The effects of CBT and GET on patients with Myalgic Encephalomyelitis looks at the physical effects of CBT and GET on patients with M.E.

This page features the shorter/condensed version of this text.

No evidence exists which shows that cognitive behavioural therapy (CBT) or graded exercise therapy (GET) are appropriate, useful or safe treatments for Myalgic Encephalomyelitis (M.E. or ICD-CFS) patients. Studies 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, cancer 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:

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.

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.’ 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.’

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.’

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.’

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.’

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. 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. Exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.’

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. Surveys of M.E. patients on the effects of GET illustrate the accuracy of these findings only too well:

1. 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%.
2. 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. 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.’

• 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.

Compared to the physical devastation caused by GET, CBT would seem at first glance to be the softer option of the two interventions; 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:

1. 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 of their illness.
2. 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.

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.
• 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).

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.

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. 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.’

It is 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.’

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). 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.

For more information, and for references, see the full-length version of this text: The effects of CBT and GET on patients with Myalgic Encephalomyelitis.

See the paper Smoke and Mirrors for information on why patients with M.E. are being treated based on theories motivated by financial and political considerations as opposed to the available medical evidence. 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 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.

See What is Myalgic Encephalomyelitis? for more information on all aspects of M.E.

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