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An analysis of the scientific legitimacy of the claims that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are appropriate, safe and effective treatments for people with Myalgic Encephalomyelitis.
Copyright © by Jodi Bassett, September 2006
It is often claimed that some level of psychiatric causation of Myalgic Encephalomyelitis (M.E.) has been scientifically proven. It is also often claimed that therapies based upon this theory – such as CBT and GET – have also been scientifically proven to be appropriate, safe and effective for these patients.
But what these studies actually show – if you look at the selection criteria used – is that where patients are selected solely on the presence of the symptom of chronic fatigue there is some preliminary evidence that some proportion of these patients may benefit from these interventions. How is this relevant to M.E. patients unless the symptom of chronic fatigue and the neurological illness Myalgic Encephalomyelitis are exactly the same thing?
Chronic fatigue is a symptom of many different illnesses and has a large number of different and unrelated causes including vitamin deficiency, sleep disorder, depression, cancer, burn-out and many other psychiatric and non-psychiatric illnesses. Up to 20% of the population may suffer from some form of chronic fatigue.
Myalgic Encephalomyelitis has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is a systemic acutely acquired illness initiated by a virus infection. The illness is primarily neurological, but symptoms are also be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in M.E., several of which are unique to the illness. The presence or absence of fatigue is largely irrelevant in determining a M.E. diagnosis. M.E. can occur in both epidemic and sporadic forms and over 60 outbreaks of the illness have been recorded worldwide since 1934. Less than 1% of the population has Myalgic Encephalomyelitis.
The symptom of chronic fatigue and the distinct neurological illness M.E. each have a very different; cause, symptoms, aetiology, pathology (tests results), response to treatment, long and short term prognosis. Clearly chronic fatigue and M.E. cannot be studied interchangeably.
Thus despite popular opinion, there is in fact no evidence whatsoever which exists to show that Myalgic Encephalomyelitis can be caused or perpetuated by psychiatric or behavioural problems; nor that therapies such as CBT or GET are appropriate, safe or useful in treating M.E. patients.
How have these groups got away with making such false and misleading claims?
The issue here lies with how M.E. has been defined, or re-defined. The creation of many different definitions of what is now called ‘Chronic Fatigue Syndrome’ is how a particular group of psychiatrists (and others) have superficially ‘bridged the gap’ as it were between these unrelated patient groups so that they can fraudulently be discussed – to those who are not aware of the subterfuge involved – as if they were one and the same.
What is Chronic Fatigue Syndrome? How was it named? How is it defined?
The new name and case definition were created by the CDC in the US in 1988 by a board of eighteen members (many of them psychiatrists); few of which had studied either an epidemic of M.E., or any patients with the illness. This new criteria failed to select patients using any past or current research or lab work relevant to M.E., excluded the cardinal symptoms and signs of M.E. and instead focused almost entirely on ‘fatigued persons.’ Although the new name and accompanying definition were created in response to an outbreak of what was unmistakably M.E., both bore so little relationship to the existing history and literature on M.E. that the three more experienced members of the board refused to sign the final document. They withdrew themselves from the (CDC) definitional committee because the proposed new name for the illness and the definition that went with it were just too different from the Myalgic Encephalomyelitis with which they were so familiar.
There are now more than 9 different CFS definitions, none of which selects for patients with M.E. In the two most commonly used definitions the only essential symptom required for the diagnosis of CFS to be made is ‘chronic fatigue.’ Both of these definitions are also designed to expressly include those with psychological or psychiatric disease. All either of these definitions ‘define’ is a heterogeneous population of sufferers from misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue.
Today when the term CFS is used what is being referred to may be patients with/facts relating to any combination of: 1. Miscellaneous psychological and non-psychological fatigue states (including somatisation disorder) 2. A self limiting post-viral fatigue state or syndrome (eg. following glandular fever.) 3. A mixed bag of unrelated, misdiagnosed illnesses including Lyme disease, multiple sclerosis, Fibromyalgia, athletes over-training syndrome, depression, burnout, systemic fungal infections (candida) and even various cancers 4. Myalgic Encephalomyelitis (most M.E. sufferers are given a CFS diagnosis by default). The vast majority (an estimated 80 - 90%) of the research and articles available today which use the term CFS are not in any way concerned with, or relevant to, Myalgic Encephalomyelitis patients.
Why did M.E. suddenly need to be renamed or redefined at all?
M.E. was ‘redefined’ not for medical reasons but for the benefit of a number of political and financial considerations. There was an enormous rise in the incidence of M.E. in the 1980’s and so it was at this time that certain vested interest psychiatrists and others involved in the medical insurance industry (on both sides of the Atlantic) began their campaign to reclassify the severely incapacitating and discrete neurological disorder known as Myalgic Encephalomyelitis as a psychological or ‘personality’ disorder; in order to side-step the financial responsibility of so many new claims. As Professor Malcolm Hooper explains:
A political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored. To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support [for M.E. patients].
This is the reason why the charade that M.E. could be a psychiatric disorder continues; not because there is good scientific evidence – or any evidence – for the theory, or because the evidence proving organic causes and effects is lacking – but because such a view is so financially and politically convenient and profitable on such a large scale to a number of extremely powerful corporations and Government departments.
Wessely, Sharpe, Cleare and White (etc.) in the UK, their counterparts (and sometime collaborators) in the US; Reeves and Straus (etc. of the CDC), in Australia Lloyd and Hickie (etc.) and the clinicians of the Nijmegen group in the Netherlands each support a psychiatric or behavioural paradigm of ‘CFS’ and recommend rehabilitation-based approaches such as CBT and GET as the most useful interventions for these patients. It is important to be aware that none of these groups is studying patients with M.E.
For more information on Wessely (etc) and more detail on the corporations involved – and on the politics of ‘CFS’ in the US at the CDC and in Australia – see Section 3 of this guide.
Studies by these groups (and others) involving miscellaneous ‘fatigue’ sufferers, and their response to these treatments, have no more relevance to M.E. sufferers than they do to diabetes patients, patients with multiple sclerosis or any other illness. Thus, patients with M.E. are being prescribed these treatments on what amounts to a ‘random’ basis medically and so the questions need to be asked:
What is the effect of graded exercise therapy (GET) on Myalgic Encephalomyelitis (M.E.) patients?
As (bad) luck would have it, graded exercise programs are probably the single most inappropriate treatment that a M.E. sufferer could be recommended to undertake. This is because one of the unique features of authentic M.E. is exercise intolerance – that patients worsen with exercise. Exercise or exertion intolerance is one of the many things which separates M.E. so distinctly from various post-viral fatigue states or other illnesses involving 'chronic fatigue.’ This is a unique form of paralytic muscle weakness which affects all muscles including the heart. M.E. expert Dr Ramsay explained that this unique characteristic: ‘is virtually a sheet-anchor in the diagnosis of Myalgic Encephalomyelitis and without it a diagnosis should not be made.’
The M.E. experts all concur; exercise can have many harmful effects on M.E. patients. The following comments which illustrate this point are provided by some of the world’s leading M.E. experts, all of whom have been specialising in M.E. for many years and each of whom has seen literally thousands of M.E. patients;
- Dr Melvin Ramsay M.D., a UK doctor who specialised in M.E. for more than thirty years, from the Royal Free Hospital M.E. outbreak of 1955 until his death in 1990, explains; ‘The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them.’
Dr. Elizabeth Dowsett explains: ‘There is ample evidence that M.E. is primarily a neurological illness although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Aside from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion’ ‘Prompt recognition and advice to avoid over-exertion is mandatory.’
- Dr Byron Hyde MD explains that: ’I have some ME patients with a circulating red blood cell volume less than 50% of expected and a very large number with the range of 60% to 70%. This, of course, means the brain, muscles, and peripheral circulation are placed in physiological difficulty.’ Dr Byron Hyde goes on to say that: ‘In MRI spectography of arm muscle of ME patients, it has been shown that because of an abnormal buildup of normal metabolites, the muscle cell actually shuts down to prevent cell death.’
- Dr. Paul Cheney explains that without exception, every disabled M.E. patient ‘is in heart failure’ and the disability level is exactly proportional to the severity of their Q defect, without exception. Findings which showed mitochondrial metabolic dysfunction also led Dr Cheney to comment, ‘The most important thing about exercise is not to have [patients with ME] do aerobic exercise. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.’
Surveys of M.E. patients on the effects of GET illustrate the accuracy of these findings only too well:
- In 1998 a survey of over 3000 UK M.E. patients found that the single most harmful strategy was graded exercise therapy. 50% of respondents who had tried GET indicated that graded exercise had made their condition worse.. The most helpful strategies were: a) Pacing activity with rest: 90% b) Bed rest: 89%.
- In 2004 a survey of severely affected M.E. sufferers again found that graded exercise was by far the single most harmful treatment. 95% said that graded exercise was ‘unhelpful’ while 82% reported that it had made their condition worse. A significant number of those surveyed indicated that they were not severely affected before GET
The way the bodies of people with M.E. react to exercise is abnormal in a number of different ways. These abnormalities are so pronounced that exercise tests are one of the series of tests which can be used to confirm a suspected M.E. diagnosis. It is also worth noting that none of these abnormalities can be explained by ‘deconditioning’ – the supposed reason for the recommendation of GET.
Strong evidence exists to show that exercise can have extremely harmful effects on M.E. patients; permanent damage may be caused, as well as disease progression: recent research has shown that postural stress (as well as exercise) exacerbates cardiac insufficiency in this disease. Patient accounts of leaving exercise programs much more severely ill than when they began them; wheelchair-bound or bed-bound or needing intensive care or cardiac care units, are common. The damage caused is often very severe and may be either long-term or permanent. Thus some patients are still dealing with the severe physical effects of inappropriate advice to exercise 5, 10, 15 or more YEARS afterward and for some patients this damage appears to be permanent. In addition to the risk of relapse, sudden deaths have also been reported in a small percentage of M.E. patients following exercise.
- In M.E., the body/brain no longer responds appropriately to homeostatic pressures including (to varying extents): physical activity, cognitive exertion, sensory input, orthostatic stress, emotional stress and infectious stress. Thus relapse is not caused solely by physical activity. See Myalgic Encephalomyelitis: The Medical Facts for more information.
- See Testing for M.E. for more information about the series of tests which can be used to confirm a suspected M.E. diagnosis (including exercise tests, tests of orthostatic intolerance, and of the heart-rate using tilt-table testing and Holter monitors.)
What is the effect of cognitive behavioural therapy (CBT) on Myalgic Encephalomyelitis (M.E.) patients?
There are two different types of CBT that M.E. sufferers may be given and the effect on patients varies greatly depending on which type is used:
- The first type of CBT respects that there is an organic illness present which is largely irreversible (and which cannot be improved by CBT), but aims to help a patient cope better with their illness.
- The second type of CBT is based on the premise that the patient's impairments are entirely due to ‘wrong thinking’ and that the pathophysiology of the illness is entirely reversible and perpetuated solely by a patient’s ‘false illness beliefs.’ According to this theory the therapy is potentially curative.
The hypothesis behind the first type of CBT is reasonable. This type of CBT will likely do the vast majority of mild - moderately affected sufferers little harm (if also very little good), while a small percentage may find it useful in improving the way they cope with the illness emotionally. A significant percentage of patients will also be made worse by CBT. Even this type of CBT however (or any other), is not appropriate for any severely affected sufferer who is not physically able to cope with the physical and cognitive rigours of such a treatment. Any type of CBT will cause severe relapse in those who are severely affected.
The hypothesis behind the second type of CBT however, is far from reasonable. This unscientific form of CBT (which ignores the demonstrated biological pathology of the illness) seeks to disregard the patient’s autonomy and experience of their illness. It tells them to ignore their symptoms. When, inevitably, this causes significant physical relapse, patients are told that this is entirely their own fault; that they must not be trying hard enough to get well and must still not be thinking ‘correctly’ about their illness. Patients are accused of ‘choosing’ to remain unwell because they are supposedly ‘enjoying the sick role’ too much. CBT to convince a physically ill person that he/she does not have a physical disorder is disrespectful, inappropriate and cruel. It places an additional (and bogus) psychological burden on a person already suffering with severe physical illness, and can cause significant psychological harm.
It is undoubtedly children with M.E. and their families who pay the highest price where CBT is involved however. This form of CBT is often far more detrimental to children as compared to adults. Equally concerning is the fact that because it is harder to pin the blame for the illness on depression or anxiety with children, the parents are often blamed instead. The ‘family dynamic’ may be blamed for causing the child’s illness and parents of these ill children have actually been charged with neglect or accused of actually making their children ill themselves and children have also been forcibly removed from the home and forced to undergo CBT and GET (and worse).
It is these additional associated burdens; physical relapse, the withholding of basic medical care, the removal of children from their parents and parents being charged with making their children ill themselves (etc.) which combine to make this form of CBT so harmful.
Clearly, CBT and GET are at best useless and at worst extremely harmful for M.E. patients
These treatments are also not just being offered to M.E. patients solely on a voluntary basis; many have been treated as psychiatric patients against their will. It is also of great concern that many M.E. patients are ONLY offered ‘treatments’ such as CBT and GET – while access to even basic appropriate medical care is withheld. A significant percentage of very ill and vulnerable M.E. patients are simply left to suffer and die at home without any medical care or support.
In conclusion
Despite popular opinion, there is no legitimate scientific debate about whether or not M.E. is a ‘real’ illness or not, or whether or not it is ‘behavioural.’ Substantial evidence exists to show that it is simply not possible that somatisation, secondary gain, malingering, aberrent illness beliefs, too much focus on normal bodily sensations, irrational fear of exercise leading to deconditioning, being rich and white, being poor and from an ethnic minority, being lazy and unwilling to work, being too highly driven and perfectionistic and working too hard, faulty thought processes, acute stress, abuse in childhood, a genetic inability to deal with normal levels of stress and contagious sociological hysteria – or any or the other ridiculous and often contradictory ‘theories’ put forward by these vested interest groups – play a role in causing or perpetuating authentic M.E. The psychological or behavioural theories of M.E. are no more scientifically viable than are the theories of a ‘flat earth.’ Strong evidence of the biological basis for the illness has existed since the 1950’s and more than 1000 good articles now support the basic premises of M.E. as a debilitating lifelong organic neurological illness (which affects virtually all bodily systems) and occurs in epidemic and sporadic forms.
The disease category ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes (etc). People with M.E. however are not the only patient group to be negatively affected by this politically-modified science. It is common for patients with a variety of different illnesses with fatigue as a major symptom to be misdiagnosed as having ‘CFS.’ Lumping these disparate patient groups together under a vague and meaningless category of ‘fatiguing illnesses’ only hinders each of the patient groups involved in their battle to regain their health.
There are also a variety of negative impacts on doctors and the public (and others) caused by the ‘CFS’ insurance scam. For example, those doctors which recommend CBT or GET to their patients are leaving themselves open to being sued when (inevitably) a proportion of these patients (those with M.E.) are made sicker by these therapies, or being sued by the families of M.E. sufferers who die as a result of these inappropriate interventions.
The only groups which gain from this ‘CFS’ confusion are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.
Sub-grouping different types of ’CFS’ would achieve very little and only create yet more confusion. The only way forward is that: The disease category ‘CFS’ must be abandoned completely
Patients with fatigue (and other symptoms) caused by a variety of different illnesses need to be diagnosed correctly with these illnesses if they are to have any chance of recovery; not given a meaningless Oxford or Fukuda ‘CFS’ misdiagnosis. Patients with M.E. need this same opportunity. Each of the patient groups involved must be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group. Dr Byron Hyde MD explains that doctors must return to the age-old medical principals of correct diagnosis (a) careful history, (b) detailed physical examination and (c) appropriate investigation.
The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the WHO classification of M.E. must be accepted and adhered to in all official documentations and government policy. There were sound medical reasons for the creation of the name in 1956, and for the classification of the illness by the WHO in 1969; neither of which has changed in the interim. Professor Malcolm Hooper explains: ‘The current ICD-10 lists ME under G.93.3 - neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination.’
People with M.E. must immediately stop being treated as if they are mentally ill. All forms of GET, and the abusive form of CBT, must be banned for all M.E. patients. It is illogical and unethical that patients be routinely subjected to treatments which have virtually zero chance of providing any benefit and such a high risk of serious and long-term harm (or death). People with M.E. must also be given access to basic medical care, financial support and other appropriate services (including funding for legitimate M.E. research) on an equal level to what is available for those with comparable illnesses (eg. multiple sclerosis).
There is no denying that the facts about Myalgic Encephalomyelitis may well be quite inconvenient to any number of doctors, politicians, media, and members of the public who have been operating under false pretences for so long with regards to this illness, with everything that that entails. But inconvenient facts or not, it is facts that they remain.
- M.E. is a distinct, recognisable entity that can be diagnosed relatively early in the course of the disease, providing the physician has some experience with the illness. The new Canadian Guidelines now also make diagnosis easier than ever before even for those with no experience with the illness. For an explanation of some of the issues of M.E. diagnosis in more detail see: Testing for Myalgic Encephalomyelitis. (In addition to the need for government funding for research into M.E. however, funding is also necessary to formulate an accurate case definition for M.E. which is not tainted by the bogus concept of ‘fatigue’ or by psychological bias and which has been produced by true M.E. experts. Again, see Testing for M.E. for a discussion of the benefits and limitations of the Canadian criteria. The medical and political overviews provided in Section 2 and Section 4 of this guide are also highly recommended).
See the full-length version of this text for more information, and for references: Smoke and Mirrors
This paper forms the introduction to a 100 page + CBT and GET database which contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients – as well as a large number of patient accounts of CBT and GET.
To access the database use the menu at the top of this page.
To print or save a copy of this text (or the entire database) in a printer-friendly Word or PDF format, see the Printer-friendly versions/Downloads section.
Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration.
For further information:
- For some excellent overviews on this topic see: Section 2 and Section 4 of the database for links to more of the best political and medical overviews of M.E. See What is M.E.? for more information on all aspects of M.E.
- Also note that: as inaccurate a description as it is, and the motivations of this name aside, the term CFS is currently classified as a synonymous term for M.E. by the WHO and a good deal of the legitimate M.E. research is published under the name CFS. Thus this term should only be able to be used when relevant to M.E. Ideally the name CFS will be abandoned entirely in the near future however (in favour of Myalgic Encephalomyelitis being used exclusively), and it is to be hoped that in the meantime that it be used only when qualified by ‘ICD’ (eg. M.E./ICD-CFS or ICD-CFS) or similar to make it clear that it is only M.E. equivalent CFS which is being discussed as per the World Health Organisation’s International Classification of Diseases (ICD) (Terms such as ‘ME/CFS,’ ‘CFS/ME’ and CFIDS which also contribute to this confusion must likewise be abandoned).
- See On the Name MEitis for more information on the evidence for inflammation of the brain and spinal cord in M.E. and other issues surrounding the name Myalgic Encephalomyelitis.
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