick or two. Nevertheless, it wasn’t long before we were losing by about 20 goals to 1, so I had a backman take my place in the centre with instructions to swing the ball in my direction in the outfield. The other members of the team were instructed to distract the opposition when I got the ball because I was going to hog it in an attempt to get a goal on my own, for the hell of it. The ball came in my direction as planned, and after scraping it from the ground I was being attacked by 2 opponents so I ran back toward their goal, and as they were still following me, I ran behind the goal, and then across the back of the field. I then ran forward and made a full on charge at the captain, who was much larger than I was, and although I was not going to ram him I did have him bluffed. At the last moment, I dug my sprigs into the ground and angled left, leaving the captain behind. I was then being attacked from the front by two taller backmen, so I ran to the outfield and along the boundary, with about 4 players positioning themselves to stop me getting through to the goals. I then raised my net and ran directly for the goals. When one of their backmen came charging toward me I feigned a throw, and turned my back, and swiveled my head and gave a facial expression as if I was mystified about where the ball went. This temporarily had all of the opposition looking in the direction of my throw, and at that moment I ran straight for the goal again. It was then obvious to those players that I still had the ball, so one of the backman brought his heavy stick up and over my head and belted it down. It bounced off the side of my head and grazed my ear, and rammed into my shoulder. I then turned my back, and then angled my way straight toward the goal, with only two backmen pursuing me. I increased my pace, and left them just far enough behind to be ineffective at stopping me, I then had only the goaly to deal with. He was the biggest goaly in the league, and seemed to occupy the entire frontage of the goal, so I raised my net to aim the ball straight between his eyes, in a bluff aimed at getting him out of my way. Of course I didn’t want to put him in hospital, so my next move was to pirouette and swing the ball backwards with a scooping action under his feet. By that time the goaly had thrown his stick into the air and had run away laughing. I assumed that he thought that anyone who had ran through every member of the best team in the league deserved a goal just for the joke of it. In any event, the ball rolled slowly across the unguarded line, making the score about 20 goals to 2. In the meantime, I was still rotating in the pirouette with a lot of momentum, and I stumbled forward for about 15 yards before losing balance and falling to the ground. In the process of evading all ten members of that team I probably ran, mostly flat out, a distance of more than 200 yards. My heart was pounding, I was gasping for breath, and I felt the taste of blood welling up in my throat, but that wasn’t an entirely unusual thing for me to experience in sport. After about a minute I staggered to my feet, and could hear a lot of raucous cheering and laughing, and while still struggling to get enough energy to speak I yelled out to my other team members, “OK fellas, we’ve got them worried, now let’s finish them off”.It was probably only two or three minutes before I had made my way back to the centre to continue play. When the game ended about 20 minutes later we had been massacred 49 goals to 3.

The point of this description is to give some insight into the fact that I played a lot of sport, mostly for the fun of it, and anyone who thinks or says that I am, or was afraid of exercise, has lost the plot.

Some more examples of sport before I had chronic fatigue syndrome.

Exercise Training in The Chronic Fatigue Syndrome – A Biography I played a lot of sport as a teenager, sometimes on cold and rainy mornings on ovals that were 3 inches deep in mud and water, and I ran in hurdle events and the mile, and up and down hills and valleys in cross country races. I was also involved in a private gymnastics club where, on a typical night I would arrive at 7 p.m. and assist with moving heavy wooden springboards and vaulting horses from their storage shed into the hall. The next 4 hours would involve warm up sessions, which sometimes included tossing a 5 kg medicine ball back and forth 50 times, followed by training sessions which included 50 or more somersaults off the floor, or off springboards, or teeterboards, or over the 4 and 5 foot vaulting horses, and the evening would end with team relays, or a game of indoor soccer or volley ball, after which the equipment would be carried back to the shed, finishing at 11 p.m. On summer weekends we would often go down to the beach and somersault down sand hills and go swimming, and diving or somersaulting off jetties.
In my late teens I obtained 3 scholarships to study Group Work at The Institute of Technology. The first was from The National Fitness Council of Australia, the second was from the State Government Department of Community Welfare, and the third, which I accepted, was from the Commonwealth Government. I completed the course of subjects which included individual, group, and social psychology, and politics, and I had interests in leadership methods, creativity, and conformity.

Later, in my role as leader of the gymnastics club, I would typically stand in front and demonstrate 20 push ups, 30 toe touches, and 40 side stretches etc, for the class to follow. However, there were occasions when parents would advise me that their child had a health problem such as asthma, which could benefit from exercise, but they would show concern that too much strain could be a problem for them. I dealt with this by advising the child to do the same exercises, but not to worry about trying to keep up the same pace. I also instructed the group not to criticise him, as that would prompt him to try too hard for his own good and would discourage him from continuing.

When I was about 22 I had a very large steak and vegetable meal for tea, and 10 minutes later walked into the gym and flipped into a hand spring, and felt something rip inside my belly. The incident seemed uneventful but about 2 months later I started getting an ache in my belly whenever I leaned toward my desk in my job as a clerk. This ache gradually became worse and was eventually accompanied by various other problems such a faintness, breathlessness, or dizziness whenever I leaned toward the desk.

Eventually some of those problems also affected me in the gym when for the first time in my life, exertion was giving me problems.

Examples after I developed the chronic fatigue syndrome

I first noticed it when, on one occasion, I demonstrated a round off back somersault, and when my feet thudded to a stab landing, a thousand stars splayed across my eyes, and I felt dizzy, and faint, as if I might collapse.

A few months later I was getting a pounding heart each time I lifted my left foot, and then my right foot off the ground, and I was confined to laying down a lot because of the effort of walking.

My doctor was unable to explain these symptoms and they were getting progressively worse so I resigned from the gymnastics club, and soon after that I resigned from work and began reading a medical dictionary at the rate of one or two words a day until I found that my symptoms were consistent with an ailment called Da Costa’s syndrome. (It would now be called the chronic fatigue syndrome).

In order to prevent being crippled by abdominal pain which occurred soon after I started leaning toward a desk to read or write I would read for five to ten minutes and then lay on my back on the lounge room carpet and think while staring at the ceiling for most of the day. (Thinking never caused me any pain at all).

As my health had previously deteriorated gradually over a period of about 3 years, I also decided to participate in a fitness programme with the view to gradually improving my fitness and recovering full health in a year or two. I therefore enrolled in a course at The South Australian Institute For Fitness Research and Training.

My initial fitness was measured and found to be zero, as compared to a friend of mine who had an average fitness of 900, and an athlete level of 1200. Part of the programme involved jogging, and typically I could only jog slowly for about 20 yards before struggling for breath and having to rest. For example in a group of 50 people I would be running last around an oval, and for a while I had a companion. He was 40 years old, overweight and asthmatic and I told him not to worry about leaving me at the back alone, and that he should run ahead and catch up with the group which he did. As the group out lapped me two 50 year old men ran together and one said, in a voice loud enough for me to hear, “we have an excuse for being unfit because we are 50 and have spent years smoking; we are not like the youth of today (meaning me) who are unfit because of laziness”.

After 3 months training my fitness level rose to 350 so I increased the number of days I trained to 4 per week. On one occasion the instructor ran some relay races and I ran as fast as I could, but was not much help to the team, and then we were required to squat down and place a 5 kg medicine ball between our knees and frog hop to the end of the hall and back. After 10 yards my heart began to beat violently and I fell to the floor and crawled around on all fours feeling faint and dizzy and on the verge of collapse for about 10 minutes. It took me a week to recover from that 10 yard run. On another occasion we left the hall and ran through the streets for a change. After about 300 yards all the other runners were so far ahead that they had gone around street corners and were out of sight so I ran alone for about 20 minutes until returning to the hall 10 minutes behind everyone else. After 6 months my fitness was measured again but it was still 350 despite improvements in my speed, strength, and endurance on the ergometric cycle. (fitness level was measured by graphing pulse rate over load). During the ninth month I was training 6 nights per week but I threw knee cartilage and had to stop.

A couple of years later I was invited to attend the gymnastics club annual camp and while there I was invited to participate in a game of soccer. When I tried to run and get the ball I would get the same problem with pulse rate and faintness and have to stop and simply get the ball only if it passed within a few feet of where I was standing.

I had been making detailed observations and studying each of the symptoms, including the fatigue, for about four years when I finally concluded that most of them could be attributed to leaning forward, and wrote the first account of The Posture Theory as an essay called The Matter of Framework. The fatigue was due to postural pressure on the air in the chest which blocked blood flow and stretched the veins below, similar to the way in which a garter blocks blood flow in the leg and causes varicose veins below the garter line. However unlike varicose veins which show up on the legs, the enlargement of the main veins in the abdomen, or the whole system may not be visibly evident, but something was impairing the normal blood flow through the body and that was my estimate of the causes of exercise problems and fatigue.

Shortly after that I discussed my ideas with the head of the Fitness Institute and he suggested that I run a research programme to study the problem in more detail. I was aware from the medical literature that the general view was that these patients could not or would no train and that their reluctance to participate in exercise programmes was generally attributed to a fear of exercise. Other researchers were treating the patients as if they were physically sound and expecting them to train in normal programmes with healthy people. However, I knew that the pressure to conform would make the fatigued patients run faster than their limits and cause problems, so it did not surprise me that all of them refused to run, or dropped out of the courses before results could be achieved.

Therefore in order for a programme to succeed and provide improvements in health and meaningful data it would need to be designed so that fatigued patients were in a group of their own under instructions to walk or run at their own pace within their own limits, and not to be concerned about how fast others were going.

The first 3 month course involved about 20 people with 6 remaining at the end. By the end of the third course about 80 people had been medically assessed and more than 12 were still training with some continuing for the entire 9 months, and one person participated in a 6 mile marathon. The fitness levels at the outset had examples at the level of 100 and 300, but there were also some at 700 or 1100 and that data confused me until some years later when I suddenly realised that there were different types of chronic fatigue syndrome (for example the low measurements would relate to exercise disorders, and the high measurements to sleep disorders)

Unfortunately the writing of the data involved desk work which was aggravating my abdominal pain so when I was asked to increase the programme to include 200 participants I stopped.

My health returned to tolerable levels after about 10 years but I never fully recovered.

For example, every summer I would go to the beach and run about 10 paces along the sand and then hop step into a hand spring, and when I landed abruptly with my back arched and my arms outstretched I felt a rip followed by a gnawing ache in my belly. I did that once every summer for at least 5 years, always with the same response and have never had a medical explanation for it. Similarly, one day I was digging in the garden and the spade struck a rock under the dirt. The sudden jolt caused a pain in my midriff which persisted for 3 months and was accompanied by severe constipation for that time. Also whenever doctors prodded my belly with their finger during medical investigations I have always felt pain when that same spot is struck, and on some occasions it has persisted for a week after.

In those early years I decided to build a carport and pergola around my house. I would start digging with a post hole digger at 9.a.m. After 10 minutes the hole would be 1 foot deep but I would be breathless and dizzy and have to stop and rest for half an hour. At 11 a.m. I would start again and 10 minutes later when the hole was 18 inches deep I would have to stop and rest again. By mid afternoon through several digging sessions I was able to complete 1 and a half holes 3 feet deep. At 4 p.m. my neighbour would return from his full days work and dig 3 or 4 holes in an hour without having to stop and rest.

Specific Examples of exercise limitations in the chronic fatigue syndrome

Also there were times when I would go to town by bus, and sometimes I would be late so I would have to walk fast or jog to get to the bus stop on time. On one occasion I had to walk briskly, and was at my limit when I saw the bus passing across the end of the street. I then walked faster until I got around the corner and could see the last passenger getting on, so I ran, and my heart began to pound violently so I had to stop. I watched the bus driver looking at me as if I was too lazy to run and then he drove off in disgust and I had to wait in the cold and rain for the next bus.

I kept feeling generally healthier as time passed so from time to time I would try to run and could go quite fast for short periods of time but there was always a problem with symptoms if I didn’t keep within reasonable limits. However sometimes I got caught in situations where I was motivated to ignore those limits. For example I often go walking, sometimes up and down hills, but on one occasion I was asked to join some bush walkers. It was difficult enough to keep up the pace in the early stages but then the leader turned left up a steep hill. I puffed and panted to get to the first tree about 10 yards up and after reaching the second tree little old ladies and old men with walking sticks started to stream past me. By the time I got to the top of the hill every one else was relaxing and chatting and eating their sandwiches or having a cup of tea, and I was trying to hide my breathlessness and look as if If had gone slow because of loose shoelaces. A few years later I was able to walk quite briskly up several flights of stairs so I would do so as a form of regular exercise, instead of getting the lift.

Some time after that I was walking up and down hills for exercise when I met a friend who asked me to follow him down a track to see some native flowers. When we got to the bottom there was only one way out – up – and it was steep. He kept his normal pace on the way up but after about 10 yards I was puffing and panting and my heart was pounding so I had to grab hold of a tree trunk for support. My friend looked at me from 50 yards ahead and his dog came bounding down and licked me in the face as if in a reassuring manner and then went bounding up again. The dog would disappear and come bounding back several times before I reached the top gasping for breath.

In summary, the condition that I have been discussing is nowadays called The Chronic Fatigue Syndrome. I believe that the term was first used overseas before 1975, but I cannot recall when it came into general use in Australia, or when I first became aware of it. However I have been able to establish that it is measurable, that its severity varies from person to person, that it involves an exercise disorder and, or a sleep disorder, and that the condition generally responds favorably to appropriately designed exercise programmes and may even, in some cases be cured. However in other cases, despite participating in exercise programmes which would make an average person extremely fit, and despite improvements in the general feeling of well being, there will remain a persistent limitation until the exact anatomical cause can be confirmed and cured. M.A.Banfield

See the Banfield Principles for Exercise Training, and symptom management in a type of Chronic Fatigue Syndrome called the Effort Syndrome here

Conclusion

As any one who reads these accounts can clearly see, there is a lot of difference between the physical response to exercise in healthy people, and the response in people with The Chronic fatigue syndrome. M.B.

Quotes from other authors

Caughey J.L. Jr. M.D.(April 1939) Cardiovascular Neuroses: A Review. Psychosomatic MedicineVol.1, No.2, p.311-324 . . . The typical patient with the ‘effort syndrome’ was “‘‘never allowed‘ to take part in competitive sports” and has felt inferior physically to others of his own age”. . . “They never learned to keep on when the going was hard” . . . during the exercise test . . . “the response is no more dependent on the amount of exertion as it is than on the emotional reaction he has, the fear that he has that the test will injure seriously his already weakened heart” (end of quote)

Paul Wood O.B.E. (1950) Diseases of the Heart and Circulation 2nd edition, Eyre & Spottiswood, London p.943 . . . From chapter XX111 about patients with the ‘effort syndrome’ . . . “They are timid children far too dependent on maternal protection. At school, kindly doctors and soft mothers protect them from the hazards of football, swimming, and the gymnasium. It is probable that predisposition to psychoneurosis is mainly hereditary, but early environmental factors, such as domestic strife, insecurity, suppression, and maternal coddling, play their part . . . Fear of football and fear of swimming are common in childhood, and may precipitate anxiety.” (end of quote)

The second reference was by Paul Wood, and it had a major influence on attitudes toward the condition, changing the general view that it was an ‘effort syndrome’ to an ‘anxiety disorder’ that has prevailed until today.

To give you some indication of how misleading it is, I can say that you have just read my description of how I participated in sport when I was a teenager. I would play in the cold and the wet, and the rain, on an oval 3 inches deep in water and mud, without my spectacles, and without a helmet, for the fun of it. I also attended swimming classes for several years at the local beaches and was a good swimmer, and would go canoeing in the sea and rowing in rivers, and dive off jetties, and do summersaults down sand hills. I never had a fear of swimming or sport, and I was a gymnastics instructor for five years and a gymnastics leader for an additional five years, and I could easily summersault from springboards over 5 foot high vaulting horses, and I was often the first to arrive at the gym and the last to leave. I have had natural aptitude for some sports and none for others, and have been among the best and worst in teams in some games, and have had all of the cuts and bruises that occur in anyone who plays sport for more than 10 years.

2012

I found an article published on the website of the Hunter-Hopkins Center, P.A. by Charles Lapp, and Laura Black Called “Relapses and Flare: Dealing with relapses and flares” .

The chronic nature of the CFS and how to adapt to it

I have seen many definitions of the Chronic fatigue syndrome but they all include the main symptoms of chest pains, palpitations, breathlessness, faintness and fatigue – and problems with exertion.

However, those symptoms are often presented in texts or lists but are not mentioned in order of prominence, but are generally included in random order on a list of 10 or more which include muscle soreness, swollen lymph glands, abdominal pains etc. Nevertheless, the main ones are always there.

It is also said that the diagnosis is not given unless the person has had the symptoms for at least six months or more. It is also generally said or implied that there are various cures available. However, while it does appear that some people who have had a mild version of the condition for a short time do recover, the vast majority continue to have the symptoms recurring throughout their life.

I have personally interviewed and met people who have had the problem for much more than 20 years, and although they have adapted well to their limitations, they still have problems with fatigue, and there are research studies which followed the lives of patients for 20 years or more, and provide similar information.

It has also been generally advised to reassure patients by telling them that it is not a permanent problem, or that one form of therapy has been proven effective as a cure, or that a cure is imminent, and of course, some people use the the ‘victim blaming’ tactic of blaming the failure of treatment on the patient.

Whilst reassurance, is, of course, a sensible thing to do, it has to be said that after a few years the doctor simply ceases to have any credibility, and the patients don’t believe it any more, and further reassurance is a complete waste of time.

The false reassurance certainly doesn’t make the chronic, incurable problem go away.

It is relevant for me to now mention that some years ago I became interested in Dale Carnegies book called “How to win friends and influence people”, and it contained an item about teenagers who become paraplegics after a car accident. He wanted to know how they dealt with the news that they would never walk again, and would always be stuck in a wheel chair. He was told that at an early stage the doctor has the difficult responsibility of giving the bad news, and that false reassurance, and false promises of a cure was a waste of time because it would just delay the teenagers process of adapting to the changes in their lives. He was also told that for the first 12 months the teenagers go through periods of denial, and then anger, and then fear, and then depression, but that sooner or later they accept their fate, and get used to the idea without being miserable. From what I can recall he gave the example of boys who were going through a shopping centre in their wheelchairs and laughing amongst themselves about the “wheel deficient” shoppers.

As far as the chronic fatigue syndrome is concerned, many patients worry about their symptoms, and about fifty percent are depressed after about five years, and some go mad or commit suicide. I suspect that it is due to false reassurance, and false hope that there is some sort of cure coming up the next day, with the next pill, or the next research discovery. However it never happens so the patient is always dealing with disappointment, and consequently never accepts or adapts to the chronic nature of their condition emotionally.

Many people with chronic fatigue would probably be much better off if they accepted their limitations, and led their lives within them.

The problem isn’t exactly that simple, but it is also not impossible to deal with.

Expecting, or demanding the CFS patient to do the impossible

There are many illnesses which are not properly understood and cannot be cured, so regardless of what type of treatment is given the person will have to learn how to relieve the symptoms as effectively as possible and live with it. Typical of those is asthma, or diabetes.The asthma involves allergies, so the person needs to avoid such things as environmental pollens that trigger the breathlessness, and diabetes involves abnormal responses to various foods that affect insulin levels, so they have to be careful with their diet, and may have to have daily injections of insulin to maintain stable health. In the case of the chronic fatigue syndrome it is necessary to make changes to lifestyle to reduce the reduce the demands for energy etc.

However, there are many doctors who don’t want to admit that they don’t understand the problem and have failed to cure it, or that their choice of treatment has failed, so they pass the burden of proof onto the patient who is uneducated and never read a medical book in their life, and they blame them them for the failure of treatment by saying such things as this . . . “The “patient” is a “therapeutic failure“.

The issue is this . . . If the doctor can’t cure it, and if the best scientific researchers in the world can’t cure it, and if the best treatments can’t cure it, then it is unreasonable and unethical to expect the patient to cure it.

The Banfield Principles for CFS activities

If you can walk one step at a time for long enough you canwalk a mile, or ten.

If you can lift one kilogram at a time for long enough you can move a ton.

If you can write half a page of text per day for long enough you can write a thousand page book in six years.

I am not recommending it, but merely pointing out to any nitwit who says I’m lazy, that it is exactly how I did it, and the only way it was ever going to be possible.

The Chronic Fatigue Syndrome
The Banfield Proof

of Physical Cause ©

Posture, pregnancy, corsets, viruses, chemical exposure and

Postural & Mechanical Hypotension
As a cause of tiredness, sleep and exercise disorders, and other related symptoms.

Anyone who still disputes that CFS has a real physical basis has the onus of proof to scientifucally explain the symptoms described on this webpage in some other way.

8-2-2005

Removing The Confusion

Before discussing this type of chronic fatigue it is necessary to clear up some confusing aspects of the subject, otherwise people who have other types of the condition will be sceptical and argumentative at the outset and will not even bother to examine the facts, and doctors who do not understand the difference between normal tiredness and the most severe types of chronic fatigue will continue to say to their patients “What are you complaining for; we all get tired sometimes”.

There are two types of normal fatigue

There are two types of chronic fatigue

There are two other confusing aspects to consider

Two Opposite Pyschological Possibilities; Is it Cause
or Response

Psychological or Physical

Three Outcomes for chronic fatigue

There are many different causes of Chronic Fatigue

(Some causes may produce a common fault – damage to the vena cava? and, or postural hypotension)
The Vena Cava syndrome

Throughout history chronic fatigue has been a common aliment, and it has been given more than 100 different labels. There have also been more than 100 different suggestions about cause, and as a result there have been many heated and hostile arguments about whose idea is correct and whose is wrong. However, I, and others have suggested that there may be many different types, and several different causes, which could mean that none of the people in any particular argument might be wrong. The might just be talking about a different type or cause. It would seem that the best thing to do would be to present some sort of united study of the ailment, or group of ailments.

The Severity of Postural Hypotension and Chronic Fatigue as a basis for a theory on mechanical hypotension as the cause. © 5-8-05

Many people experience postural hypotension temporarily and make a full recovery. For example, some teenagers grow rapidly and their lower spine sways forward as they become thinner and taller. They generally develop postural hypotension, probably because the sway back presses on the abdominal veins, or because the rapid growth of the spine stretches those veins and impairs the flow of blood to the heart. This gives them a tendency to feel faint when they rise from the laying to the standing position, particularly when they get out of bed each morning. However as they reach adulthood their body fills out and the feature of postural hypotension ceases to be a problem. Pregnant women also tend to develop postural hypotension because the weight of the enlarging womb drags their spine forward, and also because it sits heavily on the lower abdominal veins. The tendency to faint varies throughout pregnancy depending on the weight and position of the womb, and although the symptom usually ceases after giving birth, sometimes the symptom persists in a chronic way.

There are various suggestions about the cause of postural hypotension including the ideas that it is due to hormonal factors, or a disorder of the nervous system, and it is a chicken or the egg matter. i.e. Do the hormones or the nervous system abnormalities cause the weakness in blood flow, or does the weakness in blood flow put the hormonal or nervous systems into compensatory action.

Nevertheless there is evidence that mechanical factors cause impairment to blood flow, and it is likely that the persistent or repetitive pooling of excessive amounts of blood in the abdominal veins stretches and damages them. That would increase their capacity permanently and result in a chronic tendency to postural hypotension where the responses of the hormonal and nervous systems would be secondary.

Impairment of blood flow to the heart would produce firstly, problems during vigourous exertion (effort intolerance – where the person refuses to exert themselves suddenly or viguourously because it brings on abnormal and distressing symptoms of rapid palpitations, faintness, and dizziness), and secondly, problems with weakness in blood flow to the brain resulting in abnormal tiredness. Postural hypotension, effort intolerance, and chronic abnormal tiredness are features of The Chronic Fatigue Syndrome, but not all people with CFS have evidence of postural hypotension, so the idea that the hypotension is the cause has been the subject of debate.

Nevertheless there are differences in the severity of CFS between individuals, and in the life history of patients. Sometimes CFS appears to be genetic, and other times it appears to have a very gradual and insidious origin, but typically the first bout of fatigue can be traced back to an incident, such as pregnancy, a viral illness, or chemical exposure. In such cases the original experience reached a peak of fatigue which impelled the person to take rest for months or years, during which time they gradually recovered but remained permanently impaired to a lesser degree. There are also typical examples where there were years of minor fatigue, interspersed with brief periods of more severe fatigue. It is therefore likely that the postural hypotension is a chronic latent feature which is only evident during severe cases or with the relapses.

In severe cases of CFS the symptoms tend to be worse and more numerous and varied. One of the prominent symptoms is postural hypotension and the obvious indication of weakness in blood flow is the tendency to feel faint when moving from the laying to standing position, especially when getting out of bed in the morning when patients report the they have to stand up very slowly to avoid feeling faint. Other less common observations are the sense of faintness which patients report when they lean toward a desk to write, or when they lean toward the washing machine to drag clothes out, or when they lean toward an ironing board to iron clothes, or when they lean toward the kitchen sink to wash dishes. They may also feel faint and dizzy if they squat down and lean forward to clean low windows, or when they apply the brakes suddenly while driving a car and their body is thrown forward, or when they are a passenger in a car which speeds around a curve in a country road and throws their body sideways, or when they are sitting in the chair of a rotating amusement ride at a carnival. Many patients report feeling an extremely distressing form of faintness when their body is being moved up and down and sideways at all angles on a tilt table while having some types of x-ray. All of those factors have a mechanical effect on the body, and the response is often immediate, so the condition is clearly mechanical hypotension.

If the veins below the midriff, or all veins leading to the heart, i.e. all of the venous system was stretched and had greater capacity, then there would be a tendency for blood to pool excessively in response to any obstruction to blood flow. Therefore if a person stood up suddenly the blood would pool below the waist in response to gravity increasing the weight of the blood, and it would tend to pool below the midriff if the person leaned forward and compressed the air in their chest, and it would pool in the legs if a woman was pregnant and the heavy womb was compressing the abdominal veins behind or the pelvic veins below, and it would pool in the extreme outer parts of the venous system if the body was subjected to any type of centrifugal force.

Therefore there is evidence that mechanical factors can cause damage to the walls of the veins to produce postural hypotension which is in turn responsible for the symptoms of chronic fatigue (effort intolerance and tiredness), However, those veins would have some resilience, and therefore some ability to recover, which would explain variations in the severity of the condition at its onset, and variations in the severity between individuals, and variations in the recovery times, and it would also explain the chronic nature of some cases, and the fluctuations in the course of the condition in others.

Putting the Mechanical Hypotension Theory for CFS to the Test (for those who wish to confirm or dispute it) Posted 5-8-05

Any medical research group or patient organisation could easily test this theory and determine the presence or not of proof of a physical basis for CFS by using the following methodology.

1. Gathering 200 patients who report the symptoms of CFS

2. Testing the aerobic capacity of those patients using ergometric cycles and cardiographs

3. Selecting the 100 patients with the lowest aerobic capacity

4. Attaching blood pressure monitoring equipment and cardiograph leads to the patients.

5. Measuring the resulting data while the patient is being tilted up and down at various angles and rotated at various speeds on a tilt table.

6. Documenting the results for public review.

Proof is in establishing that an experiment 1. can be replicated

2. That the results are predictable

3. That the results are consistent

4. That the experiment is performed independently by several investigators

5. That the results are different from those of a control group (of healthy patients)

Some Notes on the Matter of Proof

1. When some people refer to the chronic fatigue syndrome as trivial they are not basing their statement on a scientific measurement but are merely giving an opinion (a reckless and irresponsible guess)

2. When people say that the condition has a psychological cause they are not suggesting that every patient with CFS is anxious or depressed because that is simply not true. They are basing the idea on the absence of absolute proof of physical cause and typically arguing “if it is not evident on physical tests it must be psychological, otherwise there is no other explanation”. Of course they are not looking very hard for other explanations or they would have found countless possibilities.

3. The suggestions on this web page can be tested by anyone who wishes to do so and some matters are worth considering in relation to postural hypotension (a type of faintness which is brought about by standing up too suddenly or by other similar acts which are entirely physical and mechanical).

(a) If pregnant women feel faint because of a fear of pregnancy and childbirth then why do they only feel faint at particular periods of the pregnancy, and if it is not due to the weight of the womb pressing on abdominal veins then why is it aggravated when they lay on their back and relieved when they lay on their side.

(b) Why so some women during and after pregnancy, feel faint and giddy and get exhausted when they lean toward a sink, or an ironing board, and why does their heart pound when they lay on their back at night when they go to bed.

(c) If nineteenth century women felt faint because of multiple fears then why did their symptoms ease when they loosened the laces of their corsets and layed down on a chaise lounge.

(d) If patients are afraid of having their x-ray taken on a tilt table then whey aren’t they afraid of having a plain chest x-ray while standing, and if they are afraid of tilt tables then why do they only feel faint when the tilt table is moving, and why does the faintness vary in intensity with the angle of the table, and the speed of the movement, and why do they stop feeling faint when the tilt table stops moving.

(e) If patients feel faint during some postural movements then why do they feel faint when slumping and leaning forwards and not when leaning backwards

(f) If the faintness is not due to mechanical factors and, or, weakness in the walls of veins, then what is the cause.

4. If the patients are afraid of exercise, why aren’t they afraid to walk, and if they can move at a measured or gradual pace why do they have problems with sprinting, and if they can walk on flat land or up slight hills slowly, why can’t they walk up steep slopes, and why is it that some of them were former athletes who never had any problems with any type of exertion, and why do some of them voluntarily participate in experimental exercise programmes and attempt to cure their health problems by improving their fitness.

5. Why do their hearts pump less blood during and after exercise compared with healthy people (do their veins stretch excessively in response to exercise and reduce the volume of blood returning to the heart chambers, and does that make the heart beat faster and more powerfully than normal in order to draw the same amount of blood up to its chambers each minute during vigorous exertion?).

6. Why do CFS patients have a measurably low earobic capacity and why does it remain low despite participating in exercise programmes.

7. If the cause of CFS is not physical then why do patients have abnormal breathing patterns during exertion (breathing becomes shallower, oxygen consumption is lower, and blood lactate concentration is higher), and why do they experience an elevated pulse rate for a prolonged period after exertio.

8. Why do they have poor breath holding capacity and an intolerance for CO2 and to wearing gas masks.

9. Why do they complain of aerobic distress when a cardiograph belt is strapped tightly to their chest but not when it is loosely strapped

10. If the symptoms above are not more likely to affect people with thin and stooped physiques who have long, narrow and flat chests then why was a life sized portrait of such a person painted by Ian Tillard and put on permanent display in the museum of the Post-Graduate Medical School of London (with reference to the Effort Syndrome). A photo of this portrait can be seen on page 941 of the book entitled Diseases of the Heart and Circulation by Paul Wood, published by Eyre & Spottiswoode in London 1956.

11.If the problem only effects timid softly spoken patients who are anxious, afraid of exercise, and depressed, then how can it be explained that some of the patients have formerly been confident athletes, and show no signs of anxiety or depression, and may be confident public speakers, while others show anger and hostility toward their own doctors (as reported in the medical literature).

Scientific proof of the tilt table method

Regarding my suggestions that tilt table test could be used as a means of testing for CFS, one of the main symptoms is faintness when standing up suddenly, which is also called orthostatic intolerance. The tilt table test is now being used as a method of testing for orthostaitic intolerance, so the method has been scientifically confirmed as correct. See here http://www.dizziness-and-balance.com/testing/tilttabletest.html

I was also referring to postural Valsalva’s maneuvre as a cause, and the laboratory use as a diagnosis which is now verified in the same website article.

Note that all of the references are recent from 1999 to 2009, compared to my suggestions of the relevance of tilt tables and symptoms from the 1970’s.This is one of the modern references; Kurbaan, A. S., A. C. Franzen, et al. (1999). “Usefulness of tilt test-induced patterns of heart rate and blood pressure using a two-stage protocol with glyceryl trinitrate provocation in patients with syncope of unknown origin.” Am J Cardiol 84(6): 665-70.

See also here http://www.gregpage.com/oiandd.html

Choosing the Best Explanation

When making a decision about the nature of an ailment it is not just a matter of accepting the only explanation available but of considering various possibilities and deciding the best for now.

In that regard the ideas of a psychological cause are based on a medical theory rather than objective fact

For example when consulting a doctor the patient may be told that there is no evidence of disease on an x-ray so the condition cannot be phyically based and must therefore be due to anxiety, and then, when the patient says that they are not anxious the doctor may believe that he is lying, or faking, or is suffering from sub-conscious anxiety, or does not know their own mind, or is out of touch with reality or is denying the presence of a psychological cause because of some presumed shame which the patient feels in relation to admitting to having a mental rather than a physical illness. All of those ideas seem plausible but are simply not valid for the following good reasons.

1. Many patients say that their symptoms could not be caused by anxiety simply because they are not anxious and the symptoms often exist in the complete absence of anxiety, and when other people suggest the presence of sub-conscious anxiety they are regarded as being disrespectful and annoying. Nobody likes being accused of being a liar or of not knowing their own mind and hostility toward such suggestions is perfectly normal

2. The reason patients say that their symptoms must have a physical basis is because they occur in response to physical, rather than emotional events. For example the symptoms are made worse by physical exertion, and higher levels of exertion are almost exclusively likely to bring on symptoms which are not evident at rest, or with mild exertion. Secondly the symptoms such as fainting are brought on by physical, not mental activities such as leaning or stooping or squatting, and by participating in activities which involve centrifugal forces, such as riding on swirling carnival wheels. Patients are not going to believe that those symptoms have a psychological cause no matter how many slick arguments are presented to convince them, simply because nobody is that gullible.

When deciding whether the symptoms of CFS are real or not, or physical or not, it is necessary to consider all the facts, not just opinions.

I would not be so arrogant as to expect anyone to believe what I said about this condition simply on the basis of my opinion, and no-one else should expect the public to be that mindless and gullible. It is a matter of making a decision on the basis of the facts, and that can only be done when all possibilities are explored, not just one.

The Myths of Chronic Fatigue There are many false beliefs about the nature of CFS that continue to be mentioned in medicine and the media despite the fact that they are ridiculous and have been discredited many times over the past century.

1. That people with chronic fatigue are complaining about the sort of normal fatigue which an ordinary person would not be bothered by.

2. That chronic fatigue is a brand new condition of modern times

3. That the chronic fatigue syndrome is a rare condition

4. That people with CFS refuse to participate in exercise programmes because they are afraid of exercise, and that they could cure their condition if only they could overcome their fear of exercise and improve their fitness.

4a. That people with CFS are tired because of a lack of exercise and poor physical fitness.

4b. That if they simply forced themselves to ignore the symptoms they could exercise like everyone else

5. That people with CFS did not play sport as children or teenagers and are afraid of competitive sport.

6. That people with CFS are afraid of heart disease, and don’t know the difference between CFS and heart disease

7. That people with CFS are anxious or depressed about something obvious or subconscious.

8. That thinking positive and ignoring fatigue will enable the person to continue with the same normal lifestyle as anyone else.

9. That people with CFS are abnormally introspective and pay too much notice to the bodies normal function and misinterpret the normal beating of the pulse and normal functions of breathing and digestion as abnormal, and that they don’t know enough about medicine to recognise the difference between normal and abnormal body processes.

Learning From History Comparing 19th century Antwerp Fever with 20th century Chronic Fatigue Syndrome In the nineteenth century the diagnosis of Fever was given to anyone who had an elevated body temperature, and as the thermometer had not been invented then, the diagnosis was made when the physician placed his hand on the patients forehead and noticed that it was abnormally hot. Infectious illnesses raise body temperature, but in those days there were no microscopes so doctors could not see the microbes responsible, or tell one infection from another, . Therefore, for example, any and every illness which caused a rise in body temperature in the city of Antwerp came to be diagnosed as Antwerp Fever, and some medical historians have estimated that they included typhoid, typhus, malaria, pneumonia, and tuberculosis, Those illnesses often presented themselves to doctors without any obvious identifying signs of spots or rashes etc. Furthermore there were no treatments available because antibiotics had not been invented so the infections of the liver, stomach, kidneys, or lungs often spread to the brain causing meningitis or encephalitis. The inflammation of the brain caused delirium which involved nightmares and sometimes bizarre or violent behavior. For this reason it was common to diagnose on the basis of survival. If the patient died they were diagnosed as having the fever, and if they lived they were told that they must have been complaining of something trivial, or that it was caused by their mind, or evil spirits. Furthermore many plagues occurred in the nineteenth century and if patients contracted several of them over a period of years, and survived the illnesses which ended in delirium, they were diagnosed as having a life history of mental illness. Many doctors of that time in history did not accept the germ theories even when they were first proposed because they couldn’t believe that something so small could kill humans, and they were not going to believe it until they could see for themselves, only after microscopes came into common use. In the meantime they would visit one patient after another without washing their hands or instruments, and would go coughing and sneezing, and spreading the plagues that they were trying to cure. Since then the inventions such as thermometers can measure the severity of body temperature accurately, and microscopes can reveal microbes and identify the types, and immunisation techniques can prevent the ailments, and antibiotics can cure the problem before it spreads to the brain to cause bizarre delirium or death, and such patients do not have their sanity questioned.

However, in the 20th and the current 21st centuries there are many people who persistently complain of a different group of problems which feature fatigue, but there is still no established way of measuring it’s severity, or of identifying the different causes, or of reliably treating it. The problem is referred to vaguely with the same words The Chronic Fatigue Syndrome. Despite this, quite often patients can’t get a diagnosis, because doctors don’t accept the existance of the condition, and even then, the patients can’t get an explanation, a diagnosis, or a cure, so many of them worry or get depressed by their predicament which is often diagnosed as psychosomatic, and when recurring bouts of fatigue occur throughout the persons life they are generally described as having a medical history of mental breakdowns. The purpose of this web page is to identify different types of fatigue, and different causes, and possible common causes, and various effective treatments for some of the symptoms, and to suggest ways in which the condition may be further investigated so that in 10 years or 100 years from now the ailments will be clearly understood and diagnosed and treated, and will cease to be a problem, in much the same way as highly contagious plagues or Fevers are now less of a problem for patients, doctors and society.

In the meantime: People who don’t learn from history repeat the mistakes of history. About My Personality

When I attempted to learn about the cause of the health problems of Robert Louis Stevenson I found that some biographers described him as an heroic adventurer who sailed the high and stormy seas and toured the world despite suffering from the plagues of tuberculosis, pneumonia, typhoid, and malaria which killed millions of his contemporaries. Other biographers described him as a whinging, sympathy seeking hypochondriac who was troubled by deep seated psychological problems and emotional insecurities that dated back to his early childhood.

That is an example of how a personality is determined by the individual but an interpretation is determined by others.

I have no particular interest in talking about my own personality other than to say that it compares favourably according to my observations of the world. The comments are made on this webpage because it is popularly believed that all people with chronic fatigue have anxious and troubled minds where anxiety is the cause of their symptoms, and that their reluctance to exercise is due to a fear of exercise, and that they complain excessively about trivial illness in an attempt to get sympathy, and that they would not know how to cope with a serious illness if they had one, and I do not believe that to be true.

I have survived more than 100 illnesses and injuries. For example 10 years ago I had bladder surgery and complications included several bouts of bladder blockage which was more painful than the pain of kidney stones, and that was followed by the cystitis of urinary infections. A specialist told me that blood tests and a CAT scan revealed that my body was riddled with incurable cancer and that I would probably be dead in 2 months. I walked about with post operative bladder ache for 8 months. About a year later I had further bladder surgery during a hospital staff strike. I underwent surgery while suffering from untreated high blood pressure and came out diagnosed by ultrasound as having a strained and enlarged heart and incurable high blood pressure and was advised to avoid strenuous exercise and take anti hypertensive drugs for the rest of my life. After learning about post-operative procedures during the previous surgery I recovered from the second bladder operation in a month. Since then I have had several other major problems including angina symptoms which I treated with a disciplined vegetarian diet rather than having bypass surgery. The symptoms subsided gradually over a 6 month period but I did not recover fully until another 18 months had passed. I also tried to cure the cancer with a 6 week fruit juice only diet. After 4 weeks I became exhausted so I ate some food but that gave me food poisoning and I was unable to eat for another week because of severe nausea and vomiting. Some time after that I had surgery to remove a 5 cm cancerous tumour from my neck, and the following day I walked for 2 kilometers. Shortly after that I started CHOP chemotherapy where I lived like a hermit for 6 months to avoid contagious infections as my immune system was depleted. 18 months later I had more surgery to remove a 10 cm cancerous tumour which was partially blocking my left kidney. That surgery left a 12 cm scar across the left side of my abdomen, and 5 days later I walked at least 5 kilometers down the beach. About a month later I started DHAP chemotherapy and that was followed by a stem cell transplant. Three doctors tried to convince me to use a self administering morphine machine to control pain and advised me that 90% of patients did so for a fortnight. I only had one morphine injection on the first day and declined the offer of the machine. Some other patients had very little nausea but the surgery and chemo left me ill and nauseas for 10 months, followed by another year of poor appetite. I then contracted a coughing virus which lasted for 6 weeks during which time I was bedridden for a month and my doctor advised me to get an ambulance and go to hospital where I spent a week with recurrent fevers and sweats, and was on tablets and a drip to offset the effects of dehydration, and oxygen to help me breath. The virus could not be detected or identified by blood tests.

By contrast I have met a 70 year old man who told me that he never had a sick day in his life, and I know of at least two people who have not had a days sickness of any significance in 20 years.

I am not afraid of spiders or snakes, and I am not afraid of sharks but am sensible enough to avoid the ocean and swim in pools and sometimes do so in those which are 20 feet deep. I am not afraid of public speaking which is reported as being the commonest fear which affects 90% of the population. I am not afraid of exercise and I am not afraid of disease, or death. I find it difficult to take life seriously and I often tell jokes and laugh a lot.

However, I have seen billionaire corporate criminals who live in mansions and float about on multi-million dollar yachts and cry and beg for sympathy on public television, and others who carry worry beads and look miserable and spend time in psychiatric hospitals and ultimately commit suicide after being charged with corporate crimes, and I have seen media personalities and politicians succumb to severe depression after their promising and prosperous careers were stifled, sometimes by their own folly, and I have seen movie stars who have had leading roles in 100 movies or plays who say that they had stage fright when they were young and still get stage fright every time they walk on stage 50 years later. I have seen sporting champions, Olympic athletes and mountain climbing adventurers talk about how they had one illness which threatened their activity and their life, and they have described it as the greatest challenge that they have ever had to deal with. M.B.

The Chronic Post – Q Fever Fatigue Syndrome

Query-fever on ABC TV

About 30 years ago I had health problems which were becoming progressively worse until they were seriously interfering with my capacity to do anything, including work. My doctor was unable to find evidence of disease regardless how bad the symptoms became, and the treatment was ineffective, so I eventually applied for sick leave, followed by recreation leave, but the symptoms weren’t relieved despite the rest, so I then applied for 12 months leave without pay in the hope of recovering. Ultimately I was left with no choice but to get more leave, or to resign and go on a pension, which would have amounted to 40% of my salary. However, I was then referred to a psychiatrist who asked me a lot of irrelevant questions, and then an administrative officer said that I would have to go back to work and work hard or be sacked.

I was advised by a Trade Union official to challenge the position but my health was so poor that I decided to resign, rather than go through the harassment of trying to convince any one that I had health problems when I had no medical evidence to support my claim.

My objective was to continue resting in the hope of gradually returning to normal health and then find some other form of occupation. In the early stages I began reading medical books to solve the mystery for myself, and I discovered that my symptoms corresponded to DaCosta’s syndrome. One of the main symptoms was a complex form of fatigue which is nowadays called The Chronic Fatigue Syndrome. I tried to solve those health problems by reading a paragraph of medical text for 5 minutes in the morning and then laying on my back on the carpet and staring at the ceiling for the remainder of the day, trying to identify and understand the aggravating and relieving factors with the simple objective of removing the aggravating factors and including the relieving factors until I could make a steady improvement in my condition.

During those early stages I also overcame boredom by listening to radio, and then turned to ABC radio because of their reputed attitude about proper use of the English Language, which might improve my ability to understand medical text. I heard a lot of doctors making statements in the name of medical science which were rash assumptions, tripe, or lies, so I became a talk back caller.

I frequently criticized doctors with ranting tirades, but the announcers had a discriminatory attitude toward doctors and treated their statements as the infallible truths of educated men, and treated people like me as ignorant uneducated people who weren’t qualified enough to give credible criticism, and who had trivial and mental rather than real problems, and didn’t know their own minds, or were simpletons who didn’t understand the complexities of disease.

I was often restricted in the number of times I could speak on radio ( to once per fortnight for two minutes under rigorous and almost vindictive cross examination), yet doctors would talk on radio for 15 minutes three times a week and be free to speak any ridiculous tripe they wanted to without question.

I adopted the tactic of using false names and addresses to get on radio more frequently.

Nowadays most of those doctors and radio announcers have died or have retired early with very healthy bank accounts.

It therefore entertained me to watch the ABC TV show Landline, on Sunday 27-11-05 when an ABC radio announcer – Kendall Jackson, from Port Pirie, reported her experience with Q-fever.

After suffering from some headaches, and thinking that they might be migraines, and then having really severe night sweats which saturated her nightwear, and then hot and cold spells, she thought that “something was majorly wrong” with her and that she was going “insane” so she consulted her doctor who diagnosed the flu.

Some time later she was doing a report about Q-fever in the local community and noticed that the people who she interviewed were describing similar symptoms to those that she had experienced

She then reconsulted her doctor and he confirmed that it was highly possible that her problem had been Q-fever.

The diagnosis of Q-fever is an abbreviation of “Query Fever”, because, when it was first discovered in Australia in the 1930’s its nature was a complete mystery – there was a query, or doubt about it, but since then it has been found to be present in almost every county in the world

Kendall Jackson was later interviewed on ABC TV show Landline, and as part of their investigation into Q-fever they contacted.
the Australian expert on the disease, Professor Barrie Marmion, who said that Q-fever is contracted from the droplets of moisture which enter the air from the placenta of infected cows during the birth process, and Kendall Jackson had been to a cattle yard just prior to her illness, for only 20 minutes. The condition can also be contracted from contact with infected sheep or goats, and typically affects people involved in the meat industry such as auctioneers, shearers, truckies, farmers, and of course “even rural journalists”.

Kendall Jackson also learned that there is sometimes a relapse of symptoms during pregnancy, and as a woman who had been pregnant, and who intended to have two more children that is an important thing to know.

Included in the Landline report were aspects of the money, and politics, and intrigue of the problem

Q-fever involves flu like symptoms such as headaches, and joint pains – hence the common misdiagnosis of the flu. The condition is usually temporary – just like the flu is usually temporary and over in a few weeks, but it has been only recently discovered that in 8-10% of cases the condition leaves a state of chronic fatigue. In particular, in the 1980’s while doing vaccine trials in Adelaide abattoirs, Professor Marmion found people who had previously contracted the condition “and they hadn’t got over it and they were lethargic and they really couldn’t cope with exercise which they normally achieved easily, and so on, and there were very few localising physical signs, except this general disturbance of various body systems”. >

One patient reported that he contracted the ailment while working on the slaughter floor as a meat inspector. He initially felt unwell and dizzy when one of his co-workers suggested that he see the factory nurse who told him that his blood pressure was extremely low. Since then he has had headaches and joint pains, and memory problems which were so bad that sometimes he couldn’t remember his own phone number. He also had sleep problems. During the first year of his ailment he would suddenly feel as if he was melting into the earth as he fell into a deep sleep at any unpredictable time. His wife said that his sleeps were so deep that she was scared that he was dead, or would never wake up. He felt that eventually he would get over it. but the problem persisted and he had to leave work. Eventually, After a battle with an insurance company he managed to get compensation payments equivalent to 75% of his former salary.

Of course that is where the politics of medical opinion arises – in the cost of disease to the meat industry.

The meat industry has a liability to pay for the cost of occupational illness, and Q-fever is a clear case of that.

They deal with this liability by having a policy of providing free Q-fever immunisation injection to all employees, to prevent the problem, with their policy summed up as “no jab, no job”. More than 85,000 doses of vaccine were given in a five year period.

Such a policy keeps the employees healthy, and saves the employer money – it suits everyone.

However, the 300 or more cases per year of temporary Q-fever cost the industry 1.3 million dollars per annum, but the cost of the chronic cases can be up to one million dollars per worker.

For that reason representatives of the meat industry are “nervous about discussing it” (it might create a rush of costly compensation claims), and reporter Prue Adams found that all attempts to interview the meat industry officials was met with refusal. They said that they didn’t want to because they might “become the target of common law claims”. . .”And compensation for Q-fever certainly has the potential to blow out “. . . “It’s big money”.

I would like to congratulate the Landline TV show for their informative programme.

The ABC Landline programme has given a good account of the cause, nature, prognosis, economics, politics, and intrigue of a “Previously Undetectable and Unknown Illness” – The Chronic Q-Fever Fatigue Syndrome, which is stereotypical of other types of Chronic Fatigue Syndrome, which has multiple causes, including Post Viral Chronic Fatigue Syndrome – i.e. conditions which are still the subject of much query, question, doubt, debate, politics, and intrigue – with suggestions that the conditions do not exist.

As Professor Barrie Marmion stated “I think that we badly need, for instance a decent diagnostic test for post-Q fever fatigue syndrome”.

The Medical History of The Chronic Fatigue Syndrome and Stomach Ulcers

1975 In 1975 I was the beneficiary of the best of medicine, but I was becoming the victim of the worst of medicine, so I began to study my own health problems, and I also began to study the medical profession.

In 1975 Many researchers regarded chronic stomach ulcers and chronic fatigue as psychosomatic disorders for ‘sound scientific reasons’.

They observed that the lining of the stomach went pink when patients were subjected to stress, and it was said to be scientifically impossible for bacteria to cause ulcers because the stomach acid would destroy them.

They could not find any scientific evidence of organic disease in patients with chronic fatigue, and claimed that the patients were ill, only because they believed they were ill.

1995

In 1995 two Australian doctors, Robin Warren and Barry Marshall, were curing 95% of stomach ulcers with a 1 week dose of antibiotics, and chronic fatigue was officially recognised as a real medical condition by the Astralian Medical Association.

1975-1995

Between 1975 and 1995 patients were told to ignore their pain and fatigue and continue to work despite their pain. (Go back to work and work hard or be sacked). Many were forced to resign without compensation, superannuation entitlements, or pensions, and lived in poverty on unemployment benefits. Tens of thousands of them died from medically prescribed overdoses of Valium or barbiturates, or became depressed, went mad, or committed suicide.

2005

The Australian doctors who developed the antibiotic treatment for stomach ulcers were given The Nobel Prize For Medicine and said that there was a great deal of resistance from other doctors who refused to believe that it was not a psychosomatic disorder.

Some doctors still believe (or pretend to believe) that chronic fatigue is just normal tiredness. Their science is flawed or false or fake. (All talk and no cure).

The cost of disease to the national economy is the real hidden reason for blaming patients for disease. Nobody in authority considers the economic ruin of patients.

Consider this, the Nobel Prize winning doctors said (jokingly) that it is difficult to study stomach ulcers nowadays because they have become rare. Consider the number of ulcer patients who have been cured, and no longer complain of pain, and what changes that has brought to their life. Consider what would happen if doctors developed a real cure for the chronic fatigue syndrome. M.B.

About the author of this web page
(added on 2-11-05)

This section contains a brief biography of my experience with chronic fatigue and exercise

In the process I had the opportunity to discuss my own results with a research cardiologist (fitness readings from zero to 350 and plateauing) and I asked him if that was convincing scientific evidence of my condition being real and physical. The exact words in his blunt reply were astonishing and given in a resentful tone of voice; he said “No! that means nothing!!!” I got the impression that he was jealous of a non-doctor making a credible scientific discovery and proving some old theories wrong, but I wasn’t trying to prove anything. My objective was to solve my own problems, and offending doctors was just creating more problems.
Also I must say that I had courteous relations with most of the staff and doctors who were co-operating with me in the research, and because of my role as co-ordinator, I had access to the premises on a regular basis. However when I wanted to access my own file out of curiosity about the medical opinion given about me, I was advised that it was not standard practice to give non-doctors permission to read them. Nevertheless, I made a point of waiting until the staff were out, and went into the file room and read my own records. Within the text were the typed words “This man is a hopeless hypochondriac”. This made me furious so I stormed out of the building telling everyone in sight that they were all useless idiots. After calming down I apologised for my outburst, as most of them were not responsible for the remarks. In the meantime I decided that I could only rely on myself if I wanted to get any useful understanding of the problem.
(Regarding the doctor who diagnosed “hopeless hypochondriac” – When I first met him I was suffering from dozens of symptoms, including breathing difficulties, faintness, and dizziness, and my heart was pounding violently in response to the slightest exertion. I vaguely recall having difficulty walking from my car to the Institute building, and then I found it difficult to get up the stairs to the medical room on the first floor, and then the slight effort of riding the ergometric cycle produced a fitness reading of zero. I was also withdrawing from a high dose of barbiturates, and decided to study medicine myself because my doctor was unable to account for my symptoms or treat them effectively, and I was hopeful of getting better insight from a research scientist who I presumed would know more than a suburban general practitioner. I was furious about the diagnosis of hypochondria because that meant that even research scientists were useless to me i.e. they did not take my problems seriously and were doing nothing other than providing a worthless and insulting diagnosis, and had no intentions of trying to find a cure).In the process I had the opportunity to discuss my own results with a research cardiologist (fitness readings from zero to 350 and plateauing) and I asked him if that was convincing scientific evidence of my condition being real and physical. The exact words in his blunt reply were astonishing and given in a resentful tone of voice; he said “No! that means nothing!!!” I got the impression that he was jealous of a non-doctor making a credible scientific discovery and proving some old theories wrong, but I wasn’t trying to prove anything. My objective was to solve my own problems, and offending doctors was just creating more problems.Also I must say that I had courteous relations with most of the staff and doctors who were co-operating with me in the research, and because of my role as co-ordinator, I had access to the premises on a regular basis. However when I wanted to access my own file out of curiosity about the medical opinion given about me, I was advised that it was not standard practice to give non-doctors permission to read them. Nevertheless, I made a point of waiting until the staff were out, and went into the file room and read my own records. Within the text were the typed words “This man is a hopeless hypochondriac”. This made me furious so I stormed out of the building telling everyone in sight that they were all useless idiots. After calming down I apologised for my outburst, as most of them were not responsible for the remarks. In the meantime I decided that I could only rely on myself if I wanted to get any useful understanding of the problem.(Regarding the doctor who diagnosed “hopeless hypochondriac” – When I first met him I was suffering from dozens of symptoms, including breathing difficulties, faintness, and dizziness, and my heart was pounding violently in response to the slightest exertion. I vaguely recall having difficulty walking from my car to the Institute building, and then I found it difficult to get up the stairs to the medical room on the first floor, and then the slight effort of riding the ergometric cycle produced a fitness reading of zero. I was also withdrawing from a high dose of barbiturates, and decided to study medicine myself because my doctor was unable to account for my symptoms or treat them effectively, and I was hopeful of getting better insight from a research scientist who I presumed would know more than a suburban general practitioner. I was furious about the diagnosis of hypochondria because that meant that even research scientists were useless to me i.e. they did not take my problems seriously and were doing nothing other than providing a worthless and insulting diagnosis, and had no intentions of trying to find a cure).

The History of Science and Serendipity
It has been a common enough observation from scientific history, that the answer to a mystery will be staring thousands of people in the face, before someone who is looking for it, sees it, and recognises it’s value.
I therefore presume that in 1976, when I saw that my own fitness reading was scientifically measured as zero, that I was the first person to recognise it as evidence of a measurable physical cause of a health problem, because I was looking for it, and nobody else was.
I can only suppose that thousands of doctors had seen that data before me, mixed in with data from other types of patient in fitness programmes, and have routinely assumed that it was due to lack of exercise resulting from laziness, or due to a fear of exercise.
It should also be staring any reasonable person in the face to note that, if I was afraid of exercise I would not have tried to treat my health problems by deciding, entirely on the basis of my own considerations, to volunteer for a fitness training programme, and I would not have continued with it for the best part of a year, ultimately for 2 hours per day for 6 days of the week. It is also stating the glaringly obvious, that if I was a lazy person, I would not have started reading medical books in order to solve a problem which was, as I was led to believe, beyond the comprehension of my doctors, or anyone else in the medical profession for the previous 3000 years. (I didn’t think that it would be an easy thing to do, and the study involved sitting at a desk, which was causing me a considerable amount of pain, but the task was, without any doubt of mine, an absolute necessity – This was because I had been following medical advice and taking the prescribed medications for several years, yet my health continued to deteriorate, and there was no evidence that anything was going to alter that course unless I did something about it myself).
Unfortunately there is a strategy called spin, which enables data and evidence to be dismissed, trivialised or ignored entirely, and will only ever be found by those who look for it.
When Galileo found evidence that the sun was the centre of the universe rather than the earth, his book was confiscated and he was put under house arrest, because his ideas contradicted those of the church. The church authorities new of the truth, but did everything they could to stop the public from finding it, or believing it.
Semmelweis discovered that women were dying of child bed fever because surgeons were using the same instruments that had been used and contaminated in autopsy studies. However this offended other surgeons who blocked his promotion to the position of clinical professor. They also refused to cooperate with his methods of disinfecting their hands and instruments with chloride of lime, and as a result, many women continued to die unnecessarily. Such frustrations eventually sent Semmelweis mad, presumably because he didn’t know enough about history. M.B

A Useful link on the politics of CFS

One of the objectives of my exercise research programme was to scientifically prove that chronic fatigue was due to a real measurable ailment and that it was not just imaginary, and not just normal tiredness, and the programme was entirely successful. A second objective was to determine if continued participation in that programme was effective in relieving symptoms and improving stamina, or curing the problem. The results clearly indicated that most of the individuals who participated did improve their fitness, but reached a level that was still below normal, and stayed that way regardless of continuing to exercise, and only one appeared to have returned to normal levels.

In other words the success of that programme scientifically proved that people who were persistently troubled by fatigue had a real physical condition, and that it responded favorably to three to nine months of training, and that it was, in most cases, not a cure. It was useful to some patients but only those who wanted to try it, and, obviously no person should be forced to do it, or to increase at a rate that aggravated their symptoms. The fact that they reached a degree of fitness that would not continue to improve even if they exercised also proved that they were not lazy, and that the fatigue was chronic.

I had also read the psychiatric literature and found an idea that might be useful called Cognitive Behavioural Therapy, which simply means ‘changing the information that a person has to relieve a problem’. In particular, if a person has chest pain and think it is due to their hearts, and a doctor tells them that they don’t, they won’t believe it, and will worry. However if you change the information that they have, by explaining that the chest pain is in muscles to the left of the chest, and the heart is in the centre of the chest, they may stop worrying unnecessarily about their hearts. The problem is, of course, a bit more complicated than that, but the general principle is appropriate.

I did my research in the early 1980’s and since then the term ‘chronic fatigue syndrome’ has become popular, and many research programmes have been conducted under the name of GET or PACING which means, in plain English – Graduated Exercise Training, or, walking or running at a pace that is that is within your own limits i.e. exercising within your own personal limits – and by extension – keeping within your own limits in terms of general lifestyle. Also Cognitive Behavioural Therapy has been abbreviated to CBT, and both methods have become the most popular forms of treatment.

However, some people have been deliberately trying to misrepresent those ideas, and the disinformation has become so effective that those methods have been disputed by people who actually study CFS, or run CFS societies, or actually have CFS.

The types of disinformation include . . .

The false claim that GET is a useless treatment because it doesn’t cure the problem.

Here is the facts . . . ‘You can’t cure every case of CFS, but it is still a useful method for improving the stamina for some patients, and it is still a useful reproducible method for scientifically proving that it is a real physical illness.

The following quotes come from a website that has some very useful information about the politics of CFS, but I was reluctant to use it because it is critical of Graduated Exercise Training, and Cognitive Behavioural Therapy.

“There can be no doubt that, for patients with ME/CFS as distinct from those suffering from chronic “fatigue”, neither CBT nor GET is effective, otherwise everyone would by now be cured . . . The apparent intention of the PACE Trial Principal Investigators to remove people with ME/CFS from receipt of state and insurance benefits raises a larger question than just welfare reform. It is also about the way illness is being redefined and reclassified and about why this is happening and about what forces are at work in this process of redefinition”.

See here http://www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-justified.htm

My main point here is to say that people with CFS need all of the scientific evidence that they can find, and shouldn’t be dismissing good studies, and should look toward a co-operative approach to other people who are trying to solve the same, or similar problems.

The people who want to discredit the reality of CFS are deliberately spreading disinformation to create confusion, and they want nothing better than to have CFS groups arguing with each other.

***

While I was contributing to the Da Costa’s syndrome topic in Wikipedia I had two critics named WhatamIdoing and Gordonofcartoon who were essentially doing as much as they could to delete the information and ban me and steal the information, but also misrepresent it and spread disinformation about the symptom of chronic fatigue. Their choice of wording on many topic pages before and since has been aimed at confusing normal fatigue with chronic fatigue to create the impression that they are the same. One of them has won a “prize” for writing an essay on ordinary fatigue caused by work, and is obviously raging with jealousy about me, because I have done real research, in a real research institute about a serious disabling condition of chronic fatigue.

That individual has recently written an article called “Cancer-related fatigue” which includes this statement at 1:33 on 7-10-10

“Cancer-related fatigue is a chronic fatigue (persistent fatigue not relieved by rest), but it is not related to chronic fatigue syndrome.[2] See here http://en.wikipedia.org/w/index.php?title=Cancer-related_fatigue&diff=prev&oldid=389218805

Since then that editor has found a reference for that, but I have actually had the chronic fatigue syndrome for 35 years from 1975 to 1010, and cancer and chemotherapy for 8 years from 1994 to 2000, so I actually know the difference, and yet that contemptible fool has made snide remarks about ‘anecdotal evidence’ being ‘unreliable’.

Most other editors will never notice that the ‘Cancer-related fatigue’ page was started by the same individual who is linking many other topic pages back to it.

That self-proclaimed ‘instant expert’, who has the impressive memory of a parrot, but only the brain power of a flea, and the ethical standards of a fork-tongued rattlesnake, has stolen that general information from me.

Nobody could say with any authority that they were different unless they actually had both illnesses, because there is no “officialy” “acceptable” scientific way of measuring either of them. I have said that the chronic fatigue syndrome was not made any worse or any better by the 8 years of ‘non-Hodgkin’s lymphoma, or by the two years of side effects of chemotherapy, and that a different type of fatigue only occurred occasionally for short periods of time about 2 weeks after each of five sessions of the CHOP type of chemo. The temporary nature of that fatigue made it trivial compared to the chronic fatigue syndrome. Since recovering from the chemo side effects the chronic fatigue syndrome is no better or worse than it was before I had the chemo. For more information see here https://theposturetheory.twebexponent.co.uk/about-the-author/#anchor260609

People with the chronic fatigue syndrome are attempting, under difficult circumstances, to do the right thing by finding scientific proof to confirm the reality of the problem, and that editor is doing everything to hide and discredit it, so CFS patients should do everything they can to get rid of the toxic influence of that individual who is an insidious pest.

An organisation, such as an insurance corporation, is either paying them to confuse the issue of chronic fatigue, or that editor is ingratiating themselves by doing the type of dirty work that will get them some sort of social or financial gain in the future.

Essentially, insurance companies are making profits by claiming that if you make weekly payments into their funds, they will make payouts to individuals if they later develop ‘medically diagnosabel’ illnesses‘ called MDI’s, but what they don’t tell you is that only 50% of illnesses are “medically diagnosable” to the extent of “official recognition”, so 50% of people who pay premiums and become chronically ill, don’t get payouts. i.e. the insurance companies make profits from 100% of premiums, but only honor 50% of their contracts.

There are now clear warnings on cigarette packets which say ‘Smoking causes lung cancer’, and there should be consumer warning’s on the front page of insurance or superannuation contracts . . . ‘Only 50% who become become chronically ill will get payouts’. The percentage might not be accurate, but the concept of the problem is.

Another problem that you will need to deal with if you develop CFS is that you may find yourself in a court room where the burden of proof will be foisted onto you , and your opponents will be a highly paid team of scientists, doctors, psychiatrists and lawyers. Such imbalances need to be corrected.

I tried to stop 200 million chronic fatigue patients from being swindled out of their entitlements the way I was

In 1975 I was extremely ill, but nothing showed on blood tests or x-rays so I was told that there was nothing physically wrong with me and sent to a psychiatrist who asked various questions which had absolutely nothing to do with my symptoms so it was obvious to me that he wasn’t interested in discussing a physical cause.

My health problems were almost exclusively aggravated by my work as a clerk so I continued to get worse and had to ultimately leave work, and in that process I applied for superannuation benefits which were about 40% of my salary, which was much higher than a standard pension. However, I didn’t want to be branded as a retired public servant with a mental illness because that would make it difficult for me to get a job in the future, if I ever recovered.

I also didn’t want to go through a process where a tribunal of men twice my age would badger me with questions and demand proof of disability when I didn’t have any medical evidence to back me up, so when I was told to go back to work and work hard or be sacked, I went home home and wrote a letter of resignation the next day.

My health problems were extreme, and I decided that it was better to leave my job alive and sane rather than being harassed and made worse.

In other words I was effectively swindled out of my entitlements.

The only sensible thing to do was to study medicine very slowly myself, and try to determine what was wrong, and develop my own ways of treating it, but despite all the success I had in that regard, it took me more than a decade to feel as if I was barely normal, but my health was still unstable, and not until more than 20 years was it reliable, but then, it was only reliable and stable if I stayed within my limited capacity for exercise, work, and life in general. whenever I exceeded those limits, which I frequently tested, I would have problems again, ranging from short term and mild, to months of unrelenting pain or fatigue.

During that time i discovered that my ailment is very common, affecting 2-5% of the population or 200 million people world wide and that the cost of paying insurance, pensions, or compensation for a lifetime is something that large organisations would not like to pay.

I have also learned that the motive of many of the people in those industries is to maximise profit and minimise costs by any legal, or illegal method that they can get away with.

I therefore decided to help the other 200 millions patient avoid being swindled out of their entitlements by searching for and finding the information they needed to succeed.

For example, there is scientific and medical proof that the condition can be reliably diagnosed, but some people are being paid to hide it form the patients, or delete it when it becomes available (e.g. see here), or it is not being “officially” accepted, and there is proof that it is chronic, but the organisations pretend it only lasts for 6 months and is likely to return to normal.

The organisations also know that the patients are often able to lead basic lives, but if they try to lead a normal life they will soon become crippled with pain or fatigue, but rather than discuss or consider that, they pay photographers to take photos of the person and use it as false evidence that the person should be able to work in the normal way.

In the process I have seen many patients get injured or ill, and claimed that it is their “right” to get compensation and other benefits and have been paid large sums of money, and now live in large houses, and drive in modern cars, without knowing that I made it possible, while I am living in poverty, and being treated like a bludger a fool, and a loser.

I have taken enormous risks with my health, in experiments to learn how to manage the problems when no-one else could, and I have never been bothered by people taking photos which might be used in court to prove I am healthy, because if I stayed home behind four walls I would be described as a mentally ill person who was afraid of the world, or I would actually go nuts from social isolation.

From an insurance perspective, people who go mad, commit suicide, or die, don’t cost them anything, whereas those who are alive and sane can.

The advantage I have is that I now understand and know how to manage my health so that the only problem is my limitations, and if I had my life to live over again, I would be able to use those methods from the start, to be much more successful in money making activities instead of having to spend much of my time studying my heath, and leaning how to control the symptoms.

The disadvantage is that representatives of the type of organisations who swindled me would still be defaming my character, and at the same time stealing my ideas so that they can claim the credit, and use them to minimise their costs, and there are 200 million patients who have benefited from my research and methods, and don’t know that I exist, or that I am the reason the are able to gain their benefits.

I was hoping that eventually, the millions of patients who I helped would support me, and thank me, given that I was only one person at the start with all the odds against me, but some of them treat me like dirt.

See also here.

The video below describes the five main 5 reasons which are used to deny patients their legal disability entitlements, and are typical of the methods which were used to swindle me thirty nine years ago, and will continue to be used against patients who wait for others to help them, instead of studying medicine and doing their own fact finding. It was provided by Tom Kindlon on Twitter 27-9-13.

Note how insurance companies pay highly qualified doctors to swindle genuinely ill patients who have never read a medical book in their lives. They have no more hope than lambs to the slaughter.

See also how the pain of sitting at a desk was real, and physical, and I was told it wasn’t, and how I eventually reduced it to a minimum by developing the stand up computer posture here. Note that I can now sit at a desk in some situations but it is my copyright which I will protect by not describing it.

Long term follow up studies

While a small number of people with the chronic fatigue syndrome may recover, and others may appear to, the fact remains that it is generally a chronic condition.

Relapses are a common feature, especially in the first few years, until the person identifies the factors which determine the symptoms and uses that information to prevent them. However, even then, they still have their physical limitations, and can only control their symptoms by staying within them.

A former name for the condition was Neurocirculatory asthenia, and a good follow up study is . . .

Wheeler E.O. (1950), Neurocirculatory Asthenia et.al. – A Twenty Year Follow-Up Study of One Hundred and Seventy-Three Patients, Journal of the American Medical Association, 25th March 1950, p.870-889 (Contributors to the study: Edwin O.Wheeler, M.D., Paul Dudley White, M.D., Eleanor W.Reed, and Mandel E.Cohen, M.D.)

A more modern study is by By Molly M Brown, David S Bell, et al. June 30, 2012 Understanding Long-Term Outcomes of Chronic Fatigue Syndrome – Journal of Clinical Psychology, June 29, 2012. See ProHealth.com • June 30, 2012 here

The following quotes come from it . . .

“Study suggests many patients once labeled ‘recovered’ from CFS are merely less disabled, underscoring the need for effective treatments, and for studies applying newly implicated biological markers / diagnostic criteria.” . . . and . . . “it appears that individuals who maintain a diagnosis of CFS for more than two decadese continue to report a high level of disability, as participants in this study scored at least one standard deviation below general population means across all MOS SF-36 subscales except for Mental Health (Jenkinson, Coulter, & Wright, 1993). Perhaps the most important findings in this study pertain to the remit group, which accounted for 80% of the 25 CFS participants. Given the duration of the follow-up, it would be expected that the remit group would demonstrate comparable functioning to a group of healthy individuals.

Yet this group had significantly more impairment than controls on 21 of the 23 outcomes evaluated” (end of quote).

The consequence of not paying pensions and other benefits

It is very clear that most people who have chronic fatigue syndrome will have it for life, and that insurance companies and governments don’t want to pay those costs, so they would prefer the suggestions of researchers such as Simon Wessely which they can use as a plausible excuse for denying entitlements. The following words are a quote from another website about his ideas . . .

“Simon Wessely was showing up at actual
DLAAB meetings as far back as 1993 being noted as giving messages
like- “As regards benefits:- it is important to avoid anything that
suggests that disability is permanent, progressive or unchanging.
Benefits can often make patients worse.” . . .

Is it any wonder therefore
why it’s so hard for ME/CFS patients to obtain disability coverage, or
why the UK Govt. is oh so fond of ‘Dr.’ Wessely?” (end of quote) See here and here.

The fact remains that patients with CFS will actually be much worse off if they are not given benefits, because the addition of “poverty” to their situation is definitely not going to help anyone except those organisations who don’t have to pay the costs.

One of the consequences of being denied benefits is undoubtedly depression, with some studies reporting that 50% of patients with chronic fatigue become depressed after five years. See my report here

Two editors try to hide the long term aspects of Chronic fatigue from the readers of Wikipedia

See how 2 Wikipedia editors try to hide the long term consequences of chronic fatigue syndrome by deleting a 20 follow up study by Edmund Wheeler in 1950 here.

“Certainly, there is no test — a fact that insurance companies in the past have used to their advantage. Even now many insurers won’t cover ME.”

Another quote from an interview with Simon Wessely about the chronic fatigue syndrome published in The Times 6th August 2011 . . .
“Theirs is a debilitating physical disease for which, some insist, there is, as yet, no cure. Certainly, there is no test — a fact that insurance companies in the past have used to their advantage. Even now many insurers won’t cover ME. Should they? “Obviously I’m of the view that we should treat these disorders equally, which is, I think, getting rid of the distinction between neurology and psychiatry.” He said this wouldpartly get rid of the distinction between the “deserving” and “undeserving” ill. See here.

See also how insurance companies maximise their profits here.

and how an anonymous Wikipedia editor creates prejudice against patients here.

See another report on the economics of this topic here.

The breathing abnormality in Da Costa’s syndrome and CFS ©

Based on my book called The Posture Theory and first published on this website on 4-6-11

There is a characteristic type of breathing in CFS that is so typical that it’s observation has been used as a means of diagnosing the ailment.

If you watch the person for awhile you will see them occasionally take a more forceful and deeper breath that ends with a sudden stop and be followed with normal breathing. There is sometimes the sound of air rushing into their mouth and a heave of their chest as they do so.

The patient will say that they felt as if they needed extra air, and that they couldn’t get as much as they wanted because it felt as if they had met some type of obstruction.

To understand that symptom it is necessary to know how normal breathing occurs. Essentially the body has two major cavities or spaces. The upper one is called the chest which contains the heart in the middle, and the lungs on each side. The lower cavity contains the stomach and liver etc.

The two spaces are separated by a large broad muscle which includes several holes such as the one which allows the food pipe to pass through to the stomach below. It is called the thoracic diaphragm and is dome shaped, and as it contracts the central part descends and drags the lungs downwards and creates a bigger space in the chest, and hence a vacuum which draws air in through the nose and down the throat to the lungs. The lungs are elastic like rubber bands, and are attached to that muscle, so when they are dragged down they are stretched. Therefore, when the muscle relaxes the lungs draw it up again. As it rises it pushes air out of the lungs, up through the throat, and out through the nose.

Hence breathing occurs because the contraction and expansion of that muscle draws air in and pushes air out of the lungs.

When the person with CFS feels as if they haven’t got enough air, they try to contract that muscle as tightly as possible. but it can only draw in a small amount extra, and won’t contract any further, which is why they sometimes feel as if they are “breathing in as if against an obstruction“, and why they say that they feel as if “they can’t get enough air”.

That individual may breath normally for an hour or two and then take such a breath, and continue to breath normally but take such breaths periodically throughout the day. The frequency depends on how much energy has been expended and how much oxygen is required to cover the requirements of such things as sitting, standing, or walking etc.

Healthy people have biological monitoring mechanisms which ensure that as the level of exercise increases the level of oxygen use increases to cover the energy needs precisely. However, in CFS, the breathing process is inefficient, and at rest there is not much difference to normal, so the symptoms only occur occasionally. Nevertheless, during exercise the abnormalities and inefficiency of breathing increases out of proportion as the level of exertion increases.

In practice that is evident by the fact that, at rest, the person may take occasional forced and deeper breaths, and when walking they may take such breaths more often. When the level of exertion is increased by jogging the person may actually have to stop after fifty yards and take two or three forced deep breaths, and then continue. Generally speaking, based on my experience, if I haven’t gained enough extra air in that process I will continue anyway and sometimes stop again in another ten yards and take another forced breath. and then proceed for another 50 yards. When jogging for a mile I may have to stop many times, usually taking from one to three breaths before continuing, and occasionally have to walk for fifty yards, and then stop, take some deep breaths, and continue jogging again.

Exercise at higher levels may in some cases be impossible because the difference between the energy being expended and the oxygen being usefully supplied is too great, and it can result in more significant gasping which is unpleasant and draining and takes excessive amounts of time to recover from.

That is why most patients will refuse to participate in exercise programs where they are required to keep on increasing their levels of exertion every week. Sooner or later they will reach their limit, and leave the course.

At rest the feature is just a forced breath, but sometimes I will need to place my hands on my hips to gain extra leverage and force the breath deeper. However. when I am jogging I will generally stop, and then bend at the hips and put my hands on my knees, straighten my back, and get even more leverage to gain the maximum depth of breath possible. It seems to be more effective in supplying the extra air I need.

The frequency of the extra breaths may also increase while talking if the amount of air exhaled in producing voice sounds is reducing the air available to the lungs.

That breathing abnormality is different to normal sighing or yawning, and different to asthma, and is different to the general concepts of hyperventilation where the person will be described as panicking and then breathing rapidly for several minutes until they become dizzy. It is not due to lack of exercise.

The CFS anomaly can and does happen any time of the day or night when the person is resting comfortably or when they are watching TV comedies, dramas, or sports. The only factor which seems to influence the symptom in my experience is the level of exercise.

To view some 3D video’s on the normal breathing process see here and here

For my YouTube video on this topic see here http://www.youtube.com/watch?v=iGts2nfGtY0

The benefit of experience

My original reseach concepts were copied by London researcher Simon Wessely from my 1982 study, and I added the essay below, probably in response to criticism from 2 Wikipedia editors, in about 2008, and it has been copied by Simon Wessely’s colleague Peter White who set up a five year study of CFS and exercise a few months later.

If you read the medical literature about patients with chronic fatigue you will get the general impression that the difficulties they have with exercise as adults are the result of not having any experience with normal exericise during childhood. The following words are extracted from a 1956 book . . . ” At school kindly doctors and soft mothers protected them from the hazards of football, swimming and the gymnasium . . . and . . . Fear of football, and fear of swimming are common in childhood.” (end of quote).

However, I played a lot of sport when I was young and was a good swimmer and a gymnastics instructor, so when I developed the chronic fatigue syndrome and read that opinion I was able to see that it was ‘plausible but not factual’. I was also able to notice and describe the differences in the response to exercise, and was invited to design and co-ordonated a research program to scientifically measure and evaluate those differences.

One of the features of good health is often described by marathon runners who will say that they were able to run the first few miles with relative ease, but would become fatigued later in the race. They typically ignored that fatigue and persevered until they got their ‘second wind’ and could continue to finish the race without any further problems.

That aspect of exercise is common knowledge and well known to runners, or anyone who has played a lot of sport, so it tends to be taken for granted as a characteristic of all types of fatigue.

However, with chronic fatigue that ‘second wind‘ generally doesn’t come, and in fact, persevering despite the fatigue can make the problem much worse. The fatigue tends to continue getting worse until the person can’t keep going any more, and then, instead of recovering within a few minutes, it may take days or weeks.

Consequently if the person does actually have an exercise related fatigue problem then it is not appropriate to give them a ‘graded’ set of exercises to do where they have to increase the level each week, every week, until they recover to normal health, because as soon as they reach their limit they will start having more problems than benefits, and will almost certainly refuse to continue.

To conclude, I can say that telling a person who is healthy to ignore their fatigue, think positively, and get through the fatigue barrier may be an appropriate and effective way of getting them to improve their fitness. However, giving that advice to someone with exercise related chronic fatigue is the worst thing that you can do, which is evident from the reports from 100 years of graded exercise programs. It is also not sensible to argue that other patients with fatigue regained their fitness, therefore eveyone should be able to, and it is not aceptable to ‘blame the victim’ for the failure of the inappropriate program design.

The individual needs to recognise that their physiological response to exercise, fatigue and perseverance is different, and they need to learn their limits and stay within them. The reduced levels of exercise can still improve the tone of the cardiovascular system and their physical fitness to whatever level is practical and possible.

It is apparent from the different responses, that each individual needs to be assessed before they start training to determine what type of fatigue they have, and what type of programme is most appropriate to their requirements.

See the programme that I designed in 1982 here

An article by Andrew R Lloyd in the Medical Journal of Australia in 2004; 180 (9) p.437-438 (which confirms the effectiveness of a fitness programme which has exactly the same principles as the program that I designed 22 years earlier) here

Some newspaper reports on the controversies about CFS exercise programs in 2011 here

The copycats who have stolen my ideas

(without having my knowledge and experience)

This section was written on 6-10-13, and is a comment on why the researchers who copied me have caused so many problems for patients

I developed my ideas and methods of treating chronic fatigue with exercise based on my personal experience and research for seven years from 1975 onwards. After a brief discussion with the head of a research institute it was obvious to him that I could solve an international research problem, so asked me to design an exercise program in 1982. He also asked me because his other researchers were busy, and he knew that I could organise such a project. Everything went according to plan precisely, but if there were any problems I could understand them, and give advice about what to do immediately.

However, since then I have suspected, and confirmed that some researchers have been stealing my ideas and copying me, and giving the false impression that it was their “new” method, I didn’t know anything with any certainty, but in December 2012 I read that a London psychiatrist called Simon Wessely had been given a prize, and soon after that a knighthood for his contributions to that area of study, and then his colleague Peter White finished a study of 650 people with chronic fatigue about an exercise program called the PACE trial.

It is virtually a copy of my methods, and yet follow up studies have found that 51% of patients have been made worse, rather than better.

The difference between copycats such as Wessely, and me, is that when patients report problems, Wessely doesn’t know why, and he doesn’t know what to do. The best thing he can do is “guess” and make mistakes at the expense of the patients health, whereas I know what the problems are, and know what to do.

They also don’t have the benefit of my 28 years of additional experience with the short term, and long term, positive and negative effects of all types of exercise under a wide variety of circumstances.

Education and Cognitive Behaviour Therapy

From pills and psychotherapy in 1975, to GET, Pacing, and CBT in 2013

Word meanings
Cognitive – related to the thinking process of the brain

Behaviour – how, what, and why a person thinks something

Therapy – treatment

The word cognitive behaviour therapy refers to process of telling a person something which will change the way they think about something in order to change or improve it. For example to stop them from worrying unnecessarily.

When I was young I had occasionally chest pains, and although it didn’t worry me, I wanted to know the cause for the common sense purpose of ensuring it wasn’t the sort of problem that needed to be treated before it caused a problem.

Therefore I would ask a doctor what was causing it. However, some doctors assumed that I was worried, when often I was just asking a question, and instead of telling what was causing the pain he would say “it is not your heart”.

Consequently I was curious to know the cause when I began studying my own health problems in 1975. I eventually came to the conclusion that it was due to my slightly stooped spine which was causing me to lean forward and put the repeated pressure on my ribs and cause inflammation and tenderness in the tissue between them which would occasionally result in a brief and sudden sharp twinging pain which would dart from the front of my chest on the left side, toward my back for about 2 or 3 cm.

I also found a book by Britain’s top researcher in the 1950’s who came to a similar conclusion, that faulty posture, or bending at an awkward angle might be the cause, and he gave the example of bending to crank a car engine.

However, he also considered that emotional factors such as anxiety might be altering the breathing of the patient, where the constant strain on the breathing muscles, which were attached to the chest wall, might be the cause.

Despite him considering both possibilities the postural cause was forgotten, and the majority of people believed that anxiety was the cause, which is probably because my doctors never told me anything about it.

When I was invited to design an exercise program for chronic fatigue patients in 1982, I also included methods of relieving any concerns that the patients might have about the pain being caused by heart disease, so I recommended that they be given a brief talk in the introduction, about the various differences between they symptoms of chronic fatigue, and those of heart disease.

For example, I recommended that patients be told what the cause of the chest pain was, not what it wasn’t.

I knew that my ideas of physical cause were not popular with some psychologists so I decided to appease any opposition they might have, so instead of discussing that as a common sense way of providing useful information, I called it “Cognitive Behaviour Therapy“.

Thirty years have gone by since then, and in the past few years I have noticed that many other people have been copying my methods, but instead of giving me the credit, they have been claiming, or being given the credit, which is ‘stealing’ my ideas.

The main treatments which existed in 1975 were ‘medication’ and ‘psychotherapy’ where the patient would be asked about worries, personal matters, and traumas of childhood etc.

The methods which I developed now dominate all modern discussions and treatment methods, and include . . .

Graded Exercise Therapy – which refers to treating the fatigue by improving fitness levels, by starting at very low levels, and gradually increasing, but within each individuals limits. (many people are not copying that method properly)

Pacing – which refers to doing things such as exercise, or the general activities in life at a rate which doesn’t wear the person out, and explaining how to do that.

Cognitive Behaviour Therapy – educating the person about the cause of their symptoms to appease any concerns they may have had about their hearts, or other health problems, and how to efficiently tone down any stress, emotions or other factors which may be having an influence on their symptoms.

You can see how I referred to such things in the guidelines I wrote for the instructor in 1982 here.

See also some of my reports about the chest pains here and here and here.

The Copy Cats

Before you read my report on the researchers who have copied me, stolen my ideas and methods, or become involved in the same research after me, see my research paper from 1982 here, and my experience with exercise before and after I developed chronic fatigue here. Many of their findings are the exact equivalent of scientific PEER REVIEWED CONFIRMATION OF MINE.

When I developed my methods of treating the symptoms I knew with certainty that they were not not just relieving them effectively, but were actually changing the situation form one in which they were getting worse to getting better, and I also knew that mine were far better than any methods from the past. I also knew that in the future other researchers would have to copy me or fail.

However, I couldn’t be certain that they would accept those ideas, or admit that they were mine. I just kept developing those methods, and refining them to deal with various health problems as it became necessary, and publishing how I did i to help with the general understanding of the ailment.

However, it has recently become obvious to me that literally thousands of top researchers have been copying me, or getting their ideas from those who have.

This is a quote from a research paper by Leonard A. Jason et al called “Non-pharmacologic Interventions for CFS – A Randomized Trial, published in the Journal of Clinical Psychology in Medical Settings, 14, 275-296. See here.

Before you read the quote I would like you to notice that they are not “medications invented by doctors’, and not ‘psychotherapy invented by psychologists’.

They are practical physical methods for treating a physical problem that were invented by me, and copied, reworded, or stolen from me and attributed to other authors.

The following quotes from that article are typical . . .

The purpose was to evaluate “nurse delivered non-pharmacological interventions . . . in the present study , 114 participants diagnoses with CFS were randomly assigned to four 6 month interventions“

“This treatment was featured in an influential review article (Whiting et al., 2001) . . . Using this approach, patients with CFS are encouraged to engage in gradual and consistent increases in activity and to attempt active strategies in place of activity avoidance as methods to manage symptoms (Surrawy, Hackmann, Hawton and Sharpe, 1995)”.

“Two randomized controlled trials of CBT (Deale, Chalder, Marks and Wessely, 1997; Sharpe et al., 1996) reported substantial improvements in physical and role functioning for the majority of treated participants with CFS”.

“Other non-pharmacological intervention studies have emphasized the role of aerobic exercise in the primary intervention. For example, Fulcher and White (1997) compared graded aerobic exercise to flexibility/relaxation training and found that patients with CFS in the exercise group were more likely to rate themselves as “improved” when compared to those in the in the flexibility/relaxation group (52% versus 27%)”.

“The CBT treatment was developed in Collaboration with Vincent Deary, who has worked for many years with the team a successful controlled clinical trial of CBT in CFS (Deale et al, 1997). This treatment was collaborative, educative, and negotiated with participants based on a comprehensive cognitive behavioural emphasis, Specifically, participants were asked to evaluate the effect of gradual and consistent increases in activity and utilize strategies other than avoidance. The aim was to show participants that activity levels could be increased steadily and safely without exacerbating symptoms.” (end of quote from page 280).

I have to emphasise that I am not accusing those researchers of stealing my ideas, but I can say with certainty, that I was the patient who invented those ideas in 1976 to treat my own ailment, and that I scientifically proved that other patients could benefit from the same methods in 1982.

Those researchers owe me a debt of gratitude for my ideas, and are doing a lot, such as providing a peer reviewed verification of my discoveries, but what they are definitely not doing is being the first.

They also need to acknowledge that the methods were developed by a patient, and not a doctor, and not a psychologist, and that the person was me.

I can also say with absolute certainty that after 38 years of practical experience that I know a lot more than those teams of experts, and that they are having some problems because they are doing things in slightly different ways.

Correcting “inappropriate illness beliefs”???

from “run faster and faster” to “exercise within limits”

Modern research papers about CFS refer to the process of correcting inappropriate “illness beliefs” as if it is just the patients problem, when in fact, when I began studying medicine in 1975, I found that doctors and psychiatrists had many mistaken beliefs about the nature of my illness, so I wrote essays to assist them to understand it better, and develop more effective methods of treating other patients.

For example, when ever patients asked what was causing their chest pains the doctor would say it was not their hearts, which would leave them in a state of doubt which can cause worry where it didn’t exist.

I found that the chest pain was caused by inflammation of the ribs on the lower left side, so I recommended that, in order to remove any anxiety they should “tell the patients what the cause is, not what it isn’t”, and some of them will stop worrying.

To put it another way I said ‘give them the facts to change their wrong beliefs about the cause of the pain.

For example the majority of doctors believed that the symptoms were mental and “not physical”, and were, “trivial” or “imaginary” of “all in the mind”, so they would tell the patients to ignore their symptoms and do whatever they wanted, and wouldn’t get any problems.

In particular, they told their patients that the symptoms they experienced during exercise were normal and that they should just ignore them and run faster and faster until they regained normal fitness and health.

Since I wrote my essays and books the treatment of CFS has changed entirely, and is now virtually the exact opposite than it was before.

Doctors are now educating their patients about their illness in a process called “Cognitive Behaviour Therapy” where their objective is to correct any inappropriate illness beliefs, and they are telling the patients they need to exercise within their limits, and improve gradually in a manner that doesn’t cause problems, and to slow down if it does.

Unfortunately for one reason or another, nobody wants to admit that I brought about those major changes.

In fact, Simon Wessely, a psychiatrist, has copied my ideas, and been given the credit, to create the illusions that psychiatrists brought about those changes. It saves them having to publicly admit to the embarassng fact that they were proven wrong by a patient. See more here, and here, and here, and here, and a section on my publications page near the end here..

See also my report on the somatororm diagnosis, which is offensive and ridiculous, and mostly victim blaming nonsense here.

Quotes about inappropriate illness beliefs in CFS

from a link provided by Tom Kindlon on Twitter 30-9-13 to criticisms from the editors of Phoenix rising website

See a modern report where the researchers still believe, and treat the chronic fatigue syndrome as if it is due to lack of exercise and inappropriated beliefs about illness and the effect exercise has on them here

This is some quotes from that article . . .

“I have a funny story about this clinic and recovery. I have heard that as part of the programme people who had previously been on the programme, who were now said to be recovered (by those running the programme), were brought in to meet with patients who were currently the programme. But after talking to them, the patients currently doing the programme realised that these “recovered” patients, were not in fact recovered at all!!

“Results: Poor outcome was predicted by membership of a self-help group, being in receipt of sickness benefit at the start of treatment, and dysphoria as measured by the Hospital Anxiety and Depression scale. Severity of symptoms and duration of illness were not predictors of response.” (end of quote)

“Conclusions: Poor outcome in the psychological treatment of chronic fatigue syndrome is predicted by variables that indicate resistance to accepting the therapeutic rationale, poor motivation to treatment adherence or secondary gains from illness.”

Predictors of response to treatment for chronic fatigue syndrome RICHARD P. BENTALL, PhD, University of Manchester ; PAULINE POWELL, PhD and FRED J. NYE, FRCP, Royal Liverpool Broadgreen Trust ; RICHARD H. T. EDWARDS, FRCP (retired).
The British Journal of Psychiatry (2002), 181: 248-252
http://bjp.rcpsych.org/cgi/content/full/181/3/248 (end of quote)

“Their use of this phrase reminded me of this : “misinterpretation of associated bodily sensations” (from, Richard Mayou, and Michael Sharpe, Treating medically unexplained physical symptoms Effective interventions are available BMJ 1997;315:561-562) (end of quote)

“Results: Poor outcome was predicted by membership of a self-help group, being in receipt of sickness benefit at the start of treatment, and dysphoria as measured by the Hospital Anxiety and Depression scale. Severity of symptoms and duration of illness were not predictors of response.” (end of quote)

“I’ve met someone who had recovered via GET and CBT, and it was strange speaking to them. They’d say how totally recovered they were, but that a vital part of their recovery was realising that they were not able to do a lot of the things they used to be able to. They now saw their illness as a good thing, having helped them learn to not do too much, where as those who had not been ill would foolishly do much more.
I was rather confused by it all, but didn’t want to push them on it as they seemed a bit fragile. So am I.” (end of quote)

The full article and discussion can be seen here

Quotes from modern research

Another quote from a link provided by Tom Kindlon on Twitter 30-9-13

“Advice to patients from CO-CURE Archives CO-CURE@LISTSERV.NODAK.EDU

NOT: Liverpool CFS Clinic handouts Date: Sun, 29 Sep 2013 07:42:26 -0500″

“the following booklet is part of the Pauline Powell/Liverpool
CFS Clinic oeuvre, which formed the basis of the FINE trial. In it are
yet more examples of ME/CFS patients being explicitly told that a)
there is no organic disease whatsoever occurring in ME/CFS patients,
b) if patients follow the exercises suggested in the handbook/pamphlet
that ‘the symptoms of CFS will gradually disappear’, and c) that
ME/CFS patients’ symptoms following exercise should be ‘mopped up by a
10-15 minute rest afterwards’.

The booklet is uploaded here-
http://www.mediafire.com/?1m6i02ikqxrg78m

p.12 -“As there is no disease it is safe to gradually increase exercise and
activity. But because your cardiovascular system and muscles are
severely deconditioned, and body rhythms are out of synch, graded
exercise is very difficult at first and progress does seem slow.
However, if you persevere with your exercises in a controlled (timed),
gradually increasing way and check your sleep habits, you will build
up your physical stamina and develop a regular sleep pattern. It is
advisable to wear training shoes for exercises.

The symptoms of CFS will gradually disappear.” (end of quote here)

My comment: Many of those recommendations have been directly, or perhaps indirectly copied from my research project of 1982 and essays since. i.e. the author may have read them in the general literature, but they originated with me. However, there are a number of problems that I can see with their version, but since other people are being given the credit for what are essentially my ideas and conclusions, it is simply not worth my while correcting the mistakes

Heated arguments

Throughout more than 100 years of history there has been constant controversy and heated arguments, and even spite, hatred and death threats against people who have different opinions.

The main ones have been whether it is imaginary or real, physical or mental, ordinary tiredness of abnormal tiredness, and whether it is caused by a virus or chemical toxicity, or the adrenal, nervous, or immune system, and since I proved it was physical and involved exercise limitations the arguments centre on whether exercise is good for the patients or doing them more harm than it’s worth.

I set out to solve many of those problems with some success, but now there appear to be people who want to act as if I don’t exist, and copy my ideas and methods to gain the credit for themselves, and they ridicule me and defame my character, and act as if they hate me with a vengeance for accusing them of stealing my ideas, or even for just mentioning that I developed the methods before them, and that they should acknowledge that fact.

Ever since I started I realised that I might not succeed, but what I could do was to describe what happened, and that is what I continue to do.

In the meantime, I have made a lot of advances in the knowledge of the ailment, and developed some very effective methods of treating it, and had a major influence on the course of research.

I wasn’t really aware of how many people were using my ideas and methods until about a year ago, when I saw that Simon Wessely had been given the John Maddox Prize for his contributions to the study of CFS, where he was described as developing “new” methods in from 1987 onwards, and since then I have seen several people claiming that they have had “new” ideas, or developed “new” methods or “new” understandings etc, which they started recently, or ten years ago. or 20 years ago.

There is not much difference between those supposedly “new” ideas and mine, which I developed between 1975 and 1982, more than 30 years ago. However they took me many years of evaluation, and the depth of my knowledge makes a lot of difference.

The Most Common, Complicated, and Confusing Illness in Medical History, including economic and political aspects

The chronic fatigue syndrome is the most common illness in medical history and has been particularly common in the Western World since the seventeenth century when it was recognised as being a disorder of sedentary workers that was rare in farm laborers and non-existent in primitive tribes people.

Nowadays it is commonly encountered amongst patients in every medical clinic and is well known and recognised by all doctors, but there is no generally accepted blood test or x-ray evidence of the cause, and no officially endorsed reliable way of diagnosing the condition, and no consistently effective treatment, and no known cure.

The condition is so complicated and confusing that there are more than 100 diffferent labels for it which vary from one doctor or specialist to another, and from year to year, decade to decade, and century to century, and has often been used as the subject of classroom debates for first year medical students, and sometimes produces heated arguments at medical conferences.

Chronic fatigue was the most common ailment in the nineteenth century when it was called Neurasthenia due to the belief that it was caused by a weakness of the nervous system. That label was the most commonly used diagnosis in medical clinics where the condition came to be regarded as an imaginary, trivial, or psychological disorder. Some researchers thought it was caused by tight corsets which compressed the chest, heart, and lungs. It was therefore known as a women’s ailment but it also affected some men, especially those who wore male corsets, which were common at the time.

During the American Civil War a physician named J.M.DaCost observed the extreme faintness and fatigue in soldiers who had marched into battle with heavy fully laden knapsacks at double quick pace for 16 hours at a time in cold wet conditions, while suffering from an infection. He also noted that the symptoms were ‘undoubtedly’ aggravated by their tight waistbelts, and, as the result of his studies the condition became widely known as Da Costa’s syndrome.

In the early twentieth century when time and motion studies were introduced to improve productivity in coal mines, the condition became common amongst men who were required to increase the tonnage of coal that they shoveled each day to achieve the new and gradually increasing average worker requirements. The illness was then called Industrial Fatigue. However, there was no medical test to confirm the existence of the ailment and that created two problems. Firstly the number of individuals developing the ailment was posing a great cost to industry, and secondly, healthy workers could start faking the condition to avoid their occupational responsibilities, so industrialists socially engineered the idea that it was a psychological disorder, and in Britain the name of The Industrial Fatigue Board was changed to The Industrial Psychology Board. Thereafter healthy workers refrained from faking the condition to avoid being branded as mental cases, and genuinely fatigued patients had to endure the shame and psychological distress imposed on them by the fraudulent defamation of their characters.

In World War 1 the condition affected soldiers who were exposed to round the clock cannon fire in the trenches of the Western Front, where the constant noise made it difficult for them to sleep for months at a time. It also affected soldiers who were exposed to the shockwaves from exploding bombs, but were not hit by shrapnel, so it became known as Shell shock. The undetectable nature of the fatigue again posed several problems for army administrators. Firstly, the large number of cases was reducing the manpower available to do the fighting. Secondly, large numbers of healthy soldiers could start faking the condition to avoid the risk of death on the front line, and the combined loss of manpower could make it difficult to win the war. Thirdly, the cost of military pensions was making it uneconomic to continue the war. The armies therefore started discrediting the idea that the condition was a real physical ailment and reinforced the psychological theories by attributing it to fear, with emphasis on the label of cowardice. Thereafter healthy soldiers would choose to face death in battle rather than fake the fatigue and be branded as cowards, and the genuinely fatigued patients had to endure the shame of the devious defamation. The army chose to conveniently overlook the fact that some soldiers were being granted bravery awards at their bedside while they were being treated in shell shock hospitals. The awards were given to soldiers who demonstrated courage in battle above and beyond the call of duty.

During the Iraqi War the U.S. planes were reported as carrying bombs which were specifically designed to produce the type of shock waves that were most effective in causing the symptoms of shell shock, and many enemy soldiers were reported as being too exhausted to pull the triggers of their guns and were easily captured.

In civilian life some scientists observed that most patients with chronic fatigue spoke of intolerably distressing cardiac symptoms during physical exertion so the ailment was called “The Effort Syndrome”. Others noted the similarity to the normal symptoms of fear and exertion, and therefore concluded that the symptoms may have been due more to the fear of exercise, rather than the exertion itself. However, many of the patients had thin physiques so there was the suggestion that it was due to poor physical fitness resulting from a lack of exercise (some researchers call that ‘deconditioning’ i.e. gradually becoming less and less fit due to the lack of exercise). There were also suggestions that it was due to the fear of competitive sport, or laziness. When the condition affected factory workers who were accidentally electrocuted at work it was called Industrial Shell shock.

Follow up studies from World War 1 showed that the condition was more common amongst lightly built sedentary workers who were sent off to war without the proper amount of physical training, and they were expected to keep up with the marching pace of solidly built soldiers recruited from farm laboring communities. Consequently, by the start of the second World War, volunteers with such physiques were rejected on medical grounds. However, even the fittest of recruits could develop the fatigue if the conditions of war were severe enough. Their condition was called Battle Fatigue. Prisoners of War who lost more than one third of their body weight due to starvation developed chronic fatigue and many of them were still troubled by abnormal fatigue thirty years later.

Some psychiatrists continued to believe, or promote the idea that the absence of blood test or x-ray evidence of disease was an indication that there was nothing physically wrong with the patients, so they diagnosed the condition as Anxiety State, and other psychiatrists noted that many of the patients with chronic fatigue were depressed so they called it a Depressive Disorder, but most doctors reported that there were patients in almost every clinic who had the condition but appeared to be as anxiety free and as well adjusted as any of their other patients. When the condition affected a soldier at war some psychiatrists continued to attribute it to the fear of battle and called it Battle or War Neurosis, and if it affected a person at work they attributed it to laziness or psychological stress so they called it an Occupational Neurosis, and if the person claimed workers compensation for the ailment they believed that the motive was subconscious greed so they called it Compensation Neurosis, and they believed that after the workers left their employment or received a large financial payout from an insurance company they would make a rapid recovery. Those psychiatrists did not do proper follow up studies, because they were not aware that many patients were forced to resign without the benefit of workers compensation or other entitlements and spent the remainder of their lives in poverty.

Furthermore, by not informing workers of the consequences of continuing to work while in a state of fatigue they were neglecting their responsibility to provide preventive advice, and contributing to the development of the chronic condition, and hence were contributing to economic costs to the patients and society.

(It has been a feature of medical history that obscure illnesses have been prejudically attributed to negative, rather than positive personality traits, such as evilness, sinfulness, laziness, cowardice, or greed.)

After more than 100 years of the condition being popularly attributed to laziness or a fear of exercise, it became widely known to affect Olympic athletes, Sports Champions, Football stars, Marathon runners, and World Record holders. The new profession of sports physicians attributed it to excessive physical strain without adequate rest breaks, and began calling it the Overtraining Syndrome. For example, if poorly prepared athletes participated in too many marathons in the one year they were likely to develop chronic fatigue. They didn’t have sufficient time between marathons to fully recover, so when running each additional marathon they just compounded the fatigue which permanently impaired their fitness capacity until they could no longer compete at the elite level, and in the worst cases could not continue with normal employment or lead normal lives. (i.e. it was caused by overwork amongst athletes who were enthusiastic about exercise). The sports doctors recognised its chronic nature and the fact that it could ruin the careers of professional athletes, so they began recommending graduated and regulated physical training programmes as important methods of preventing and treating the problem.

Some observers have noted that overwork can cause chronic fatigue so it could be called the Overwork Syndrome which affected workers who worked too hard for too long without adequate rest breaks. The workers who became fatigued and took rest breaks recovered but those who ignored the symptom of fatigue and kept working became over-exhausted and stayed exhausted.

The condition is also common in pregnancy and in other cases it persists or starts after childbirth when the post-natal fatigue has been called Post-Natal Depression, due to the belief that it is the result of the psychological stresses of motherhood. Some women with chronic fatigue can trace their first experience of fatigue back to a pregnancy which may have occurred twenty years earlier, and that prior to the pregnancy they were fit and healthy and had a lot of energy and played a lot of sport.

Other patients report that they can trace the condition back to a traumatic experience in their past, such as the death of a spouse, or the break up of a relationship.

Throughout history there are many examples of epidemics of chronic fatigue of unknown cause which have occurred amongst localised communities such as an outbreak in Akureyri in Iceland in 1948. The symptoms included headaches, sore throat, muscle pain, spasms, paralysis, tiredness, and emotional instability. This set of symptoms was called Icelandic Disease to identify it’s locality, with a medical diagnosis of Myalgic Encephalomyelitis, and it was thought to be due to a contagious viral infection. In some cases the fatigue persisted for weeks or months or even years afterwards, and the duration was related to the extent of the paralysis during the original phase. It has been proposed that the persistence of fatigue was due to a post-viral condition where the virus became dormant or hidden and produced long term strain on the immune system. In 1955 there was an outbreak of the ailment affecting 300 of the male and female staff of the Royal Free Group of hospitals in Great Britain where it became known as The Royal Free Disease. Also, after a flu epidemic in Tapanui, New Zealand, many patients were left with persistent fatigue which became known as The Tapanui Flu.

In World War 1 60,000 British soldiers returned from the trenches of the Western Front where they were exposed to the cold and wet, poor nutrition, blood, pus, rotting corpses, bed lice, contaminated food, food poisoning, dysentery, and wound infections, and the war was finally brought to an end by the Spanish flu which killed millions of soldiers and civilians and was the most severe influenza epidemic in history. After recovering in hospital from months of dysentery and flu the fatigue persisted and many veterans continued to suffer from fatigue for the remainder of their lives.

There are also many cases where patients who have had chronic fatigue for many years, can trace the onset of their condition back to a viral infection of some sort, such as Glandular Fever. Prior to that infection they were fit and healthy and lead normal lives, and since then their lifestyle has been restricted by the fatigue.

Other patients report that they can trace the start of the fatigue back to a period of exposure to farm insecticides, or factory chemicals.

Some patients report that is has been a problem since they were born because they cannot remember a time in their lives when they were not easily fatigued, and others cannot recall any particular starting point or incident, and some say that the condition seemed to start incidiously for no identifiable reason and that it gradually got worse until it affected their sport, and then their social life, and ultimately their employment.

There is evidence of a disorder of blood flow throughout the body so North American medical researchers called it Neurocirculatory Asthenia, and Russian researchers called it Vasoregulatory Asthenia based on the idea that it is due to a disorder that affects the regulation of blood flow.

Apart from the fact that the actual physical or organic cause of this ailment has not yet been found, the other reason for the condition being confusing is that there are probably several different disorders being diagnosed as one. For example, some of the conditions may be sleep disorders (related to tiredness) and some may be exercise disorders (related to physical fatigue), and others may be a combination of sleep and exercise disorder. There may also be several different causes for each type which have the same ultimate affect on the body.

In the nineteenth century the condition was commonly seen in women who wore tight waisted corsets which compressed the chest, heart, and lungs and impaired blood circulation from the feet to the chest and brain.

According to The Posture Theory, poor posture compresses the chest and abdomen, and sedentary work involves repeated or constant leaning toward a desk, and when both of those factors are combined the heart, lungs, and abdomen are being repeatedly compressed, and if that process is continued for many years it can eventually and permanently affect the the blood flow from the feet to the chest and brain, and the regulation of physical responses to exertion, and sleep patterns, which is characteristic of The Chronic Fatigue Syndrome.

Multiple factors need to be considered when assessing the cause, and the type of CFS. M.B.

The possibility of many causes

Some people have argued that coronary heart disease is due to genetics, cholesterol, smoking, alcohol, stress, or worry, and or combinations of those factors. All of those suggestions may be correct.

Some people have argued that the chronic fatigue syndrome is due to genetics, excessive and prolonged exertion, overwork, viral infections, disorders of the immune system, or the autonomic nervous system, exposure to toxic chemicals, postural problems, stress, or worry. Probably all of those factors are correct.

Unfortunately, people who favor one idea, generally try to argue that everything else is wrong, regardless of the fact that they can’t prove their own idea, or prove that the others are wrong.

Overwork or laziness as the cause of CFS?
and “Conflict of Interest” in research results

The most logical cause of the chronic fatigue syndrome is that the person works too hard, beyond the limits of human endurance, and hence fails to recover, and remains chronically fatigued. For example, they may work long hours for many years, or go on long marches with heavy knapsacks for weeks at a time while poorly fed and suffering from infections, or they may participate in too many marathons without sufficient rest in between.

However, research into cause is funded by people who have money, such as large companies, and they want ideas aimed at keeping their workers healthy and productive. If they can’t get that result they want ideas which enable them to save the costs of illness, such as compensation and pensions.

Therefore they tend to favor the ideas which blame the patient for the problem and make them appear as if they don’t deserve compensation etc.

Hence the ideas that get the most publicity are those which argue that the patient isn’t actually ill, or that the evidence of real illness doesn’t exist, or if it does, they deny it, or hide it, or argue that it isn’t good enough. There are also arguments that the patient is imagining things or that the symptoms are trivial, or that the person is just complaining to get sympathy, or that their fatigue is due to laziness and the lack of exercise, and that they don’t deserve compensation or insurance payouts etc, and that all they have to do is think positive and exercise regularly and their symptoms will disappear.

It has even been argued that as soon as the patient gets compensation their illness miraculously disappears. However, long term studies show that the condition remains chronic regardless of whether they get insurance payouts or not.

The fact remains, that it is much more logical to suggest that overwork is the cause, or at least one of the causes, and that laziness and lack of exercise is not. For example the world is full of people who are proud of the fact that they never exercise, and the ‘couch potatoes‘ who watch TV all day, but despite the complete and utter lack of exercise they are still in perfect health.

The idea that the symptoms are due to laziness, or mental weakness, or poor character etc, is an advantage to large companies because it creates prejudice against the patients, and leaves the public impression that they don’t deserve compensation etc, and acts as a sort of justification for not paying the same entitlements which apply to other illnesses.

Of course patient groups do try to raise money to fund research projects, but in their state of ill-health they have difficulty raising the funds, and can’t compete with the financial clout of the large companies.

Hence while the majority of patients will tell you that their symptoms are abnormal and physical, and while there is a massive amount of scientific evidence to support that view, the prevailing opinion of laziness or mental cause reflects the influence of the large companies and organisations who have the most money available to fund the research.

Patients need to understand such influences on the ideas about their illness and not just passively complain about how unfair it it. They need to do something in an organised way themselves.

(Nobody would argue that cancer is caused by laziness so it is somewhat curious that anyone would believe that the chronic fatigue syndrome is caused by laziness).

Financial incentives in research opinions

If a large organisation such as the tobacco industry offers financial assistance to scientists to do research into the health problems caused by smoking it is likely that most respectable scientists wouldn’t accept the money because the cause and effect relationship is obvious. However some incompetent academics would see it as an opportunity to make money the easy way. They would know that if they found proof that smoking was the cause of cancer the information would be covered up, and their funding would be stopped. They also know that if they could construct a study to show that it was not the cause the funding would be likely to be renewed each and every year in the future. They also know that they would be likely to get increases in funding and promotions to put them in charge of other staff to ensure that those who found the same results would be retained and promoted, and those who found proof of cause would be demoted to a position of insignificance or sacked.

Hence if anyone found proof of the cause and effect they would be described as fringy kooks who were foolishly challenging the official opinion of internationally renowned and prestigious researchers.

The same general paradigm affects any organisation where the illness presents financial or other liabilities and costs, including the chronic fatigue syndrome.

See also here and here and the costs of CFS here.

Some Extreme Medical Attitudes about so called laziness, and irresonsibility in CFS

On 15th November 2013, Tom Kindlon posted a tweet about another letter tweeted by richardcann76 here, which was about patients with the chronic fatigue syndrome. Richardcann76 presents some valid complaints about the professional misconduct of a doctor called Dr.X who has been saying some very derogatory and insulting things about CFS patients.

For example, he says this about Dr.X. . . “A search of his past BMJ posts suggests that he has a pretty low opinion of his patients, particularly those with long term, chronic illness on state benefits, who he suggests would be better off “with a report from their social worker for their assessment of their ability to work. . . . and . . . “because it gives me (Dr.X) the opportunity to start a discussion on how they can improve their lives through work rather than wallow in worklessness . . . and he considers that the patients just have . . . “a mixture of mild organic problems, moderate emotional difficulties and severe social disincentives (to work).

The attitude of Dr.X is that the patients are just complaining about illness to get secondary gains such as ” attention” or, “financial” benefits, “or simply to find an excuse to wallow in worklessness or avoid life’s responsibilities”.

My comment . . .

Any person who researches the ailment properly will find thousands of research papers about physical and physiological abnormalities which explain the symptoms, and can see follow up studies which show that it has long term consequences.

In other words, any patient or doctor or medical authority who studies this ailment will know that Dr.X is not just an ignorant fool, but is a liar who should be permanently banned from any profession which treats patients, and put in jail.

The letter by richardcann76 can be seen again here.

My final remark is that Dr.X is also incompetent in his understanding of CFS and would be completely and utterly useless at treating it and would cause his patients a lot more harm than good.

Eliminating criticism of Diagnostic Criteria for CFS

One of the problems in research is getting specific results which are confused with other factors, where some people have falsely argued that the symptoms could simply be due to a lack of exercise, or depression etc.

Hence, if I was to do a fitness study again, I would ensure that the selection criteria eliminated that confusion in the following manner.

1. The patients should have a type of fatigue which restricts their capacity for strenuous exertion and involves measurable abnormal physiology which is evident as the level of exercise increases, or afterwards.

2. The individuals should report that they have to occasionally take forced deep breaths where they often feel as if they cannot get as deep a breath as they need, and hence may take a series of two or three forced breaths. This is due to inefficient respiratory function, and is more likely to occur with greater frequency during exertion.

3.The individual should have a history of being physically fit and involved in strenuous sport in the years prior to developing CFS.

4. The individual should not show any signs of sadness, gloominess, or despondency, or any other psychological evidence of depressed mood. The history of research clearly shows that such individuals do exist and are not particularly difficult to find.

Once the data of the fatigue has been clearly determined, then it can be reassessed in relation to mixed groups later.

What not to do – Don’t mix the study with people who have never exercised or played sport in their life, or individuals who look and act miserable and despondent, or you will get mixed results, and your critics will argue that they are all just unfit due to a lack of exercise, or are all depressed, and that your results and conclusions mean nothing.

Chronic fatigue syndrome and Varicose veins

. . . and why my critics are so hostile and want to hide my existence and my ideas

re: varicose veins in the legs cause slight faintness, chronic fatigue involves more faintness – and the reason why

When I began studying medicine I had so many symptoms that I was told that the only possible cause was a disorder of the mind because it was housed in the brain and attached to every part of the body by the nervous system. I was further told that no other factor connected all parts of the body together and that no other cause was possible.

However I soon established that poor posture, and leaning forward could compress the stomach to cause stomach pain, and compressed, and compressed the ribs to cause chest pains, and the lungs to cause breathing problems.

I also knew that leaning forward had induced a sense of faintness which had been relieved by sitting upright, and suspected that poor posture could also be the cause of fatigue but I didn’t know how, and started looking for other factors.

Four years later, when I found out about Valsalva’s maneuver I was soon able to determine how poor posture could compress the air in the chest, and hence the blood vessels in the chest, to slow the flow of blood between the feet and the brain produce a tendency to faintness and fatigue (poor concentration and tiredness), and well as a reduced capacity for exercise.

I therefore had to determine why the tendency to faintness and fatigue had become chronic and related to many factors other than poor posture.

I therefore came to the conclusion that compressing the air in the chest repeatedly hundreds, if not thousands of time per day while doing sedentary work, could have strained or stretched all of the blood vessels below the chest, or made them weaker, so that they tended to stretch more easily than usual. Hence they were either larger in size, and had a greater capacity for blood than normal, or were prone to stretching which would give them that greater capacity.

Hence, in such circumstances, the blood coming down from the heart would take longer to fill them, and there would be a slight delay in its return to the brain.

That delay, or the weakness or inefficiency of blood flow to the brain would explain the chronic nature of fatigue.
I then decided to help people understand my theory by providing example of which part of the vascular system had been weakened.

It could damage to the muscles or nerves in the walls of the arteries, or the veins, or the fine capillaries between them, or it could be due to damage to the neurological reflex centres which co-ordinate, and try to normalise blood flow.

The example which I chose to use as on of countless possibilities was damage to the large abdominal vein called the inferior vena cava which brings blood from the two leg veins to the heart.

Many years, or decades later I was looking into the topic of Varicose veins, which are generally leg veins which have become stretched and enlarged by such things as leg garters which blocked the upward flow of blood and caused the one way valve below to give way and the veins to dilate and widen in a manner that is lumpy and curved and twisted.

The quantity of blood which those dilated veins contain is much larger than normal. I then saw a comment that they take longer to fill than normal blood vessels so that some people with varicose veins feel a slight sense of faintness when standing up suddenly.

I also found that another name for the Chronic fatigue syndrome, is Orthostatic intolerance and that there is evidence that the symptom of faintness is related to a scientifically measurable delay in the return of blood flow to the brain.

I therefore, of course, concluded that people with varicose veins have slight problems with faintness because their veins are slightly larger than normal, and that chronic fatigue patients have more obvious problems with faintness because a much larger area of their blood vessel or vascular system is affected.

If you follow what I have just explained than you will know that it is a very logical, sensible, and evidence based concept which is perfectly reasonable, and at least as good, if not better than any other theory that has been written on the subject.

However, while i have actually solved the problems of many patients by presenting a very credible explanation of a physical cause of symptoms, I have unfortunately created discontent and offense to some of those who have been arguing in the past that they symptoms are “all in the mind”.

When the general public see the criticism of me and my ideas they are having their attention focused on the supposed faults in my personality, or my ideas, to divert attention away from the motives of my critics who don’t want people to think that their ideas may be wrong.

One such individual was an anonymous editor of Wikipedia, who was not just criticising me in a “proper” or “normal” manner, as required by the rules, but was insulting, belittling, ridiculing, and mocking me in a hostile and offensive manner, and nitpicking almost every word I wrote for 12 months, and deleting it, and the evidence at every opportunity, and did not stop until I was banned.

An example of absolutely ridiculous nitpicking by that editor can be seen here.

An example of that editor co-operating with another to discredit me can be seen here.

An example of the words used to get me banned are quoted below . . .

“I think that a broad topic ban (including Da Costa’s syndrome, Chronic fatigue syndrome, Varicose veins, and any articles even slightly related to human posture, fitness, or fatigue) is an appropriate outcome. WhatamIdoing 20:25, 27 January 2009 See here, and two of my reports here and here.

More of my reports on varicose veins can be seen here and here.

My reports on Valsalva’s maneuver and faintness (due to pressure on the air in the chest) here and here and independent evidence for that pressure here.

More than one factor connecting every part of the human body

I also determined how poor posture could strain the spine to cause neck and back aches, and alter the angles of most skeletal and internal structures to cause such things as kidney aches, sore throats, and jaw pains etc

I had therefore proven that there were at least two possible factors connecting every part of the body together, with the skeletal system being the other one, and that therefore there were probably many possibilities which had, or had not previously been considered.

My critics are offended, spiteful, vindictive, and hostile because I have proven that their claim of only one possible cause is wrong, and I have proven a physical cause, to replace the old ideas of psychological cause.

I expect them to continue in that manner, and they will “possibly” be successful “socially”, but not “ethically”, or “intellectually”.

My response to the letter of Dr. Dairymple’s

In 1975 I had many health problems which were not responding to any form of medical treatment, so I decided to study the matter myself.

To describe that task as difficult would be an extreme understatement. See why I started here.

Firstly I spent most of my time laying on the lounge room carpet, because that was the only position I felt reasonably free of pain or fatigue, and I could think for many hours without problems. However, when I sat up and leaned forward to read or write I would have to deal with a lot of abdominal pain, so I would learn the medical language at the rate of one word per day, and write small sentences at a time.

I joined an exercise class and was always running last in a class of 50 or more, but that didn’t stop me.

When I wrote essays there were some people who would argue that if I could do that, I wasn’t in pain, and I should be able to get a job, but there were others who criticised my obviously “different” style of writing in “sentences” and paragraphs” instead of “paragraphs” at a time, instead of pages and chapters etc.

It took me four years to determine why I was always relapsing into fatigue, and it hasn’t happened since I learned how to control it. It took me five years to write my theory connecting all symptoms to my spinal shape, posture, and physique, and it was at least ten years before I felt even remotely healthy. It then took me another eight years to determine how to prevent the abdominal pain.

During that time I also had one period of six months of angina heart disease which I treated with a vegetarian diet, and six years of Non-Hodgkin’s Lymphoma, CHOP and DHAP chemotherapy and a stem cell transplant, and four years of side effects.

The older I get the more detailed my understanding of disease becomes, and the better I get at managing highly complex health problems and their interactions, so I actually now have reasonable health, although with many limitations.

When I joined Wikipedia one of their anonymous pathological liars made the snide remark that ‘given the amount of writing I have done, for me it is not a trivial thing”.

The fact is that most people with chronic fatigue can’t do much, and those who do, against considerable difficulty, are treated with contempt.

Another example of that ridiculous and offensive attitude is that of an anonymous doctor who gives the fictitious ID of Dr. Dairymple can be seen below.

The only words in her rant are the admission that her own opinion is “admittedly rather ill-informed”.

She also says that, in her opinion, “the unwillingness of the medical profession to speak plainly on this matter is a sign of pusillanimity, not of obduracy.”

I will therefore speak plainly about Dr. Dairymple . . .

You show extremely bad judgmenta by giving such strong opinions about something that you admit to being “ill-informed” about.

You are a useless and worthless menace to patients and should be permanently banned from the medical profession and never again allowed to make money by treating them.

Note: Dr. Dairymple refers to the fact that her patients had consulted many doctors in the past to get help. She was the 46th.

I probably consulted more than a dozen doctors over a period of five years, and was sent to many x-rays and blood tests, and prescribed countless numbers of pills, potiens, and capsules, before deciding that I would have to take on the responsibility of solving the problems myself.

Dr. Dairymple’s Letter

“A short time ago, I published an article about myalgic encephalomyeltis. I broke no new scientific ground: I merely suggested that the condition was akin to neurasthenia or old, and – unlike real diseases – was more common among the semi intellectual middle classes.

To my surprise, I received scores of letters from sufferers: despite the fatigue which has prevented them from going to work, washing up, shopping and so on, they managed to write several pages of impassioned prose.

I went to a symposium on the illness (if that is what it is) last week. As the participants gathered just before it began, I heard anxiously whispered questions among them as they tentatively sounded each other out: ‘Do you believe in it?” Care had to be exercised, because two sufferers were in the audience, pale and thin-lipped ladies of vengeful appearance, waiting to pounce neurasthenically on those who dared to suggest their sufferings were other than virally induced.

From time to time I see cases of this mysterious condition, and in my heart of hearts I believe it to be a sickness not of the body but of the spirit. I am rarely the first doctor the sufferers have consulted: more frequently I am the 46th.

The patients come armed with sheaves of papers, pamphlets, documents and so forth to persuade me that there was never suffering like theirs, and that it is viruses that cause it. The whole episode is more like an attempt at religious conversion than a normal consultation.

‘What’s your position on ME? they say, more like an accusation than a question. ‘I don’t think ME is incompatible with a long life’ I remark, as mildly and dryly as I can.

Quite often I am handed a photcopied page of laboratory results, in the way that candidates for rather minor positions hand over educational certificates or personal testimonials. The results are of antibody tests ordered by doctors convinced of the reality of ME (by reality I mean, of course, the physical causation).

The antibody tests demonstrate that at some time in the past the patient has been infected with one or several viruses. The presence of these antibodies reinforces the conviction of the patient that he or she has an indubitably physical illness.

In vain do I tell the patients that my blood carries antibodies against hepatitis A, but this does not account for the tiredness against which I – like most of humanity – have long struggled. Koch’s postulates are not fulfilled by the mere presence of antibodies (or even of the allegedly causative virus themselves). Until some can demonstrate that viral infections produce the same effects in a population that has never heard of ME, I shall remain skeptical.

By now, it will be obvious to the reader that I do not have a completely open mind on the subject. . It is an escape route for the middle classes, especially teachers and paramedics such as physiotherapists, occupational and speech therapists.

I do not in the least blame them for wanting to escape. Anyone who had dealt with modern British youth or the public at large must often want to do that. But the desire to escape is not something they can easily admit to themselves, especially if they see themselves carers (horrible word).

ME offers not just an escape but something better still: a cause. You can suffer and, by joining one of the pestilential self-help or pressure groups, believe that in some way your suffering is not entirely in vain, but it is helping to bring about a better world.

Almost everyone I spoke to at the symposium agreed with me, but only in secret and only in hushed tones. Of course, the ME groups will take this as yet another sign of the medical profession’s criminal blindness and lack of understanding (how delicious it is to be misunderstood by everyone!) But in my opinion, the unwillingness of the medical profession to speak plainly on this matter is a sign of pusillanimity, not of obduracy.

My experience of ME sufferers is that they suffer triumphantly, and that their claim that the disease has ruined their lives is not to be believed. I could write a great deal more on this fascinating subject, but unfortunately I had the flu four years ago and am feeling rather tired.

Theodore Dalrymple is the pen name of a practicing doctor. 28/Medical Monitor/14 February 1992.” See one of the sections on the website here.

Former Olympic athlete Raelene Boyle
was misdiagnosed as having panic attacks and chronic fatigue

On 14th September 2012 the channel 9 TV show called “A current affair”presented an interview with former Australian Olympic athlete Raelene Boyle who described how she had previously been misdiagnosed with panic attack in 2000. She would often feel faint before giving public talks or when walking her dog, and have to stop to lay down to relieve the symptoms. However, earlier in her life she had been in situations of stress and didn’t think that it was possible for her symptoms to be due to stress or panic in such minor situations as walking her dog. She also suffered from fatigue and was tired and would sleep for up to 20 hours per day.

More recently, after having those debilitating problems for about 12 years, a doctor diagnosed that she had artrial fibrillation of the heart, and she had surgery to implant a pacemaker. Since then she has not had any symptoms and has been able to return to normal activities for a woman of her age of 61. She said that she hadn’t felt so healthy for many years.

My comment: Many CFS patients will report that they get chest pains and other symptoms for no apparent reason when there is not stress or any other obvious factor to account for it, and the same applies to their chronic fatigue. It is just a feature of their health that has nothing to do with stress or panic. See also here.

Why I was invited to design a research project to study chronic fatigue and exercise at the South Australian Institute for Fitness Research and Training in 1982

Part 1

When I was young I learned to swim at local beaches, and spent many years involved in sport and gymnastics. See here.

(The first photo on the right shows me doing a front somersault off a one wheel bike called the ten footer. It was actually 9 foot six inches from the base of the wheel to the seat. My feet are 12 feet in the air as I am halfway through the somersault rotation. At the top of the photo you can see the corner of the ceiling of the gym hall which was in a 2 story building. The man standing in the audience on the far left near the back wall is my father. He is looking casual, and was treasurer of the gym club, and later a president of the Edwardstown RSL. The other members of the audience are looking worried about the prospect of me falling on them. The 2nd photo shows me doing a straddle jump where my head is ten feet from the ground after a brief run up and bounce from a six foot long spring board. Notice the smile on my face, indicating that I enjoyed gymnastics).

However, by the age of 25 I had acquired many health problems, including exhaustion, for other reasons, and my doctor was unable to explain the cause, or treat them effectively, and that had been the case for several years.

I therefore decided that I would have to solve those problems myself so I began with the idea that I could start exercising at a low level, and gradually improve over a period of weeks, months, or years if necessary, until I became fit and healthy again.

At around that time I heard about an organisation called the South Australian Institute for Fitness Research and Training, so I made some enquires, and found out that it had exercise classes which anyone could join.

I therefore enrolled and then the first thing that each person was required to do was to undergo a medical examination where they were placed on a stationary exercise bike, and had several wires attached to their chests by suction cups with the other ends connected to medical testing equipment such as cardiographs. They were then asked to peddle for 3 minutes, and rest, and then a measured pressure was applied to the brake and they were asked to peddle for another 3 minutes, and then rest again, and the pressure on the brake was increased each time through several phases. The information of load over pulse rate etc, was used to produce graphs which gave a scientifically accurate and reliable calculation of their aerobic capacity, which is essentially their fitness level.

Soon after that I started attending the exercise classes which were conducted twice per week for an hour each time.

Each class began with 20 minutes of light exercises, followed by floor exercises which included pushups. However, while each person was asked to do about 20 pushups I could only do 2 or 3, and was not able to do them properly. That session was followed by 20 minutes of walking or running along a 400 yard track around an oval. However, I could only walk slowly, and when I started jogging I would soon need to stop to get extra breath, but I continued to stop and start at that slow pace as all the other runners out lapped me. We then had another 20 minutes of various activities.

At that stage, where I was coming last on the field, I had to decide what to do, and I only had two choices.

i.e. Go back to my doctor who didn’t understand the problem and couldn’t treat it, or continue with the fitness sessions with the view to very gradually increasing the level of activity and returning to my former capacity – so I kept training.

I gradually increased the pace of my walking and jogging, but it was still slow and intermittent, and I gradually increased the frequency of exercise from twice per week with groups at the institute venues, to three times per week, and then to an additional 1, 2, and 3 times per week on my own at local ovals, or six times per week in total.

I kept training in that manner for about ten months when I injured my knee cartilage and had to stop.

At the start each person was given a card where they recorded the date they trained and their pulse rate etc. One of my cards, from the last few months of training, showed that I trained 5 times in a 10 day period, or once every second day, but I probably trained more than that but did not record it every time I trained on my own.

In the meantime my general health had improved somewhat, but not to the extent of normal health, and I had my aerobic capacity measured at least three times.

At the outset, when my aerobic capacity was first assessed, the level was so low that it couldn’t be measured properly, and was recorded as zero. After 3 months of training it had increased to 350 kp’s.

A form provided by the Institute has it’s letterhead and shows that information signed by, assumedly, one of the research cardiologists, with the comment “V good improvement allround”. Other information appears to have been added by me as notes, and shows that at the next medical assessment my fitness was measured at 350 kps indicating that I had a physical limitation which did not improve any more despite the increased activity and frequency of exercise. The notes also show for comparison that a friend of mine, the same age, who played sport on Saturday mornings and trained on Wednesdays had an aerobic capacity of 900, and an athlete at the olympics would be 1200 or more, and a sedentary worker who did no exercise 700, and a 40 year old overweight asthmatic who I met there had a capacity of 600. In other words my level was about half normal.

After I stopped training I continued to try and improve my health by studying the ailment, and began by buying a small Readers Digest book called The A-Z of medicine (or something similar), and by reading one word a day I found the name of Da Costa’s syndrome where the symptoms matched my own.

I then started reading books of anatomy, and then gradually learning the medical terminology, and after a few years was reading medical reference books and research journals.

I then came across a book which suggested that when patients with that condition were young they had been protected from the hazards of sport by their overly cautious mothers, and had therefore never been involved in physical activity, and hadn’t developed the normal fitness or stamina of other boys, and consequently, as adults, they were easily exhausted by effort, or had a fear of exercise. That book, published in 1956, was by Paul Wood, Britain’s top authority on the subject, and had a major influence on world opinion for the next 20 years.

A year or so went by when I found another book which said that the people who were trying to do research into the effects of exercise on chronic fatigue were not able to do so because the patients “could not or would not train” in the prescribed manner. The comment “could not” referred to a possible physical cause, and the additional remark, ‘would not” referred to the idea that the patients could exercise if they wanted to, but that they refused to train, or were afraid to train,

I knew that the symptoms were not due to the lack of exercise, or the fear of exercise, and that it was possible to train because I had previously done it all myself.

Several more years went by when I met a friend who I hadn’t seen for a long time, and discussed those matters. He said that he knew Tony Sedgewick who was the head of the fitness research institute, and recommended that I tell him about it.

I then phoned the institute, and was invited to a meeting where I discussed what had happened.

I also mentioned that he could verify the facts by checking his own organisations records from 1976 because my file, with my results, would still be there.

I then suggested that if his researchers organised the exercise program the way I had, that they would be able to get as much scientific information about the ailment as they wanted.

Essentially, the objective was to test people at the start, train them for 12 weeks, and test them again to scientifically determine the effects of regular exercise. However, where other researchers were expecting the patients to increase the pace and distance traveled each week, some would drop out in the first or second week etc, and none would be left to test 12 weeks later. I suggested that they would train for that period of time if they were asked to continue, and improve at their own rate, and within their own limits, and then some of them would still be there 12 weeks later, so It would be possible to test them and determine the effects.

He agreed and said that he would discuss it with his research staff.

I phoned him again a few weeks later and he invited me in for another meeting where he explained that his researchers were too busy on other projects. I was about to get up and leave when he said . . . “Why don’t you do the research yourself, since you know more about it than anyone else”.

If I was healthy I would have thought that was the best offer I had ever had in my life, but I explained that I still had health problems which would make such a task difficult. I also said that I didn’t have any medical qualifications, and didn’t know how I could be authorised to do such a project, and I didn’t know how to write research papers, and that a medical journal probably wouldn’t publish a study by a non doctor.

However, he said that I had qualifications in organising groups and that I could set up a committee, and that he would be on it, plus me which would make two, and that he could arrange for his two research cardiologists to do the medical testing, which would make four, and that he could give me the names of doctors who were interested in doing research, and that I could contact them, and would only need two more to produce an officially approved research team. I said that I would also need an experienced instructor who would understand and be willing to run the exercise program according to the specifications required, and he said that he knew several people who he could ask to do that.

I told him that I would think about it and let him know.

Over the next few weeks I kept telling myself that I shouldn’t commit myself to such a task, but ultimately I thought that if I didn’t do it, that no-one else would figure out what to do for another 100 years, so I arranged for another meeting where I agreed to do it, and the process began.

Part 2

At that meeting I was given information about what was required to set up the project.

I needed to contact a politician and apply for funds to gain official government authorisation, and then find two other medically qualified people to join the team, and I wanted to meet the instructor to assure myself that he understood the aims and specific methods involved.

In other words I wanted that person to understand that we were not trying to create athletes, but needed them to train in their own way, at their own level for 12 weeks. If we couldn’t do that we were wasting out time.

We also needed to recruit individuals to be tested.

I then sent a letter to a politician and attended an interview and later received a letter offering a small grant. The amount was just a token payment but it gave official approval for commencement.

I phoned and met several doctors who were interested in co-operating with a research project, and found one general practitioner, and one psychiatrist who were willing to join.

I met the instructor and found that he had university qualifications, and an interest in fitness, and experience in other exercise programs studying various health problems at the institute, and that he understood the objectives. He was ideal for the course.

We then needed to recruit people to do the training.

The head of the Institute arranged for anyone who enrolled in general classes to be assessed to determine if they were relevant to the fatigue program and directed them to it, and at one stage a letter was sent to general practitioners advising them of the program.

In the meantime, I contacted a medical editor of the afternoon newspaper called the “News”. The editor phoned the head of the institute to confirm the details and then published an article to invite people to attend.

The first article reported the announcement by the head of the institute of a possible world first study, with me as the research coordinator giving information about the type of ailment and inviting people to join.

Essentially, by that stage, everything was set up, and then proceeded as planned.

I then waited for three months, during which time the initial medical testing occurred, and the course of exercise training began, and continued to the second stage of testing. I then collected the files containing all of the information, and extracted the details, and prepared a report.

I then arranged another meeting with the head of the institute, and advised him that our objectives had been achieved.

In particular, that if the exercise principles which I defined were used then the patients “could and would, and did train” for sufficient time to gain scientific data on the relationship between chronic fatigue and exercise.

The pilot study had established a specific and reliable set of principles which could be used as a “standard” procedure for future studies of chronic fatigue, and could fit in with the existing range of projects such as those studying the relationship between exercise and arthritis, asthma, smoking, and over weight problems etc.

He then asked me to increase the number of people in the study, and to continue it for another 12 weeks as planned, and I agreed. I then contacted the medical editor of the “News” and a second article was published which reported the success of the program and invited more people to enrol.

Essentially it said that the head of the institute reported the success of the pilot study which could be a world first, with comments by me requiring more people joining the course.

Part 3

Everything then proceeded like clockwork again without the need to make any changes at all.

At one stage I decided to contact each of the 65 people who had enquired about the course to ask them to describe, in their own words, what they thought was the cause of their fatigue. I managed to arrange 48 phone interviews in which it became apparent that it was a physical condition with many different causes, and that once you’ve got it, you’ve got it.

However, in some cases they were unable to say when it started because there wasn’t an obvious cause. In other cases it was very clear, and followed a viral infection, or a pregnancy, or a prolonged period of busy activity for months or more without sufficient rest or sleep, or an emotional incident. Some of the individuals had adapted to the problem by changing their lifestyle.

My full account of those interviews can be seen here.

When the second 12 week exercise period had passed I collected the files again and extracted and assessed the results.

By then nine people had completed 12 weeks of training, and five of those went on to complete the second, and continued to improve their aerobic capacity, although generally at a lower rate.

It was evident that they had a physical condition which initially improved with exercise, and then evened out at a lower level than normal, indicating that they had a chronic illness with a chronic limitation, and that if they exercised within their limits they could do so for as long as they wanted to.

One appeared to be heading for complete recovery, but I was unable to determine why. He may have recently became fatigued, and was at the early reversible stage, or he may have had a different ailment, and I have discussed that elsewhere.

Only two became slightly worse, and one regained the losses and returned to the previous level in the second session.

I had, at that stage, the aerobic measurements for each individual and put them in a list from highest to lowest, and then phoned the instructor and asked him to tell me who was leading the group on the running track, and who was coming last. The outcome was that the person with the highest measurable aerobic capacity was coming first, the second highest was coming 2nd, etc, and the lowest was coming last, in exact order.

In other words there was scientifically measurable data from the laboratory which explained why some people had a lower capacity for exercise on the oval.

I then arranged for another meeting with Tony Sedgewick, and told him about the findings, and he asked me to organise a larger study of 200 people for the purposes of having more influence of world opinion relating to the topic.

However, I had other problems with my health which made it difficult to do the first study, and more difficult the second time, so it wasn’t sensible or practical for me to attempt a task of that size, so I told him that I would be leaving the project to find something else to do.

I also said that the existing individuals could continue to train under the same instructor for as long as they wanted to, and he could get more longer term data from them, and that he might be able to find someone else to organise the larger study by using the same principles.

I then completed a research paper on the methods and results, and sent it to the Australian Medical Journal who sent a standard reply indicating that it was not accepted at that time, and wishing me luck getting it published elsewhere. I then sent it to the New Guinea Medical Journal, and received a reply from the editor who expressed his appreciation for the article, and commented on it’s value, but that, regrettably, it was not written in the style suitable for his journal.

I knew the value of the idea, and that if I didn’t get something published that another person could repeat the process, and get the concept published, and claim it to be their own idea. I therefore tried to get something in the news papers, so I attempted to find a freelance journalist, and was directed to someone in Melbourne who I contacted by phone. He checked the facts with the head of the institute, and then prepared an article.

From what I understand they then send it to major Australian and overseas newspapers, and get a fee for each one which publishes it.

I checked the papers in my local newsagent and found that one was published in the Sydney Morning Herald, another in the Queensland Courier, and a third in the “West Australian”. Each news editor gave the same article a different title, and the title in the West Australian was . . . “Cause of mystery disease found”. I presumed that there were more in the London, New York, and other national capital city newspapers etc, but I could not confirm it.

I then put my research paper in my filing cabinet where it had been for more than 30 years.

See here

See a YouTube video which explains the PACE trials, and how encouraging people to improve in a consistently regular manner is not the way to do the exercises properly here.

Part 4

A few years later I was listening to the radio when I heard a report about a brand new disease of modern civilisation called the Chronic Fatigue Syndrome. It was obvious to me that “new” diseases don’t suddenly come from nowhere, and that in fact it was just another label for the fatigue that I had been studying. There have been more than 100 different labels for that ailment, but I had known it as Da Costa’s syndrome, and had been looking at the research literature under the name of “neurocirculatory asthenia”.

Part 5

A few more years went by when, after a blood test, a CAT scan, a bone marrow biopsy, and a surgical biopsy I was diagnosed and confirmed as having a form of cancer called Non-Hodgkin’s Lymphoma. The cancer was evident in my blood, my bone marrow, and in every part of my body including my chest and abdomen, so I was given two months to live with no hope of a cure, and was advised to write my will. See here.

I didn’t think that I could cure cancer within that time so I didn’t even try, but just read the basic literature on the topic and left all treatment up to my doctors.

In the meantime I had just written a small pamphlet about health and decided to continue. The process of writing had been causing me a lot of abdominal pain for many years, for reasons which I had assessed as being due to postural pressure on my abdomen.

However, despite my attempts to adjust my posture I had not been able to prevent the problem, so I was usually in pain after only a few minutes. I decided to continue publishing and distributing that book regardless, until I died.

There was always the risk that writing in so much pain would cause more permanent damage to my health, but it wouldn’t matter because I would soon be dead from cancer anyway.

The pain reduced me to writing one sentence, or one paragraph, or one diagram at a time, with the occasional essay, so the book is more of a collection of facts and evidence and clues to assist me, and anyone else to understand and find the causes of many illnesses.

In the process, I did, on more than one occasion, notice notice permanent changes in my digestive function.

My objective was to describe the cause of health problems in great detail to help other people prevent such problems in the future.

In 1997 I started noticing a tightening sensation in the centre of my chest which would occur after a short distance of walking. it required me to stop and within a minute or two the pain would pass, so I started walking again. Consequently I would stop and start 5 times if I walked 500 yards. I didn’t know the cause at first, but after a few months the pain was becoming progressively more frequent until it was happening every 10 yards, so I consulted my doctor. He diagnosed it as angina and prescribed me with a drug called Noten to treat it. The pain reduced by about 90% so I kept taking it. The pain was caused by a form of heart disease and is called angina. It is due to the build up of cholesterol in the blood vessels of the heart until they become so blocked that their is insufficient blood passing through to the heart muscle. A cardiologist then advised me to have coronary bypass surgery, but I had a book about Nathan Pritikin’s dietary treatment which I read and then decided to try that method. By eliminating cholesterol from my diet the build up in my arteries stopped and began to reverse, and after about 6 months I could reduce the dose of the Noten to half, and then none, and the pain didn’t return, so I was cured. However, it probably took about 2 years before I had fully recovered. See my full report here and my audio CD on the topic here.

Another year passed and I had learnt to type, and I had began experimenting with my writing position to prevent the abdominal pain. At first I put a 6 inch high shelf on my desk and noticed that I had less pain, and a few months later built another 6 inch shelf on top of it, and the pain became less of a problem. I also started to stand at a platform and write, and adding an angled platform which was somewhat like an artists stand, or a music stand with an angled attachment for the music sheets. I then learned to use a computer, and later, when I put the keyboard at waist height, and the computer screen at eye height I could type without having to lean forward, and the abdominal pain virtually stopped altogether. I have had some minor problems since, but nothing like the repetitive, and often long lasting and severe pain that I had previously experienced. See here.

While I was writing the book I was describing undetectable illness and pain which had been referred to in the following manner in the past . . . “It doesn’t show up on x-rays or blood tests therefore it is all in the mind”.

My intention was to describe the causes, aggravating factors, and nature of those pains in so much detail that it would be obvious to everyone that they were real physical conditions. The only difference was that they didn’t show up on x-rays like the illnesses which were called “physical”.

At around about that time a small lump about the size of half a golf ball had appeared on my neck, and over a period of 18 months had grown to the size of a hens egg. The cancer had turned aggressive so I had surgery to remove the lump, followed by six months of CHOP chemotherapy. Another 19 months went by when a scheduled CAT scan revealed that a cancer the size of a large orange was blocking my left kidney. I then had surgery to remove most of it, followed by three months of DHAP chemotherapy, and after making a partial recovery from that I went into hospital again to have a stem cell transplant, followed by MabThera chemotherapy.

I then had four years of side-effects which I have described here. and made a complete recovery except for baldness.

Part 6

Another year or two went by when a friend of mine suggested that I add some of my ideas to a new online encyclopedia called Wikipedia.

However, I had been publishing my own books and website since 1994 so I hadn’t needed newspapers or journals since then, and my website had often been in the top ten list on the Google search engine for Posture, and I didn’t even notice Wikpedia mentioned anywhere even if it was there, which I doubt.

My friends also told me that school teachers and university professors would not allow their students to use it as a reference because it had been compiled by teenagers, vandals, and amateurs, and was poor quality and unreliable

Nevertheless when another friend told me about it I decided to have a look.

It said that you could write about anything, including your own research, because they preferred reviews from other people. Consequently, if you did, some of the other editors might delete it on the grounds of conflict of interest etc. so I decided not to bother.

However, when it was again recommended to me I decided to join and add about a paragraph of information per week, on any one of 100 miscellaneous topics, particularly from history, because it wasn’t known to most modern writers, and I would be improving it’s knowledge base, without even trying.

I had been writing in a more or less anonymous way for 30 years to avoid prejudice and discrimination, and I did that by using my real name of M.A.Banfield instead of Max Banfield, and I never showed a photo of my face in my essays, books, or website.

In that regard, when Wikipedia allowed people to edit under their real name, or by using an ID, I chose the ID method.

I had been writing about posture and health for much of the time so I called myself “Posturewriter”.

I then proceeded to add information to several pages. For example, on the page about chest pains I said that poor posture was a cause, and on the page about Varicose veins I added tight leg garters as a cause.

I then received an email from someone who I had never met, and who had read my book in her local library and told me how useful it had been to her in understanding her own illness, and how much she appreciated it.

I therefore asked her if she would write an independent review for Wikipedia, and I said that my 1000 page book was complicated, and that I would prepare an accurate one page summary for her to rewrite in her own words if she agreed with it.

She was an excellent writer and provided a better article than I could have produced myself, but a some time passed when I made a few minor changes and asked her to add the word “hypochondria”

It changed the page from being about “posture” as a cause of “multiple undetectable aches and pains” to a page about “posture” and “hypochondria”.

Within a short time an editor set up a discussion to have the whole page deleted, and up to six completed it with the comments “delete, delete, speedy delete” etc.

It was obvious to me that there was a group of editors who didn’t want anyone to prove that the psychology theories were wrong, or even shed any doubt on them. They wanted all of the readers of Wikipedia to believe that if an illness didn’t show up on x-rays that it must be “all in the mind” because no other explanation was known or possible.

They accused the woman of breeching my copyright, so I entered the discussion to say that I had given her permission to write the review, and then they required me to prove that I was the author, in which case I had to give my real name, and the name and dates of publications. Despite giving them all of that information they deleted it anyway, without giving a reason, and although I had the opportunity to appeal the decision, I gained the distinct impression that it would be a waste of time, so I didn’t bother.

Part 7

I then started looking for other pages to add to such as posture, backaches, faintness, corsets, fatigue, rickets and fashion and health etc, when I came to a page called Da Costa’s syndrome.

It had only four lines of text, and no references at all, and an invitation to help improve it, so I started by improving the details in the description, and by adding some top quality references, such as the original research paper by Jacob Mendes Da Costa from 1971 who the ailment was named after. I then added a summary of my own ideas and research.

Within a short time two editors started criticising me in an arrogant, dictatorial manner, as if they were the owners or Wikipedia who had the authority to dish out orders and treat me like a fool. They deleted everything I wrote on the grounds that there was nothing about my ideas in what they called the “real” literature, and described me as a non-notable fringy kook who was writing nonsense. They also argued that my ideas took up too much space, so abbreviated it and put it back, and then immediately acted as if I had been deliberately disruptive, and they deleted it again, and then tried to set up three different discussions to get me blocked from the page, including one where they wrote thousands of words accusing me of “conflict of interest”.

However they said that they appreciated my other efforts on the page where I had described the ideas of other researchers.

Those references were top quality articles from the history of the research so I began adding more.

The two editors became even more hostile and accused me of using poor quality information from references which were “old”, “out-of-date”, “obsolete”, and “from before most editors were born”.

A few more months went by when two uninvolved editors suggested that the dispute could be resolved if each of us wrote and article outside of Wikipedia, making a total of three, and then put them back for them to assess and produce one article which represented a truly “independent” and “neutral point of view”.

My two critics didn’t write anything, but when I put mine back and nobody criticised it, I used it to replace the existing one. My two critics then deleted it, and replaced it with the previous one, which was theirs, and which they called “neutral point of view”.

Within a month they had managed to get an administrator to use their “ignore all rules” policy to ban me.

I had the opportunity to appeal that decision, but I had gained the impression that if the could ban me by “ignoring all the rules”, then they could keep me out by “ignoring all the rules” so I didn’t bother.

I then decided to become a critic of my 2 critics and began by gathering evidence that they were both prolific liars.

I had also noticed that while I was contributing to pages about posture and Da Costa’s syndrome, and my two critics were describing it as nonsense and deleting it, that other anonymous editors were rewording the same ideas and adding them to other topic pages.

That process continued after I was banned, so some of my ideas have appeared in pages about posture, chronic fatigue syndrome, postural orthostatic Tachycardia syndrome, orthostatic intolerance, and costochondritis, which are essentially just different labels for the same ailment.

In other words they don’t want any of their readers to know that I exist, and that I produced those ideas, but they do want the ideas because they are the best available, and the want Wikipedia to get the reputation of having the best information.

I have also noticed that they are manipulative individuals who have portrayed themselves as highly experienced, trustworthy, and respectable, rule-abiding members of the Wikipedia community, so when I criticise them they are defended by their supporters, and the other editors who feel the need to defend all of Wikipedia’s reputation.

Part 8

A few more years went by when I joined Twitter and saw a comment about a person called Simon Wessely being granted the John Maddox Prize, for his courage in science. Various websites report that he began his studies into “medically unexplainable illnesses”, and was helping patients overcome the stigma of the disease by arguing that the problems were physical and not mental, and he made specific reference to the “Chronic Fatigue Syndrome” which had previously been trivialised as just “Yuppie Flu”.

It was also reported that he had been involved in defining the condition, and developing “new” methods of treating it called and “Graded Exercise Therapy”. They also refer to his style of treatment as involving light exercise gradually improving with time by avoiding the levels which cause fatigue.

A few months later he was granted a Knighthood for his contributions to medicine, on 1st January 2013.

I have spent 37 years, since 1975, intermittently, but consistently describing in detail, and researching the physical basis for undetectable illnesses, including chronic fatigue, and I developed the exercise method for treating it in Adelaide in 1976, and scientifically proved it and had newspaper articles reporting the success between 1982-4. Simon Wessely started three years later, in London, in 1987.

Part 9

Since writing this essay, I have found some more information. Firstly, I would like you to recall that after I proved the concept of training within limits to get success with 12 week exercise programs, I then reproved the concept in a second study, which made it a reliable and standard method. The head of the research institute then asked me to do a larger study of 200 people to have a major influence on world opinion. However, I still had health problems and a study of that size was not practical so I left the program.

I then prepared a research paper summarising the results, and sent it off to two medical journals. When they didn’t publish it, I put it away in my filing cabinet. Therefore, it is quite likely that the only thing that future researchers could copy was the general principle, but not all the details, which is probably what Simon Wessely did, from 1987 onwards.

Twenty years later I joined Wikipedia and added some information about that project, but two other editors began defaming me with their ill-mannered, relentless, hostile, and vindictive insults aimed at discrediting me so that they could delete almost every word I wrote, and then they arranged for the “ignore all rules” policy to be used to ban me..

I therefore decided to look for my old research paper from 1982, and scan it into my computer and load it onto my website, so that other people could see that my ideas and research existed, and were better than the nonsense which remained in Wikipedia.

However, something else happened which I will suggest.

Firstly, the two editors or their anonymous cohorts then rewrote the ideas methods in different words, and put it on other pages, to steal my ideas.. However, other researchers could do the same, and then get the results published in medical journals, and claim it to be their own concept.

It would take awhile to decide to copy the methods, by 2009, and about a year to organise a major study, making it 2010, and then a year or two to do the major study, and submit it to journals and get it published.

A few months ago, in January 2013, I saw a report of a major study by a colleague of Simon Wessely’s, professor Peter White, who had just completed a major study of chronic fatigue and exercise, involving 650 people, and had it published in a medical journal.

In summary, I developed and scientifically proved and standardised an effective and reliable method of exercise for chronic fatigue in 1982. Simon Wessely began copying my general principles in 1987, and Peter White began copying the details of my methods after they became available on my website in 2008.

Part 10

I would now like to finish by discussing the fact that when I proved the concept in 1982, I knew that other researchers would have to use my ideas in future, because all other methods would fail. I was also aware that they should properly and ethically give me the credit, but also that some researchers would be tempted to claim the method to be their own.

My first indication came when I heard the announcement of a brand new disease called The Chronic Fatigue Syndrome a few years later, with comments that it was a physical condition of unknown cause.

I later heard occasional comments in the media about treatment methods which were virtually identical to the ones which I had proposed, and was continuing to write about in my books and website, and I got the impression that there was not just one, but several people copying me, but I didn’t investigate the possibility. I also vaguely remember hearing the name Wessely mentioned.

However, when I joined Wikipedia in 2007 I was soon being criticised by one particular editor, and their constant tag-teamer who called my ideas and research stupid nonsense and rubbish, and deleted it.

I wondered why they spent the next 12 months insulting me, and were so hellbent on getting me banned.

However, four years went by when, in about October 2012, I learnt about Simon Wessely getting the John Maddox prize for his contributions to medicine, with respect to his study of the chronic fatigue syndrome and “Graded Exercise Therapy”.

I then searched for information about that method, and found that it involved gradually improving the level of fitness by exercising regularly, by staying below the levels which caused fatigue etc., and that was one of my key principles.

I then became curious to know when he began studying this topic, and soon found that he started in 1987 in London, just four years after I scientifically proved the method in Adelaide.

I then began looking for, and providing evidence that he has copied my method, and has been reading about my observations, descriptions and ideas in my books and website etc, since. He has been shadowing me, and learning about the ailment, and how to manage the symptoms, and then getting the ideas published in books and medical journals, while claiming them to be his own ideas.

Then, in April 2013, only a few weeks ago, I became curious to know if Wikipedia had a biography page about Wessely, and if my two critics were so determined to get me, and the information about my research out of Wikipedia, so that nobody would notice, or even bother to ask the question if he copied me or not.

I found that Wikipedia has a very large page about him which thoroughly documents his numerous awards and prizes for his contributions to medicine, primarily in the area of chronic fatigue research. He has dominated most international medical discussions on the topic for thirty years.

The following words are a quote from that page .

He has quite clearly been copying my ideas and methods and claiming them to be his own, and he is being protected by two of Wikipedia’s editors, namely WhatamIdoing and Gordonofcartoon, who have defamed and discredited me and my research, and made certain that the public don’t know that I exist in that internet publication which now dominated the world.

I will end my talk now with the suggestion that they are treating you like mushrooms by keeping you in the dark about me, and feeding you on bullshit.

I want you to reverse the process and drown them in their own bullshit;

You can do something about the plotting and scheming of Simon Wessely, and the two Wikipedia editors, by telling every man, woman, and dog on the planet, and especially in their own home suburbes, that I did it first.

Get the two editors banned from Wikipedia, and Simon Wessely stripped of his prizes and knighthood.

Thankyou for listening. I will now answer any questions if you have any.

A quick summary of my ideas about Chronic fatigue syndrome and how they have been copied

When I was a teenager I had a lot of experience in sport, gymnastics and swimming.

However, by the age 25 I had various health problems including exhaustion which had accrued for various other reasons, and were not responding to any form of medical treatment so I decided to try to solve those problems myself.

Naturally, as you would expect, one of my first attempts was to join an exercise program with the idea of starting slowly and gradually improving my level of physical fitness until I returned to normal health.

However, I was unable to keep up with the other people in the course, so rather than stopping the training I decided to slow down and keep going. I could only do the light exercises, and walking, and slow and intermittent jogging.

I was very keen to get back to normal health, so naturally, I would try to increase the level of exercise each week, but when I did that my heart rate would increase abnormally, and I would have problems with my breathing, so I decided to slow down again, and keep on training, and increasing in a much more gradually way.

My fitness did improve, but then reached a level at which it remained the same regardless of the fact that I was doing more exercise, slightly faster, and more often per week, so I concluded that I had a physical limitation, and could remain relatively free of symptoms if I stayed within it.

I also drew the conclusion that the fatigue whIch I was experiencing at other times was due to similar factors related to the same physical limitations, and so, after making some very detailed observations about general lifestyle I decided to do less hurrying etc, and reduce the number of activities during the day, and their duration, and to get more rest in between etc.

By using those methods for a few years my health very gradually stabilised, and I became less easily fatigued.

I also wrote about such things in great detail, and in plain English, and had my ideas published as widely as possible so that doctors and patients would have a better understanding of the problem, and be able to treat it more effectively than before.

In 1982, when I discussed those ideas with Tony Sedgewick, the person in charge of the South Australian Institute for Research and Training, he asked me to co-ordinate a research project, where I was able to scientifically prove those principles.

About 3 years later I heard news reports on radio and TV about a brand new disease called the chronic fatigue syndrome, and I knew immediately that it was not “new”, but was just another label for the type of fatigue which I had been studying.

Many more years went by, when, in 2012, I found out that a person by the name of Simon Wessely had been given the John Maddox Prize, for his work in defining the chronic fatigue syndrome, and treating it with a “new” method called “Graded Exercise Therapy“, and “Cognitive Behavioural Therapy“. Soon after that he was knighted for his contributions to medicine.

When I searched for descriptions of those procedures, I found that the method of exercise involved improving gradually, and avoiding the levels which cause fatigue, which is the same principle which I developed. I then found that the Cognitive Behaviour Therapy was basically the same principles which I developed for adjusting lifestyle and related factors.

I then found various reports which said that Simon Wessely began his study of chronic fatigue in England, in 1987, just three years after I completed and proved my research at the IFRT in South Autralia.

See a YouTube video of a debate about these issued in the U.K. parliament on 6th February 2013 here.

See website reporting the criticisms and comments about the failure of the 2012 PACE trials here.

The Chronic fatigue exercise program design change

I developed a method of using exercise to treat my own chronic fatigue in 1976, and seven years later was invited to design a project for the South Australian Institute For Fitness Research and Training for other people with chronic fatigue. It was successful, and the principles which I defined have been used in research programs ever since. See here and here.

There is no difference between my method in 1982 “exercise within your limits” , and Simon Wessely later saying “stay within levels which don’t cause fatigue“, and the modern 2013 encyclopedia which says ‘stay within your energy envelope‘ .

In 1975 when I developed the idea of staying within my own exercise limits, I also applied the same principles to my daily activities and lifestyle to gain a better control of my health in other situations.

A description of that method which is given without any mention of my name can be seen in Wikipedia here. Another description can be seen where it is referred to as The energy Envelope Theory here.

Ordinary exercise programs and those which failed

People join ordinary fitness classes for many different reasons. For example, they may just want to get fit, or they may be preparing for the next sporting season, or a fun run. Some may also be using exercise as a way of recovering from an illness or injury.

In some cases they will be given a medical test to determine their aerobic capacity at the start, and again at the end of 12 weeks to determine their level of improvement.

The general idea is to start exercising at mild levels with slow walking or jogging, and to increase the number and speed of exercises each week. Usually some people will drop out in the first week, or the second etc, but some will still be there until the end.

However, when researchers were trying to determine the effects of regular exercise on patients who had chronic fatigue they found that all of them dropped out of the course before finishing, so there were none left to test.

One such program stated that the patients could not or would not do the prescribed exercises.

Identifying the problem

When I saw those comments I knew what the problem was and decided to solve it.

I assumed that the patients had physical limitations of varying degrees from person to person, and that as each individual exceeded their personal limits they would get distressing symptoms and drop out of the course.

Consequently some would drop out on the first day, others in the first week or month, and none would be able to keep up with healthy people until the end.

The exercise program which solved the problem

Therefore I recommended that chronic fatigue patients be kept in a group of their own, and that they be given instructions to exercise at their own level, within their own limits, and improve at their own rate. if they exceeded their limits to the extent that their symptoms began to trouble them then they should slow down, and rest or stop, and then continue at a more moderate rate, or perhaps start again the next week at a lower level. They were also able to leave the course at any time they wanted if necessary.

Consequently some of them were able to continue exercising on a regular and consistent basis for 12 weeks, and it was possible to gain scientific data on their aerobic capacity, and some did gain measurable improvements.

In fact, the program was so successful that it proceeded into a second period, and then a third, while I was still organising it, and it continued after I left. See some newspaper articles which record the success of my research project here, and online here and about my research here and here.

(Note that some people with chronic fatigue might not be able to exercise, so nobody was forced to join the classes, but they were invited to if they thought it might be helpful).

Why other researchers have copied my method and are now using it and calling it the best

Up until 1975 there had been many attempts to get chronic fatigue patients to exercise but there was a large element of guesswork by doctors, and a considerable element of doubt about the process in patients, and mixed results.

In 1975 I developed a method of treating my own chronic fatigue by using the trial and error approach, and in 1982, when I was invited to design the research project for other people, I removed the element of doubt.

Since then doctors have been able to organise such programs with confidence, and patients have been able to see the logic and sense in setting their own limits, and have been able to participate with confidence.

You can now appreciate why it would be impossible for anyone to get results unless they used my method, which is why it has been copied since by many organisations around the world, including Simon Wessely. It as been called PACING and Graded Exercise Therapy, with slight variations on the theme, but where the basic principle which I developed, are the same.

See my report on other people who have copied the idea here.

This is description of Graded Exercise Therapy by the Mayo Clinic . . . “The graded exercise therapy means exercise using a physical therapist to set up a program to gradually increase the intensity of the exercise so as not to fatigue the individual.” (end of quote) here. That quote is just a rewording of the principle which I told the instructor to use at the IFRT in Adelaide in1982 here.

The standard method of gaining Scientific proof of concept

including the Peer Review Process

Step 1. You need to produce and idea for solving a problem – which I did

The method had three principles

. . . (a) The person with chronic fatigue needs to exercise at their own pace and within their own limits to make gradual improvement where possible.

. . . (b)The person needs to needs to modify their general lifestyle in a similar way.

. . . (c) The person needs to be given instructions on the general nature of the problem and how to modify their lifestyle, and other factors which may be contributing to it.

Step 2. You need to establish a project to test and prove the concept – which I did.

Step 3. You need to redo the procedure to prove that the first results were not just a coincidence – which I did.

Stop 4. You need to redo it again to confirm the results – which I did.

Step 5. The same methods need to be retested by people who are independent of the original person, and is generally referred to as the peer review process. The same methods which I perfected between 1976 and 1983 have been used in many studies since, and again recently in January/February 2012 by professor Peter White, as can be seen in the table below . . .

One fact remains – nobody is acknowledging that I produced the original concept which has given 2 Wikipedia editors the opportunity to argue that my research was “NON-NOTABLE”, and “ORIGINAL RESEARCH” which has NOT BEEN INDEPENDENTLY VERIFIED and therefore had to be deleted. See here.

The 2011 NIH workshop drew exactly the same conclusions about treatment which I defined in 1982

Also notice that the report from the NIH 2011 workshop contains the following treatment recommendations which were defined in my research project in 1982. One page from my project can be seen above, and the other relevant pages can be seen here.

Since then I have described how I manage the daily symptoms in great detail in essays, books and on my website, and many people have copied them, and most people who use those ideas don’t know who produced them because they have found the methods in books written by people who copied me without acknowledging the source.

The medical advice given to chronic fatigue patients in 1975, and why I had to develop something new

The general advice which doctors gave to all chronic fatigue patients, including myself, in 1975, was that there was no evidence of disease on blood tests and x-rays, and that therefore there was nothing physically wrong, that the fatigue was normal, or due to laziness, the fear of exercise, and the lack of exercise, so just think positive and ignore the symptoms and run faster, and faster, and faster until you are healthy again.

I knew from personal experience that the advice was wrong, and that I would have to develop my own methods of treating the ailment. e.g. See here. Nowadays most chronic fatigue patients are treated with my methods which include exercising within limits, and leading a lifestyle within limits, and everything related to that general idea of reducing and modifying activity levels to an appropriate and manageable level..

The S.A. Research Matched Russian Results

Nowadays patients who have persistent problems with fatigue are sometimes diagnosed with the chronic fatigue syndrome, but in 1980, in the U.S. it was still being called neurocirculatory asthenia, and in Russia it was called neurocirculatory dystony where V.S.Volkov measured the aerobic or fitness capacity and found it to be lower than normal. Other researchers were trying to determine if regular exercise would improve the fitness and health of such patients but were not able to because the patients were dropping out of their programs before the effect could be re-measured.

Meanwhile, back in South Australia in 1975, I had that ailment and thought that regular exercise might improve my health so, in 1976 I joined a course at a fitness research institute. I was unable to keep up the pace of the healthy people, so rather than drop out, I decided to continue at a lower pace of walking and slow jogging. Everyone in that course had their fitness measured at the start and after each 12 week session, and mine improved but then stabilised, but was still below normal. After about ten months I injured my knee cartilage and had to stop.

I also started reading the medical literature and when I found out about Volkov, and the problems that other researchers were having, I knew that I could solve them. I was later introduced to the head of the research institute, Tony Sedgwick, in 1982, and I explained the problem and the solution. He immediately recognised the potential and ultimately invited me to design an exercise program specifically for chronic fatigue patients. I also explained that some of the patients might not be able to participate, but that some would, and the project proceeded according to plans with success and results as predicted.

I knew that those exercise principles would be the template for all chronic fatigue and exercise research in the future, and it is evident in subsequent programs called PACING and Graded Exercise Therapy.

Note that many attempts have been made in the past to encourage chronic fatigue patients to train at the same pace as healthy people, but they have invariably failed. The only effective way to get such patients to exercise is with mild but consistent activity.

However, some critics of that method argue that it isn’t enough exercise???, or isn’t real exercise???, and therefore won’t be any use???. They are essentially arguing that a person must run fast enough to build up a sweat before any benefits can be gained.

However, that simply isn’t true, and the idea of getting patients to exercise at higher levels is impractical. See why here.

I have studied this topic more extensively than any of my critics.

Another example of the independent use of my research by Fibromyalgiaaustralia

An organisation called Fibromyalgiaaustralia. has a four page account of the nature and treatment of chronic pain and fatigue for July 2012. The following table contains quotes from some of the comments.

From the International Encyclopedia of Rehabilitation 2013

Benefits from graded exercise first demonstrated in a 12 week study by Fulcher and White in 1997???

See my report on the typical treatment of chronic fatigue before I wrote my theories between 1976 and 1982 here

She how I developed my theories of physical cause here.

This is a quote from a current website of 2013 called the international Encyclopedia aof Rehabilitation . . .

“those people with ME/CFS who are able to stay within ‘energy envelope’ show significant improvements (Jason et al. 2009)” . . .

“Pacing self-management aims at stabilizing the patient’s health status. After the initial stabilization phase, a grading phase is initiated and comprises of graded activity or graded exercise therapy (Figure 1). During the grading phase, the same pacing principles are applied to grade both daily activities as well as exercise levels. When determining an appropriate exercise level, a formal, regulated exercise regime that is gentle, graded, flexible and manageable according to each individual’s capabilities is required. Support for this type of ‘grading’ for people with ME/CFS comes from an observational study (Coutts et al, 2001) and a well-designed randomized controlled clinical trial, which reported that paced and individually-tailored graded exercise was superior to relaxation and flexibility training in patients with ME/CFS (Wallman et al. 2004). The use of graded exercise therapy for people with ME/CFS will be further discussed below (section 4.5) . . .

“Benefits associated with graded exercise were first demonstrated in a 12-week randomized, controlled trial by Fulcher and White (1997) that compared the efficacy of graded exercise to flexibility exercises in ME/CFS participants. Since then, a number of studies have examined the effectiveness of graded exercise therapy for ME/CFS (e.g. Weardon et al. 1998, Powell et al. 2001). According to the Cochrane Library, graded exercise therapy is effective in the short term for treating ME/CFS patients (Edmonds et al. 2004). However, it should be acknowledged that graded exercise therapy is not suitable per se for all people with ME/CFS at any stage of their illness. Rather, graded exercise therapy can be one component of an overall rehabilitation approach to ME/CFS . . .

Introduction of exercise that is beyond a participant’s capacity may not only promote a relapse, but can also result in feelings of demoralization and pain, thus reinforcing avoidance behavior (Figure 1). Therefore, Wallman et al. (2004) introduced the pacing approach into graded exercise therapy for people with ME/CFS. They designed a graded exercise program that is flexible, realistic and manageable according to each individual’s needs and abilities. The program schedules rest periods in conjunction with the exercise periods, as this can help in establishing a manageable routine that can assist in promoting a sense of control over one’s life (Pheby 1997, Sharpe et al. 1997) . . . “Cognitive behavioral programs for people with ME/CFS combine a variety of treatment options, some of which are explained above (e.g. education, time-contingent activity management, time-contingent graded exercise therapy, stress management, sleep advice, goal setting, etc.) . . .

When explaining to people with ME/CFS that rehabilitation is not a cure for ME/CFS, it should be explained that conservative strategies will address perpetuating factors of ME/CFS, and hence lead to increased functioning rather than full recovery.” (end of quote) See here

The majority of the information in that article, about the physical aspects of CFS, could have been copied from the detailed descriptions in my essays, books, website, and research. e.g. See here. They may have been copied by earlier authors, so that since then the later authors were not aware that the ideas came from me, but nonetheless they are my theories and methods.

However, the authors mention the concept of kinesiophobia (the irrational fear of movement), and exercise phobia, which is a separate issue, and is not the cause of the abnormal response to exercise. They also refer to the “catastrophizing thoughts”, and “hypervigilance of symptoms”, and “somatization”, which refer to imaginary, exaggerated or psychological causes.

I have said many times before that the symptoms of chronic fatigue are completely different condition to the “fear” of exercise etc, and that those aspects are common to all illness, not just CFS. See also here and here.

I have also explained that the breathing abnormality in CFS is due to some sort of physical problem and has nothing to do with panic induced hyperventilation. See my YouTube video here.

This is some of what that other author says . . .

“decreased lung function (De Lorenzo et al. 1996) . . . a decreased peak oxygen uptake during exercise performance testing (De Becker et al. 2000), and an increased prevalence of hyperventilation (59%) compared to healthy controls (22%) (Bazelmans et al. 1997). Hyperventilation in not a causal factor for ME/CFS, but is likely to be a perpetuating factor for some patients, especially those having difficulties with acceptance (Bogaerts et al. 2007). See here.

What the people who copy my ideas don’t know

When I began studying this topic in 1975, I soon found, within a few years, that other people hadn’t previously understood the problem, so I started describing the symptoms in detail. However, I knew that some individuals would recognise the value of the ideas, and that I hadn’t been able to publish them in medical journals, so they would reword the concepts and get them published and claim them to be their own. I therefore decided that I would not publish everything, or even talk about some of the important principles which I developed.

When I read the encyclopedia entry above it is obvious that the authors have read my publications and copied them, or have read the work of other copiers, and not known that I was the originator of the ideas. At a rough estimate I would say that they have copied at least 20 of my concepts in a very clear, orderly, and articulate way, but they come from my books and web site where they are randomly scattered about in places where I thought of each of them one at a time, sometimes years or decades apart.

However, they have not published my unwritten ideas, because they haven’t got anything to copy, and they haven’t mentioned anything related to them, because they haven’t developed the ideas themselves.

In order to prevent anyone from copying more details etc. I will give a quick summary.

l,klo

I then empirically, and later scientifically proved that it was a physical problem, and not a mental one, and that patients could be given instructions on how to exercise, and in some cases gain improvements, but not necessarily a cure for their ailment.

The encyclopedia above gives the general impression that it is a physical problem, with physical limitations, which they refer to as the “energy envelope”, and the treatment is “graded exercise therapy” and “education“.

Some of my unpublished ideas, which are impossible to copy, are the Gh calculation, the Significant L principle, and the CB method etc.

How and why Simon Wessely has copied my research

My previous publications and newspaper reports about my research can be seen here.

It appears as though Simon Wessely has been regularly reading my essays, books, and website, and stealing and rewording my detailed observations, descriptions, ideas, and methods, and then getting them publshed and claiming them to be his own, and building a very successful research career for himself. He has recently been awarded the John Maddox Prize for courage in science, and been knighted for his contributions to medicine.

He has stolen my evidence of a physical causes for undetectable illnesses, but at the same time, has never mentioned my book as the source, and he has taken the credit in some places, but in others he is talking about the effect of illness as if it is just “beliefs” or “attitudes” rather than facts. See here.

There is the general “image” that all doctors are wise and all patients are “stupid” so the fact that I solved most of these problems upsets that false impression.

The following chart shows what I did, and what Simon Wessely has copied.

Creativity and innovation are supposed to be rewarded

In modern civilised society creativity and innovation is encouraged and rewarded because it is recognised that without it a log would still be a log, without being progressively changed into a wheel, and then a wheel into a cart, and a cart into a car.

Without innovation we wouldn’t have had the products of the industrial revolution or the computers of today.

The people who develop new ideas get the credit, and inventors get patents, and authors get copyright which gives them a monopoly to make money from their product or from the licences which they grant to others to manufacture and profit on their behalf in exchange for a percentage.

For that reason drug companies pay millions of dollars to scientists to invent medications that relieve or cure disease, and they get patents and have the drugs carry the name of their company, and they charge a fee for every packet of pills that is sold, and the owners or shareholders in the company make billions of dollars in profit every year, and every doctor who prescribes those pills gets a consultation fee for recommending it. Furthermore, that company has the protection of the law, and anyone who copies the formula can be banned from making those drugs in the future, and fined or jailed etc.

Furthermore, anyone who makes slight alterations to the original successful method has to acknowledge the source and pay a fee as well.

I can prove that I was involved in exercise research for chronic fatigue in 1982, and that it was successful, and that the success is recorded in newspaper reports, and, of course, if the formula or design was wrong it would not have succeeded. Also, I still have a copy of the original research paper in which I recorded the results

I knew that some people would try to copy it, and take the credit for developing the method, and profit financially from it, because any method which did not use my principles was guaranteed to fail, but I didn’t know exactly who, or how it would be copied.

Somebody has copied it, and others have copied the copy, perhaps without knowing that I was the originator of the method, so that it is now used all around the world under the names of PACING, and Graded Exercise Therapy.

I haven’t made any money out of that research, but many other people have, by repeating or confirming that research, and by charging a fee for running such exercise programs, and by charging a fee for giving the advice to patients, and millions of patients would have benefited from it by acquiring a better ability to manage their symptoms.

The denial of my rights, and the use of my methods without paying me a fee is a crime.

However, two anonymous Wikipedia editors have described me as a non-notable fringy kook whose ideas are nonsense, and yet Simon Wessely, who has copied my ideas deliberately, or inadvertently without knowing the source, has been given the John Maddox Prize for courage in science?, and a Knighthood for his contributions to medicine.

I have had a comment directed to me which is essentially this . . . “Too bad sucker, that’s life, get used to it“.

Civilised society is supposed to encourage innovation????

Why my research paper was not published

When I designed the exercise program for chronic fatigue patients in 1982, I knew that it would be successful before it even started, and when I was asked to repeat it for another 12 weeks, and again for a third time, I knew that I would be confirming the same results.

I also knew that it would be very easy for anyone else to copy the method and claim the credit for it, so I needed to get it published to prove that I had done it.

However, I was not a doctor and had not been taught how to prepare articles for journals, so I just presented it in the general style that i saw in the research literature. I then discussed the matter with the head of the institute and asked him if one of the research cardiologists would edit it for me to make it fit with medical publication format. He later advised me that they were too busy on other projects, so I posted it to two journals. One sent a standard reply that they receive many manuscripts and that mine wasn’t included in their small accepted list, and the other one sent me a polite reply about the merits of the study, but added that he couldn’t publish it because it didn’t meet their format.

I was then fully aware that anyone who was familiar with what I had done would be discussing the success of the project at local and interstate medical conferences, and talking about how I achieved success, and that anyone who wanted to copy the idea could easily do so and claim it as their own, unless I had something published to prove it was mine.

I did the research for free, so I didn’t have much money, and couldn’t afford to pay a professional academic writer to prepare the article in the formal style. I then managed to find out about an interstate freelance journalist, and phoned him to discuss the project. He asked me to provide the name and phone number of the head of the research institute to confirm that what I said was true, and then wrote an article.

I assume that he sent it to all major interstate and international newspapers, but the only ones I could find were those which were available at local newsagents and included the West Australian. the Sydney Morning Herald, and the Courier Mail in Queensland.

I then put the research paper into my filing cabinet where it stayed for about 25 years until I joined Wikipedia and two of the anonymous editors described me as a non-notable fringy kook, and my ideas as stupid nonsense.

I therefore scanned copies of my original research paper and put it on my website as evidence and proof that my research process was conducted in the proper scientific manner.

I also found that while the two editors were criticising me, they or their anonymous friends were also rewording my ideas and putting them into other topic pages, and then noticed that other people in the research world have been doing the same.

They will also be exploiting the fact that my actual research paper was not published, and be making all sorts of other excuses to justify their actions.

It is possible that many of the people who are using those methods nowadays don’t know where they actually came from, but nevertheless, they are my methods.

I proved the concept.

There is more than one way to prove that my methods have been copied

The proof of plagiarism would usually be me providing a publication of my research in a medical journal, and showing that Simon Wessely did the same.
However, my paper was not published, so the proof is as follows
1. If it was just an ordinary idea the head of the IFRT would not have accepted it as a project
2. If I didn’t know what I was doing I would not have been invited to design the type of exercises, and to co-ordinate the project
3. A newspaper article was published which shows the type of fatigue patient who was invited to attend
3. If the exercises were not designed properly the patients would not have started or continued.
4. If some of those patients completed the 12 week course it was proof of success.
5. The follow up newspaper article is proof of success
6. Follow up news articles were published as recruitment articles for the second trial, which is further proof that the first was successful, otherwise, if it failed why would the institute do it again.
7. Further follow up reports were published in newspapers etc which further proves success.

The exercise principles which I developed were successful, and any other type would fail, so mine had to be copied.
For example, Simon Wessely’s program had to involve gradual exercise, otherwise too rapid an increase would have resulted in a 100% drop out rate.
Wessely’s program also has to specify that if the person had problems with symptoms they should slow down, stop or rest etc. otherwise there would be a 100% drop out rate.
By contrast, if he copied my principles precisely he would have gaines success from sufficient numbers of patients to make it worthwhile, and he would have gained the same range of success, from those who didn’t start, to those who completed 12 weeks or more and stayed the same, improved or returned close to normal levels.

Simon Wessely could have deliberately stolen my ideas and play dumb, and not respond at all, in order to create the impression that it is not important enough for him to bother with.
He could ignore my suggestions that he copied my idea and hope that the issue of copyright theft goes away
He could claim that he invented the ideas himself, or that he developed them from other sources etc.
He could say that he had never heard or read anything about my ideas, or my essays or books, or my website.

He could even acknowledge that he has recently became aware of my comments and happily link to my ideas, accredit me as the developer of the first reliable method of understanding and using the exercise method.

However, what he can’t do is change the fact that I actually did do the research project in 1982, and it has been published in a sufficient manner and frequency as to prove that I actually did get it right.

Other people could argue that my ideas are simple, but they would not be aware of the previous misunderstanding of the aiment where the fatigue was regarded as “just normal” or due to laziness, the lack of exercise, or the fear of exercise etc. or the previous advice that all the person had to do was to join an exercise class and keep going until they got well etc. They also would not be aware of the time and detail in my descriptions of the fatigue in relation to exercise and other aspects of general living which no-one has previously noticed or understood.

Read how Semmelweis was ridiculed and driven mad for developing the antiseptic method for preventing disease here.

From The Cambridge History of Medicine

The attitudes toward chronic fatigue before I wrote my theories

In the 19th and early 20th centuries people who suffered from pain and fatigue or paralysis were diagnosed as having ‘nervous spine’, ‘neurasthenia’ or ‘fits’. Edward Shorter called such people “somatizers” and described them as suffering from “pain and fatigue that have no physical cause“, and suggested that they were playing sick as a means of consciously or sub-consciously seeking solace, attention, or social excuses. “Such somatizers have produced a fascinating succession of phantom diseases” and the “Archetypal Victorian ladies” collapsed on their beds, or had fits, convulsions, or paralysis, but, “By 1900 such operatic displays softened into a symptomatological chamber music”, of less dramatic symptoms of neuralgia, headache, and fatigue. Such patients were “frustrating to no-nonsense physicians such as the early twentieth Kentucky doctor who believed that “a good spanking”, or sometimes even a “good cussing” was the best treatment for such “evident hypochondriacs”. Nowadays the condition is called “myalgic encephalomyelitis or ME (also called ‘yuppie flu’ or Chronic fatigue syndrome)”. Reference: The Cambridge Illustrated History of Medicine (1996) p.111-112 See my full report on the history of treatment here.

Simon Wessely is a research Identity theft

Who is the hero, and who is the villain

Anyone who agrees that a former gymnast who developed CFS would invent an excise method for regaining fintess is being sensible.

Anyone who believes that a psychiatrist would develop a physical exercise method for treating CFS is being utterly thoughtless, dumb, and gullible.

Since 1975 I have been researching and describing, in detail, the physical basis for many undetectable illnesses which were previously regarded as imaginary or mental disorders, in particular chronic fatigue. I have also developed and defined methods of treating the problem which includes modified exercise programs and other ways of managing the symptoms. Nevertheless, I have, at times, been ignored or criticised in quite a hostile manner. During that time another person named Simon Wessely has been copying, or stealing my ideas, and claiming them to be his own.

However, a small group of Wikipedia editors, and others, including some of Simon Wessely’s colleagues, have been conjuring up some carefully crafted spin to portray him as the hero of modern medicine, and me as the villain. He has been awarded several prizes, and been knighted for his contributions to medicine, whereas I have been portrayed as a non-notable fringy kook, and a disruptive troll whose ideas are worthless rubbish and nonsense.

In fact, if anyone is the hero it is me, and Simon Wessely is the villain.

The history since my research of 1982-3

See my research paper, followed by my subsequent comments here.

When I designed a reliable exercise method for chronic fatigue, and scientifically proved that it as a physical condition in 1982-3, there have been major changes. The CDC of the United States officially listed the “chronic fatigue syndrome” as an illness in 1987, the U.K. government started providing funds to research the effects of exercise in chronic fatigue syndrome patients to the amount of more than eleven million dollars, and there have been many thousands of research papers published on the subject of CFS and exercise.

Here are a few examples . . .

“In 2000, a Belgian/Australian collaborative study entitled “Exercise Capacity in Chronic Fatigue Syndrome” was unequivocal: “Comparing the exercise capacity in our patients with data from other studies shows a functionality similar to that of individuals with chronic heart failure, patients with chronic obstructive pulmonary disease, and those with skeletal muscle disorder”. Specific findings included (i) the resting heart rate of patients was higher than controls but patients’ maximal heart rate at exhaustion was lower than controls (ii) the maximal workload achieved by patients was almost half that achieved by controls (iii) the maximal oxygen uptake was almost half that achieved by controls. This would affect patients’ physical abilities, leading the authors to comment: “This study clearly shows that patients with ME/CFS are limited in their capabilities”. Taken together, these findings “suggest that alteration in cardiac function is a primary factor associated with the reduction in exercise capacity in ME/CFS” (P De Becker et al. Arch Intern Med 2000:160:3270-3277).” and . . .

“In October 2004, at the 7th AACFS International Conference held in Madison, Wisconsin . . . Spanish researchers (Garcia-Quintana) presented their work on aerobic exercise, providing evidence of low maximal oxygen uptake in ME/CFS patients. This confirmed previous studies showing that patients with ME/CFS have a markedly reduced aerobic work capacity on bicycle ergometry.” and . . .

“In 2005, Black and McCully published their results of an exercise study in patients with ME/CFS: “This analysis suggests that ME/CFS patients may develop exercise intolerance as demonstrated by reduced total activity after 4 – 10 days. The inability to sustain target levels, associated with pronounced worsening of symptomatology, suggests the subjects with ME/CFS had reached their activity limit” (Dyn Med 2005: Oct 24: 4 (1): 10).” and . . .

“Black and McCully’s results concur with those of Bazelmans et al that were published in the same year. That study examined the effects of exercise on symptoms and activity in ME/CFS: “For ME/CFS patients, daily observed fatigue was increased up to two days after the exercise test. For controls, fatigue returned to baseline after two hours. Fatigue in ME/CFS patients increased after exercise” (J Psychosom Res 2005:59:4:201-208).” and . . .

“For all three PACE Trial PIs to have known conflicts of interesa about one of the interventions supposedly being tested in the PACE Trial and to be publicly known to be strongly opposed to that intervention casts serious doubt on the validity of their finding that pacing does not work.
It is therefore necessary to be aware that Adaptive Pacing Therapy (APT) used in the PACE Trial is very different from pacing as practiced by patients with CFS/ME. APT as used in the PACE Trial is a vehicle for incremental aerobic exercise and involves planning, achieving and sustaining targets. The CBT Therapists’ Manual states about APT: “Activity is therefore planned”, which indicates a structured activity regime, and the APT Therapists’ Manual lists other requirements for APT including “plan set activity in advance” (so activity must be “set activity”, not simply what the patient may be capable of doing at the time); there must be “activity analysis”; APT participants must “constantly review model, diaries and activity” and there is the requirement to “involve relatives”, which is nothing like pacing, ie. “doing what you can when you can”.

The Lancet article seriously misleads readers because the authors state: “Our results do not support pacing, in the form of APT, as a first-line therapy for chronic fatigue syndrome”. From his published record, Professor White was never going to support pacing, but it is improper to refer to APT used in the PACE Trial as “pacing”; the two are not the same, and other impeccable research (for example, Professor Leonard Jason et al; AAOHN May 2008:56:5) has found pacing to be beneficial for people with CFS/ME. This is yet another example of how duplicitous the PACE PIs have been.
The Minister went on to say: “Various noble Lords have paid tribute to the quality of the research”; they did, but their comments are without foundation, as the Countess of Mar and the international CFS/ME community are keenly aware.” (end of quotes) here.

The correct method of Pacing

The correct method of exercise training for chronic fatigue was invented by me in 1975, and has replaced all others because it is the only one which is effective and is . . . train within your own limits, not other peoples limits, and not prescribed limits. i.e. “doing what you can when you can“. re: the WM

The biased or falsified histories which avoid mention of my research and the change in direction in 1975, and after 1983

There have also been various histories written about the topic. Some of them trace it from 2012 back to 1987, and then stop. Others trace it back from the virus theories of cause in 2012 to the virus theories of the early 20th century and beyond, and miss the 1982-3 period, and some of them start in the 19th century, and miss the 20th century entirely, except for comments that it was classified as a neurosis in the mid 20th century, with the comment that now there is a more accurate and precise understanding of various aspects of the disorder.

Dr. Oz announces a revolution in medical culture on 20-3-13

In 1975 I had been told that none of my health problems were evident on medical diagnostic tests, and it had been implied, and in some cases stated that the symptoms were “all in my mind”. The widespread implication of that time was that such patients were “hypochondriacs” who complained about nothing.

I began looking for a more realistic cause and within five years was able to write an essay on the physical basis for those symptoms which I have since called The Posture Theory, and in due course spent another six years writing a thousand page book by that title. One of my objectives was to provide so much evidence of a physical cause that it would be impossible for any doctor, or any psychiatrist to argue that any patients with undetectable pain were hypochondriacs in the future.

On 20-3-13, on Channel 7 Television, Adelaide, Dr. Oz, on his show, introduced many of the audience members who had described how they had been to their doctors and been told that their pain was “all in the mind”, or that they were just depressed, or after drugs, and that they were the victims of prejudice etc. However he didn’t mention the label of hypochondria.

He then announced a new cultural revolution which was happening in medical practice based on a ground breaking discovery that pain was a disease in it’s own right which could occur because of memories in the brain which persisted after wounds in the body had healed. (I don’t wish to comment on that idea).

However he said that the main problem was that doctors couldn’t “see” the pain, and that many of them still believed that their patients were crazy, but that they were wrong, and needed to be educated to recognise that the pain was “not” all in the mind, but was real, and physical. He added that there was no such thing as a “pain-o-meter” which could accurately measure the severity of pain, and that it was whatever the patient said it was.

He also said that the pain came first, that naturally, depression was a common result, not vice versa.

He then says that he is calling on patients to help doctors in understanding their diseases.

I have already been describing such ailments in detail for 37 years, to help doctors and patients understand those ailments more realistically, and treat them more effectively, and remove the prejudice and stigma.

However, I have mostly been ignored, and two editors have described my research and books as non-notable nonsense and rubbish which does not deserve even one sentence in Wikipedia.

Now, Simon Wessely, and Dr. Oz are doing what I started and made inevitable, and they are famous, but most patients have never heard my name, and many people obviously don’t want them to know that I ever existed.

It was doctors and psychiatrists who created the “all in the mind” ideas, and the problems and prejudices, and they don’t want the public to know that a patient proved them wrong.

They want the public to believe that they, the new doctors, have removed an old problem themselves.

See the webpage about my theory here, and about the physical basis for hypochondria here, and the cause of undetectable abdominal pain here, and my eBook on the cause of undetectable physical illnesses here.

A Summary of the Changes in opinions about chronic fatigue 1975-2013

People who copy my methods, or steal the ideas by claiming them to be their own do not deserve respect, and those who find out about it, and allow other people to get the credit, don’t deserve my help.

All I can say is that the copies are not as good as the original, and copyright thieves are like photocopy machines. Without the original, all you have got is a blank piece of paper, and that is all you get out. See my report on copyright thieves above and here.

In 1975 I had many problems with my health, and my doctor said that he didn’t understand them, and that left me in a position where I decided, at the age of 25, that I didn’t want to spend the remainder of my life like that.

I soon found that the symptoms were generally regarded as no different to those experienced in healthy people, but that the patients were supposedly concerned excessively about the sort of problems that normal people wouldn’t complain about, so I decided to write about them in detail, to make the differences clear. See a list of my publications here.

Seven years later I was invited to design a research project to scientifically prove those differences at the South Australian Institute for Fitness Research and Training, which I did.

The following chart shows the ideas which dominated world opinion before I did my research in the left column. The centre column shows one of many newspaper articles which reports the success of my research project, and the right column shows all of the details which I wrote, and all of the methods which I used in that project, but they have since been copied by other people, who have not acknowledged me as the person who developed them, but they can be seen in all modern reports thirty years later, in 2013, in research papers, books, encyclopedia’s and official definitions and guidelines about the chronic fatigue syndrome, and surveys of patients has shown that they are regarded as the most effective form of treatment available today.

Needless to say, that my methods of exercising have improved a lot in the past 38 years, and I don’t have any problems in determining what to do. However, modern research programs are reporting that 51% of patients are worse off after the training that they were before, and some have become permanently incapacitated.

While copyright thieves are stealing my ideas and methods, and being given the credit, and the funding, and all the other related benefits, and while other people are not acknowledging that it is my methods, it is simply not worth my while to tell them what they are doing wrong, or how to correct all of their mistakes.

I could do that, but there is no guarantee that those ideas wouldn’t be stolen as well, so the only practical thing to do is to keep the methods to myself until I am given the credit for what I have already done.

I now write all my ideas and methods in code. See here.

How to solve the problem

If my research paper from 1982 was published in a top quality modern research journal, then I would be able to make it clear that I developed those methods, and then I could consider providing improvements to the methods as long as they were also publshed in research journals soon after, not 30 years later. See here.

What modern CFS patients need to know

When I asked my doctor what to do in 1975 he would shrug his shoulders in confusion and say he didn’t know. One of the suggestions that I was given later was to go to a small house in the suburbs where several older, middle aged men were sitting around a table and sticking icecream sticks together with glue to make small model cars and houses. It was called occupational therapy. They all looked miserable and bored so i never went back.

I kept on doing my own research and developing my own methods of treatment which almost everyone now copies.

When you watch the discussions amongst CFS patients today, they are discussing whether to do exercise or not, what to do, when to do it, and how to do it, and what to do if they have problems, and they do the same things about their problems in life in general.

The main change I have noticed is that they are not asking each other to pass the glue.

The label discussions about “chronic fatigue syndrome”

When I started studying my own symptoms I soon found that I had “Da Costa’s syndrome”, and a few years later when I asked a research cardiologist what the formal medical term was he said “neurocirculatory asthenia”, and when I started reading the research journals I found that it had at least six common names, and more than 100 in the past century of research where countless people have attributed it to almost every cause.

In 1982, Tony Sedgewick asked me to design and organise a research project to study the effect of exercise on patients with that ailment, where fatigue, and problems with exercise were the main identifying symptoms.

One of the first tasks was to make patients aware of the project and invite them to participate. I therefore contacted a newspaper journalist named Diane Beer. She asked me the name of the ailment, and I had to consider that most people with the problem didn’t known that it was called Da Costa’s syndrome or neurocirculatory asthenia etc, so I chose the word “neurasthenia” as the least jargonistic, and then told her that we needed people who had long term problems with persistent or recurring abnormal fatigue.

By 1983 I was able to scientifically prove that it had a physical cause, which replaced the old ideas that it was imaginary or psychological. and that a properly designed exercise program could help some of the patients, and the success of the project was widely reported in major interstate newspapers throughout Australia and probably internationally.

A few years later I heard people on the radio talking about a supposedly “new” illness called “the chronic fatigue syndrome“.

By that stage I knew a lot about medicine, and that diseases don’t just come from nowhere, but are often just new labels for old ones, and the discussions made it reasonably clear to me that they were referring to Da Costa’s syndrome.

I also knew that after I had proven it was a physical ailment, and not a mental problem, that someone would probably change the label to indicate a clear physical, rather than mental cause, and from what I have learned since that is why the change occurred.

I also eventually discovered that only four years after I had scientifically proven that Da Costa’s syndrome was a physical condition, the U.S. Center for Disease Control and Prevention recognised the label of CFS as a new item.

I had also been curious about who, and why the label was first invented, and at one stage I read that it was coined by a U.S. naturopath in the 1950’s and he attributed it to overwork.

As I said there has been more than 100 labels used for the same illness in the past 100 years, and their have been many heated arguments between those who believe one cause or another, with the most hostile insults being freely tossed about, and some even reporting death threats,

I actually thought that the label of Da Costa’s syndrome was the best at the time because it was named after the man who first identified it clearly, and because it didn’t give bias to any one of the unproven causes.

I also thought that the chronic fatigue syndrome was one of the best because it identified that there was s physical and not a mental condition, and involved an abnormal response to exertion as it’s main feature.

However, some people have been criticising that label because, in their opinion it confuses “normal” “tiredness” with the more disabling medical ailment.

However, when I started studying this problem in 1975 nobody I knew had ever heard of Da Costa’s syndrome, and yet it was a common ailment which affected 2-4% of the population.

The chronic fatigue syndrome is the same ailment, and affects the same number of people, but nowadays everybody has heard of it, and knows that it is a lot different than normal tiredness.

There were many reasons why patients or the public didn’t know anything about it in 1975, including that fact that Da Costa’s syndrome was an obscure label, and, for example, “neurocirculatory asthenia” was too difficult for most people to understand, remember, or pronounce.

By contrast everyone can understand, and pronounce, and discuss the label of Chronic Fatigue Syndrome, in self help groups, and at conferences, and on the radio, and they can confidently expect to be understood.

However, many people want the label changed, and most of those prefer “myalgic encephalomyelitis”, because they favor the virus, or the effect on the immune system as the cause, and are researching that aspect in the hope of finding a cure.

I have been a aware of that possibility, and at one stage in the mid to late 1980’s I attended a self help group called the chronic fatigue society where a woman was discussing the possible viral cause. I had my own ideas at that time, so I didn’t want to argue, or even join their group, but on the basis that two heads are better than one, I thought to myself that it was a good thing that I was not the only patient trying to solve the problem.

However, the current people who are favoring that idea prefer the label of Myalgic encephalomyelitis, so I will make some comment which are meant to be useful and constructive.

When I added information to the page about Da Cotta’s syndrome to Wikipedia two of their anonymous editors obviously didn’t want the readers to know the facts, so one of their ‘tricks’ to get the idea lost, was to delete it, but another was to invent a new page called “Somatoform autonomic dysfunction“. That label means “imaginary illness” or “hypochondria”, but it is also the type of complex jargonistic name that no ordinary patient is going to find or criticise, which is why those two editors wanted to use it

The process of looking for causes and cures is good, but I think that changing the label of myalgic encephalomyelitis could cause a similar problem of driving a now well known and studied ailment back into scientific and public obscurity.

To illustrate what I mean, I can give the example of asking an ordinary person what the word chronic fatigue syndrome and they will be able to tell you something about it, and that it is different to normal fatigue, and that some of their friends, or people they have met suffer from it.

By contrast, if you ask them what the know about myalgic encephalomyelitis they will possibly ask you to say the word again, or repeat the question, but are more likely to say “myelo – what” , or “myalgio – who” or “mmmmmm” or myalgio -whosamewhat”.

It is clear that most people are not familiar with medical jargon, so they can’t understand or even say the word the first time.

Using words like that creates the same problem as a Chinese man, speaking Chinese on an Australian TV show and expecting 99% of the population to understand it, when in fact it would probably be closer to one in a million.

I can practically guarantee 200 million patients who have chronic fatigue, that the only reason their condition is so well known today is because I started studying it in 1975, and went through the process of learning the medical language, and then writing about the topic in plain English.

If the two anonymous editors of Wikipedia had their way, the name would be “Somatoform autonomic dysfunction”, and would be classified as a mental illness, and patients wouldn’t know.

I therefore suggest that the name should be kept as the chronic fatigue syndrome, or if it is to be changed, that it be an easily useable term in plain English, so that people understand it.

At the moment one of the most popular names is ME/CFS, which includes the complicated acronym for Myalgic encephalomyelitis, which most people can’t pronounce, let alone understand, and Chronic fatigue syndrome, which lets other patients and most members of the public know what it is – a set of symptoms where an abnormal form of fatigue is the main one.

Horses for courses

Not the only cause, not the only treatment

Additional to the range of causes and treatment options

When I wrote my theory about poor posture being the cause of chronic fatigue I did so on the basis of many years of experience and detailed observations of my own symptoms, combined with a knowledge of anatomy and physiology, and reinforced by independent reports in the research literature. I then wrote about them to help other people understand and treat the ailment more effectively.

However, critics have argued that some patients don’t have that physique therefore the idea is wrong, stupid, or useless and should not be considered.

Similarly, when I developed a method of treating my own symptoms by using mild exercise within limits, critics have argued that some chronic fatigue patients can’t exercise, and some of those who try have adverse effects, therefore the method is wrong, stupid, or useless, and should not be used.

However, the same criticism can be made about every idea for cause, and every method of treatment.

Consequently, my ideas are an additional way of looking at the cause which does actually apply in many cases, and my methods of treatment are additional to the range of other treatments and can be applied where appropriate to improve outcomes where other methods are used, or when other methods are not effective.

See my reports here and here and here.

A new diagnostic method

In October 2012, I determined an entirely new way of researching and diagnosing the chronic fatigue syndrome, and may report the method later. I call it the Diagnostic Attenuation Study.

Email contact: banfieldm44@gmail.com

For more information about the chronic fatigue syndrome:

The South Australian Chronic Fatigue Society- ME/CFS Australia (SA) Inc.here http://www.sacfs.asn.au

The National Alliance for Myalgic Encephalomyelites here http://www.name-us.org/index.html

An article from the National Alliance for exercise testing here

A website called Doctors CFS page – Chronic fatigue syndrome information for medical doctors here