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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 does the available research actually support these claims? The answer, many will be surprised to know, is an unequivocal ‘not by a long shot.’ 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.
But how is this relevant to M.E. patients unless the symptom of chronic fatigue and the neurological illness known since 1956 as Myalgic Encephalomyelitis are exactly the same thing?
What is chronic fatigue, and what is Myalgic Encephalomyelitis?
Chronic fatigue is a symptom of many different illnesses and has a large number of different and unrelated causes. People with chronic fatigue may be fatigued because of vitamin deficiency, sleep disorder, depression, cancer, burn-out, Multiple Sclerosis, and a large number of other psychiatric and miscellaneous non-psychiatric illnesses. Up to 20% of the population may suffer from some form of chronic fatigue.
Myalgic Encephalomyelitis in contrast is not merely a symptom but is instead an illness which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder.
Myalgic encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by damage to the brain stem (a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis. M.E. is primarily neurological, but symptoms may 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. M.E. is not defined by fatigue thus 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. M.E. can be extremely disabling and in some cases the illness is fatal. (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online]) 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 – and World Health Organization classification. Clearly it is a stretch of credibility to say that people with the symptom of chronic fatigue and those with M.E. share any real similarities – let alone that they could somehow represent the exact same patient group and be able to be studied interchangeably.
(Note too that each of the core features of M.E. (unlike ‘fatigue’ which is unmeasurable) may be clearly measured and verified using a series of objective tests, see: Testing for M.E. and What is M.E.? for more information.)
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. The studies which support these theories and the use of these therapies have been conducted not on people with M.E. but instead on patients with an entirely unrelated health problem – the symptom of fatigue.
Does this mean that research conducted using patients with diabetes (for example) can now also be applied to all those who have cancer, nut allergies, broken legs or any number of other unrelated problems; merely because the researchers involved have decided that they would like it to?
In a scientifically enlightened age such as this, how is it acceptable that the results of studies using one patient group can be used to investigate the aetiology and appropriate treatments for a completely separate and unrelated patient group? How is this scientific? How is this ethical?
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 more correctly; how it has been 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 CFS and the CFS case definition was 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 (Hooper et al. 2001 [Online]).
Nearly 20 years later there are now more than 9 different CFS definitions. In the two most commonly used definitions – the US 1994 Fukada (or CDC) definition and the 1991 UK Oxford definition – the only essential symptom required for the diagnosis of CFS to be made is ‘chronic fatigue.’ Both of these definitions are designed to expressly include those with somatisation disorders (or other non-major psychological or psychiatric disease) as patients who have physical signs of illness (as is the case with every M.E. patient) are specifically excluded from the diagnosis. By definition patients with neurological disease, including M.E., have been excluded from study using these criteria. Neither of these definitions (nor any of the CFS definitions) defines a neurological condition and indeed they are each far too vague to define any single and distinct 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. (Hooper a. [Online])
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 (each of which feature fatigue as well as a number of other common symptoms; poor sleep, headaches, muscle pain etc.) including Lyme disease, multiple sclerosis, Fibromyalgia, athletes over-training syndrome, depression, burnout, systemic fungal infections (candida) and even various cancers 4. Myalgic Encephalomyelitis (despite the fact none of the CFS definitions describes M.E., most M.E. sufferers are given a CFS diagnosis by default).
Despite the fact that it was an outbreak of M.E. which these CFS definitions were created to define and the fact that the World Health Organization has classified both M.E. and CFS as synonymous terms for a distinct organic neurological disorder; 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.
So why were a group of psychiatrists allowed to redefine a disease of infectious origin? Why was the renaming and redefining of Myalgic Encephalomyelitis allowed - or indeed designed - to become so outrageously skewed? 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 (Marshall & Williams 2005, [Online]). As M.E. advocate 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]. (2001, [Online])
For example, the psychiatrist Simon Wessely – arguably the most powerful and prolific author of papers which claim that M.E. is merely a psychological problem of ‘fatigue’ – began his rise to prominence in the UK at the same time the first CFS definition was being created in the USA (1988). Wessely, and his like-minded colleagues – a small group made up mostly but not exclusively of psychiatrists (colloquially known as the ‘Wessely School’) has gained dominance in the field of M.E. in the UK (and increasingly around the world) by producing vast numbers of papers which purport to be about M.E.
Wessely claims to specialise in M.E. but uses the term interchangeably with chronic fatigue, fatigue or tiredness plus terms such as neurasthenia, CFS and ‘CFS/ME’ (a confusing and misleading term they created themselves) and claims that psychiatric states of ongoing fatigue and the distinct neurological disorder M.E. are synonymous. Despite all the existing contradictory evidence, Wessely (and members of the Wessely School) assert that M.E. is a behavioural disorder (with no physical signs of illness or abnormalities on testing) that is perpetuated by "aberrant illness beliefs" and by "the misattribution of normal bodily sensations" and that patients "seek and obtain secondary gain by adopting the sick role." (Hooper & Marshall 2005, [Online])
This group have assiduously attempted to obliterate recorded medical history of Myalgic Encephalomyelitis; even though the existing evidence and studies were published in prestigious peer-reviewed journals and span over 60 years. Wessely’s (and his colleagues around the world) claims have flooded the UK (and worldwide) literature to the extent that medical journals rarely contain any factual and unbiased information on M.E. and so most clinicians are effectively being deprived of the opportunity to obtain even the most basic facts about the illness. This group have also driven government policy on M.E. in the UK. Wessely is adviser to the UK government and his wife (a GP and psychiatrist) is Senior Policy Adviser to the Department of Health.
For at least a decade, serious questions have been raised (and published) in international medical journals about possible scientific misconduct and flawed methodology in the work of Wessely and his colleagues. It is only relatively recently however that his long-term involvement as medical adviser – and board member – to a number of commercial bodies having a vested interest in how M.E. is managed have been exposed.
Chief among these special interests is Wessely’s role with the insurance giant UNUM. Other ‘CFS’ experts of the Wessely school with similar indisputable long-term commitments to the medical insurance industry are Michael Sharpe, Anthony Cleare and psychistrist Peter White – Wessely’s closest colleagues. Peter White is one of the chief medical officers for insurance company Swiss Re and their other "CFS experts" are Michael Sharpe and Simon Wessely, and they also use psychiatrist Anthony Cleare (a frequent co-author with Wessely). Other insurers involved include: Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life and Permanent Insurance, and as Re-insurers, the massive Swiss Re. The goal of these groups has clearly been to prevent insurance cover for ME patients (those with a psychiatric label are denied medical insurance cover); to prevent disability payments to them and to prevent successful liability lawsuits and maintain the supremacy of their industries. (Hooper 2003, [Online]) (In terms of insurance costs, M.E. came second in the list of the five most expensive conditions, being three places above AIDS therefore many millions are at stake for these groups.) (Hooper et al. 2001, [Online])
Among his 53, largely undeclared conflicting interests Wessely is also a member of the supervisory board of a company named PRISMA. The same company that is being paid many millions of pounds to supply ‘rehabilitation’ programs (such as CBT and GET) to the NHS for use on ‘CFS’ patients. (Mar 2004, [Online])
The government funded research produced by this group continues to be rigorously criticised on the grounds that it is methodologically flawed and biased and that it relies on a highly selective and misrepresentative choice of references, and too often cites their own studies as the sole or primary references. Despite this, and the fact that this coterie of psychiatrists has a number of outrageous conflicts of interest and proven affiliations with corporate industry they have managed to assiduously infiltrate all the major institutions – including government – directing funding for M.E. research into an exclusively psychiatric model of the illness (and which involves studying ‘fatigue’ sufferers instead of those with M.E.) (Mar 2004, [Online]) (Hooper 2003, [Online]) (Hooper et al. 2001, [Online])
Professor Malcolm Hooper explains: 'Increasingly, it is now "policy-makers" and Government advisers, not experienced clinicians, who determine how a disorder is classified and managed in the NHS: the determination of an illness classification and the provision of policy-driven "management" is a very profitable business.’ (2003, [Online])
This is the reason why the charade that M.E. could be a psychiatric or behavioural disorder or even a ‘aberrant belief system’ exists; 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 purely 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 (Hooper et al 2001, [Online]).
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. Each of these groups has created their own definition of ‘CFS’ (or uses one) which does not select those with M.E. but instead selects various types of fatigue sufferers.
For more information on Wessely (etc) and more detail on the corporations involved see: What is ME? What is CFS? Information for Clinicians & Lawyers, The Mental Health Movement: Persecution of Patients, Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base, Politically-modified Research and Unanswered Questions: do inconsistencies matter in medicine? See also many more articles on this topic – and on the politics of ‘CFS’ in the US at the CDC and in Australia – in Section 3 of this guide.
Note that while the unmodified Fukuda or CDC criteria is commonly used for research worldwide the only definitions used in studies which have shown beneficial effects from CBT and GET are those which select patients solely on the presence of the symptom of fatigue ie. Oxford criteria or modified Fukuda criteria.
Despite the misleading claims to the contrary made by these vested interest groups, no evidence exists which shows that cognitive behavioural therapy (CBT) or graded exercise therapy (GET) are appropriate, useful or safe treatments for Myalgic Encephalomyelitis patients. Studies by these groups (and others) involving miscellaneous psychiatric and non-psychiatric ‘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 even trivial levels of activity or exercise. Exercise or exertion intolerance is one of the many things which separates Myalgic Encephalomyelitis so distinctly from various post-viral fatigue states or other illnesses involving 'chronic fatigue.’ People with M.E. do not improve with exercise. They cannot; exercise intolerance is a large and essential part of what M.E. is. Veteran 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.’ (1986, [Online]).
This essential feature of M.E. is characterised by a unique form of paralytic muscle weakness whereby muscles perform normally to begin with but after even a minor degree of physical effort; three, four or five days, or longer, elapse before full muscle power is restored. This affects all muscles including the heart and is very different from mere ‘fatigue.’ (Ramsay 1986, [Online]) (Hyde 2003, [Online]) (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online])
Doctors who have experience with M.E. (and can tell the difference between authentic M.E. and various unrelated fatigue states) and the leading M.E. experts all concur; exercise can have many harmful effects on patients both in the short- and long-term. 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;
a. 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.’ (Ramsay 1986, [Online])
b. 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. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion’ and ‘Prompt recognition and advice to avoid over-exertion is mandatory.’ (Dowsett & Ramsay et al. 1990) (Dowsett 2000, [Online]) (Dowsett a, [Online])
c. 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.’ (Hyde 2003, [Online])
d. 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 and with scientific precision. (Marshall & Williams 2005, [Online].) Findings which showed mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy also led Dr Cheney to comment, ‘The most important thing about exercise is not to have [patients with ME] do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.’ (Williams 2004, [Online]).
As these comments show, the adverse response to physical activity in M.E. patients is not ‘medically unexplained.’ It is also worth noting that none of these abnormalities can be explained by ‘deconditioning’ – the supposed reason for the recommendation of therapies such as GET. (MESA [Online])
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% (Jones 1998, [Online].)
- 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 a shocking 82% reported that it had made their condition worse. A significant number of those surveyed indicated that they were not severely affected before GET. (25% M.E. Group 2004, [Online]) Thus GET should not be considered safe for M.E. sufferers of any severity.
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.
- 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.)
- To read more articles, research and books by these authors (and others) which explain these abnormalities in more detail see: Articles sorted by Author and Myalgic Encephalomyelitis Research and Articles.
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 (or formal GET programs) 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. As Dr. Elizabeth Dowsett, explains; ‘20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.’ Dr Dowsett has estimated the death rate of M.E. to be 3% . (This figure however also includes other causes of death including organ failure, another common cause of death in M.E. patients). (2000, [Online]) (2001, [Online]).
It is vital that M.E. patients avoid physical over-exertion and are never encouraged to be active beyond their individual limits particularly in the early and acute stages of the illness, but also at any stage of the illness as this can greatly damage a patient’s chances for future improvement or recovery. Graded exercise cannot improve authentic M.E.; disabled patients who improve with exercise do not qualify for a diagnosis of authentic M.E. (Ramsay 1986, [Online]) (Hyde 2003, [Online]) (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online])
- 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.
What is the effect of cognitive behavioural therapy (CBT) on Myalgic Encephalomyelitis (M.E.) patients?
Compared to the physical devastation caused by GET, CBT would seem at first glance to be the softer option of the two; but this is not always the case. 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 the limitations caused by their illness. (Carruthers et al. 2003, [Online])
- 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. (Carruthers et al. 2003, [Online])
Surveys of M.E. patients on the effects of cognitive behavioural therapy found:
- The (aforementioned) 1998 survey of over 3000 UK M.E. patients found that CBT was the least effective treatment covered in the questionnaire. Of those who had tried CBT, 55% indicated that the treatment had made no difference while 22% indicated that they had been made worse by CBT. (Jones 1998, [Online])
- The (aforementioned) 2004 survey of severely affected M.E. sufferers also found that cognitive behavioural therapy was one of the most unhelpful treatments for M.E. Fully 93% of those who had tried CBT said that it was unhelpful (the only treatment with a worse rating was GET). (25% M.E. Group 2004, [Online])
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 in this way thus CBT can NOT be considered safe for all M.E. sufferers. (Carruthers et al. 2003, [Online])
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. (Carruthers et al. 2003, [Online])
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. M.E. expert Dr. Elizabeth Dowsett explains about CBT: ‘Whereas any regime which can encourage patients with depression to discard or distract their damaging unrealistic morbid thoughts is helpful, patients with ME are usually capable of greater insight and understanding about their illness. Unfortunately, ME sufferers are too often denied care in our society, so it is essential that they should remain as well informed as possible about treatment options and not ‘brainwashed’ into disbelieving their own symptoms.’ (b [Online])
It is undoubtedly children with M.E. and their families who pay the highest price where CBT is involved however. Children with M.E. are not exempt from such interventions and this is often far more detrimental to children as compared to adults. As M.E. authors Verillo and Gellman explain: ‘To throw disbelief in the face of a child who not only has all the symptoms of [M.E.] but is terribly frightened and in profound need of reassurance is not only cruel, it is detrimental to the child's future emotional growth.’ (Verillo & Gellman 1997 p. 327)
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 (false accusations of Munchausens by proxy). Some parents have lost custody and their children have been placed in foster care. Children have also been forcibly removed from the home and forced to undergo CBT and GET (and worse). All of this while the child continues to be seriously physically ill and not receive any sort of appropriate medical care.
This abusive form of CBT can undoubtedly cause significant psychological harm, but it is these additional associated burdens; physical relapse, the withholding of basic medical care, the removal of children from their parents and parents being falsely charged with making their children ill themselves (etc.) which combine to make this form of CBT so harmful. Thus the negative effects of CBT can sometimes be equally as devastating as those of GET, or in some cases, worse (for sufferers and their families).
Clearly, CBT and GET are at best useless and at worst extremely harmful for M.E. patients
Despite this, people with M.E. are routinely being recommended these treatments while also being assured that they are completely safe.
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. (Or against the will of the parents of children with M.E., as described previously). In some cases it is a condition of receiving medical insurance entitlements that M.E. patients first undergo ‘rehabilitation’ such as CBT and GET programs. This is also true of government welfare entitlements as Professor Malcolm Hooper explains:
[In the UK] many patients are simply too sick to be forced to attend psychiatric units and to participate in compulsory "management strategies" which involve exercising, but if they fail to attend, they are deemed not to want to get better and their State benefits are withdrawn because of Wessely’s dogmatic advice to Government that ME is nothing more than an "aberrant illness belief". There are many such known cases, including those in which ME patients have been threatened with being sectioned (ie. compulsorily detained under the Mental Health Act) unless they comply with psychotherapy. (2003, [Online])
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. Of the 25% of patients who are severely affected by the illness (and are bed-bound and housebound) around half have no contact with the health service at all as they are seldom able to obtain housecalls, for example. (Dunn 2005, [Online]). Thus a significant percentage of very physically ill and vulnerable M.E. patients are simply left to suffer and die at home without any medical care or support. (Hooper 2003, [Online])
In conclusion
Despite popular opinion, there is no legitimate scientifically motivated debate about whether or not M.E. is a ‘real’ illness or not, or whether or not it is ‘behavioural’ or has a biological basis.
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, lack of motivation, long-term stress, acute stress, abuse in childhood, a genetic inability to deal with normal levels of stress, inadequate coping strategies 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.’ They are pure fiction. Strong evidence of the biological basis for the illness has existed since the 1930’s and 1950’s and more than 1000 good articles now support the basic premises of M.E. as a debilitating organic neurological illness. Thus this is not simply theory, but is based upon an enormous body of clinical information. Confirmation of this hypothesis is supported by electrical tests of muscle and of brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays. Newer scientific evidence is increasingly strengthening this hypothesis. (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online]) M.E. is not ‘medically unexplained’ (or ‘unexplainable’) and many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles. These are well-documented, scientifically sound explanations for why patients are often bedridden and unable to maintain an upright posture (MESA 2005 [Online]).
The reality is that anyone, whether medically qualified or not, who looks at the worldwide published medical evidence on M.E. could not fail to recognise that the psychological or psychiatric theories could not possibly explain the many different and profound physical abnormalities seen in M.E. (nor the many other characteristics of the disease which are not consistent with psychological or behavioural illness). There are only two ways that a person could reach a different conclusion:
- Bias due to vested political or financial (or other) interests
- Lack of access to a truly representative selection of the evidence (ie. an individual has only availed themselves of the pseudo-science provided by financial stakeholders and not a representative selection (or indeed any) of the legitimate and unbiased science.)
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 major symptom to be misdiagnosed as having ‘CFS.’ These may be patients with a large number of varying conditions (as described previously). Patients ’diagnosed’ with Fukuda or CDC CFS (or any other CFS definition) may have any one of a number of different illnesses. It is vitally important that each of these patients discovers their true diagnosis so that they may finally receive appropriate treatment and support. Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery and this process must begin with a correct diagnosis if at all possible; a correct diagnosis is half the battle won. 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. As one M.E. advocate explained recently: ‘So many abnormalities have now been shown to occur regularly in cases of authentic ME that it is not only bad science to attempt to dismiss, ignore or deny a reality that can be scientifically measured, but to continue to do so must, as others have noted, border on the criminal. (Marshall & Williams 2006, [Online]) This is particularly relevant to those doctors which recommend CBT or GET to their patients. Whether they are aware of it or not, these doctors 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.
So where do we go from here? Sub-grouping different types of ’CFS’ would achieve very little and only create yet more confusion (which the corporations involved would no doubt continue to take advantage of, to the continued detriment of patients). 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. (Some of the conditions commonly misdiagnosed as ‘CFS’ are very well defined and well-known illnesses and very treatable – but ONLY once they have been correctly diagnosed). 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. (2006, [Online])
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 term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. The currently version 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. (Hooper 2006, [online])
People with M.E. must immediately stop being treated as if they are mentally ill, or suffer with a behavioural illness, or as if their physical symptoms do not exist or can be improved with ‘positive thinking’ and exercise (or mixed in with various ‘fatigue’ sufferers in any way). All forms of GET, and the abusive and unscientific form of CBT, must be banned for all M.E. patients. It is illogical and unethical (and a gross violation of basic human rights) 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 or Lupus).
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.
- This misdiagnosis of ‘CFS’ and lack of appropriate medical treatment can have many negative effects on this heterogeneous group of patients. For example, there have been cases where cancer sufferers suffering severe fatigue (as is common in cancer) have been misdiagnosed as ‘CFS’ and subsequently died due to lack of treatment. Dr Byron Hyde’s paper The Complexities of Diagnosis (PDF) mentions several such cases (as well as many other issues and case studies of CFS misdiagnosis).
- How is the public affected by the denials and propaganda surrounding M.E.? In a number of ways, for example, see What is M.E.? for information on how the government’s pretence of ignorance has impacted on the transmission of M.E.
- 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 listed below are also recommended).
- 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.
This text forms the introduction to a 100 page + CBT and GET database.
The database 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. A shorter/condensed version of this text is also available, see: Smoke and Mirrors – Condensed.
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:
- See What is M.E.? for more information on all aspects of M.E.
- To read a text which deals solely with the medical issues surrounding CBT and GET on M.E. patients see: The effects of CBT and GET on patients with Myalgic Encephalomyelitis
- For some excellent overviews on this topic see: A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome, The Complexities of Diagnosis (PDF) as well as Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research, What is ME? What is CFS? Information for Clinicians & Lawyers and ME and CFS, the Definitions, Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! and Redefinitions of ME - a 20th Century Phenomenon, A review of the 2003 clinical case definition. Many more articles on all aspects of M.E. are available in the Myalgic Encephalomyelitis Research and Articles. See also Section 2:, Section 3: and Section 4: of the database for links to more of the best political and medical overviews 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).
References (and additional recommended reading list)
- Carruthers, Bruce M. Dr. et al 2003 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Haworth Medical Press, New York
- Dowsett, Elizabeth MBChB. 2001, THE LATE EFFECTS OF ME Can they be distinguished from the Post-polio syndrome? [Online], Available: http://www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html
- Dowsett, Elizabeth MBChB. 2000, Mobility problems in ME [Online], Available: http://www.25megroup.org/Information/Medical/dowsett's/mobility%20problems.htm
- Dowsett, Elizabeth MBChB. 1999 (a), Redefinitions of ME [Online], Available: http://www.25megroup.org/Information/Medical/dowsett’s/Redefinitions%20of%20ME.htm
- Dowsett, Elizabeth MBChB. 1999 (b) Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE!, [Online], Available: http://www.25megroup.org/Information/Medical/dowsett's/Research%20into%20ME.CFS%201988-98.htm
- Dowsett, Elizabeth MBChB. Undated (a), Time to put the exercise cure to rest, [Online], Available: http://25megroup.org/Information/Medical/dowsett’s/exercise%20cure%20to%20rest.htm
- Dowsett, Elizabeth MBChB. Undated (b), Differences between ME and CFS, [Online], Available: http://25megroup.org/Information/Medical/dowsett’s/me%20and%20cfs.htm
- Dowsett, Elizabeth MBChB. Undated (c), Is stress more than a modern buzzword? [Online], Available: www.25megroup.org/Information/Medical/dowsett's/Is%20stress%20more%20than%20a%20modern%20buzz%20word.htm
- Dowsett EG, Ramsay AM, McCartney RA, Bell EJ. 1990 Myalgic encephalomyelitis--a persistent enteroviral infection? Basildon Hospital, Essex, UK.
- Dunn, Linda (in consultation with the Cross Party Group on ME) 2005, Myalgic Encephalomyelitis. The impact on sufferers: is health policy in Scotland on the right path? [Online], Available: http://www.meactionuk.org.uk/Briefing_paper_to_Scottish_MSPs_20_03_2005.htm
- Hooper, M 2006, Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research J. Clin. Pathol. published online 25 Aug 2006; doi:10.1136/jcp.2006.042408 Available: http://jcp.bmjjournals.com/cgi/content/abstract/jcp.2006.042408v1 The PDF is also available at: http://www.ahummingbirdsguide.com/Other/ME_A_Review_by_Hooper.pdf
- Hooper, M. & Marshall E.P. 2005, Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome [Online], Available: http://www.ahummingbirdsguide.com/wmarwillhoopgibsonenqui.htm
- Hooper, M. 2003 The MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS? [Online], Available: http://www.satori-5.co.uk/word_articles/me_cfs/prof_hooper_3.html
- Hooper, M. Undated (a) The Terminology of ME and CFS [Online], Available: http://www.satori-5.co.uk/word_articles/me_cfs/terminology_of_me.html
- Hooper, M. Marshall E.P. & Williams, M. 2001, What is ME? What is CFS? Information for Clinicians and Lawyers, [Online], Available: http://www.ahummingbirdsguide.com/wmarwillhoopwimewicfs.htm
- Hyde, Byron M.D. 2006, A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome [Online], Available: www.ahummingbirdsguide.com/whyde.htm
- Hyde, Byron M.D. 2003, The Complexities of Diagnosis in (ed) Jason, Leonard at et al. 2003 Handbook of Chronic Fatigue Syndrome by Ross Wiley and Sons, USA
- Hyde, Byron M.D. 1992, Preface in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Nightingale Research Foundation, Ottawa
- Hyde, Byron M.D., Bastien, Sheila M.D. & Anil Jain M.D. 1992, General Information: Post Infectious, Acute Onset M.E./CFS in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Nightingale Research Foundation, Ottawa
- Hyde, Byron M.D. & Anil Jain M.D. 1992, Clinical Observations of Central Nervous System Dysfunction in Post Infectious, Acute Onset M.E./CFS in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Nightingale Research Foundation, Ottawa
- Johnson, Hillary 1996, Osler’s Web, Crown Publishers, New York
- Jones, Doris M. MSc. 1998, SOME FACTS AND FIGURES ON CBT, GET AND OTHER APPROACHES Directly from the 'Horses' Mouths [Online]. Available: (link in title)
- Mar, Countess of. 2004, House of Lords Debate [Online], Available: (link in title)
- Marshall, Eileen & Williams, Margaret. 2006, M.E. Exists: True or False? [Online], Available: http://www.ahummingbirdsguide.com/wmarwillmeexists.htm
- Marshall, Eileen & Williams, Margaret. 2005, Profits before Patients? [Online], Available: http://www.ahummingbirdsguide.com/wmarwillpbp.htm
- Marshall, Eileen & Williams, Margaret. 2005.a Problems and solutions? [Online], Available: http://www.ahummingbirdsguide.com/wmarwillpas.htm
- Ramsay, Melvin A. 1986 MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. [Online], Available: http://www.meactionuk.org.uk/ramsey.html
- The ME Society of America website, [Online], Available: http://www.cfids-cab.org/MESA/framework.html
- The 25% M.E. Group. 2004, SEVERELY AFFECTED ME (MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE [Online]. Available: (link in title)
- Verillo, Erica F & Gellman, Lauren M 1997, Chronic Fatigue Syndrome - A Treatment Guide, St. Martin's Griffin, New York
- Williams, Margaret. Critical considerations 2004, [Online], Available: http://www.ahummingbirdsguide.com/wmarwillcc.htm
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