The CBT and GET Database is a stand-alone comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis (M.E.) and the bogus psychiatric or 'behavioural' paradigm of M.E. generally.
This 170 + page resource is aimed at lawyers, politicians, media, the friends and family of sufferers - but primarily at those clinicians who choose to recommend CBT and GET to their patients. It is hoped that these doctors will read something here that will forever change their minds on this subject and so benefit their patients, and themselves, as well as society in general.
TABLE OF CONTENTS:
Introduction/Overview: Features the ‘Smoke and Mirrors’ paper and includes a copy of ‘The effects of CBT and GET on patients with Myalgic Encephalomyelitis’
Recommended background reading. Includes a copy of ‘A warning on ‘CFS,’ ‘ICD-CFS’ and ‘ME/CFS’ research and advocacy’ and ‘What is M.E.?’
Research and articles 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
A summary of the available medical research
Patient accounts of CBT
Patient accounts of GET
Conclusion/Summary of key points (followed by a full reference list)
Smoke and mirrors - 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 M.E.
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 (for an as yet uncertain period of time).
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. This symptom may persist for weeks, months or years and the severity level can vary from very mild to severe. 20% of the population or more may suffer from some form of chronic fatigue.
Myalgic Encephalomyelitis is not merely a symptom, but instead a distinct disease. It has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disease with the code G93.3. 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. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
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 disease. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E.
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. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis (Hyde 1992 p. xi) (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999, [Online]) (Dowsett n.d.b, [Online]).
The symptom of chronic fatigue and the distinct neurological illness M.E. each have a very different; cause, symptoms, aetiology, pathology, 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 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 and very different 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, Multiple Sclerosis, Lupus or any number of other unrelated problems and diseases, merely because the researchers involved have decided that they would like it to?
In a scientifically enlightened age such as this, how is it possible that the results of studies using one (heterogenous) patient group can be claimed to be entirely relevant in investigating the aetiology and appropriate treatments for a completely separate and unrelated homogenous patient group? How is this scientific or logical? 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 bogusly ‘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 two unrelated patient groups so that they can fraudulently and misleadingly 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 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 (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., many M.E. sufferers are unfortunately given a ‘CFS’ misdiagnosis).
As M.E. expert Dr Byron Hyde explains:
Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears (2006, [Online]).
‘CFS’ and M.E. are anything but synonymous terms. The vast majority (an estimated 95%+) of the research and articles available today which use the term and definitions of ‘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 were the renaming and redefining of the distinct neurological disease Myalgic Encephalomyelitis allowed – indeed intended – to become so muddied? Indeed why did Myalgic Encephalomyelitis suddenly need to be renamed or redefined at all? Money. There was an enormous rise in the reported incidence of Myalgic Encephalomyelitis in the late 1970s and 1980s, alarming medical insurance companies in the US. So it was at this time that certain 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 2005a, [Online]). As Professor Malcolm Hooper explains:
In the 1980s in the US (where there is no NHS and most of the costs of health care are borne by insurance companies), the incidence of ME escalated rapidly, so 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]. Influenced by these psychiatrists, government bodies around the world have continued to propagate the same falsehoods with the result that patients are left without any hope of understanding or of health service provision or delivery. As a consequence, government funding into the biomedical aspects of the disorder is non-existent. (2003a, [Online]) (2001, [Online])
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 he created himself). He 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 2005a, [Online]).
The Wessely School and collaborators has 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 70 years. Wessely’s claims (and those of his colleagues around the world) have flooded the UK (and worldwide) literature to the extent that medical journals rarely contain any factual and unbiased information on M.E. Thus most clinicians are effectively being deprived of the opportunity to obtain even the most basic facts about the illness.
For at least a decade, serious questions have been raised 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.
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. All under the ‘anything-goes’ banner of ‘CFS’ (Mar 2004, [Online]) (Hooper 2003, [Online]) (Hooper et al. 2001, [Online]).
This is the sole reason why the charade that M.E. could be a psychiatric or behavioural ‘fatiguing’ disorder or even a ‘aberrant belief system’ 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 ‘theory’ is so financially and politicallyconvenient and profitable on such a large scale to a number of extremely powerful corporations (Hooper et al 2001, [Online]). As Dr Elizabeth Dowsett comments, these ridiculous financially motivated theories bear as much relation to legitimate science ‘as Astrology does to Astronomy’ (1999b [Online]).
Members of the ‘Wessely school’ in the UK including Wessely, Sharpe, Cleare and White, their US counterparts Reeves, Straus etc of the CDC, in Australia Lloyd, Hickie etc and the clinicians of the Nijmegen group in the Netherlands each support a bogus psychiatric or behavioural paradigm of ‘CFS’ and recommend rehabilitation-based approaches such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the most useful interventions for ‘CFS’ patients. It is important to be aware that none of these groups is studying patients with M.E. Each of these groups uses a definition of ‘CFS,’ or has created their own, which does not select those with M.E. but instead selects those with various types of psychiatric and non-psychiatric fatigue.
‘CFS’ makes getting disability payouts almost impossible, as there are no tests whatsoever that can be used to prove the existence of ‘CFS’ and because there is also so much bogus ‘information’ available about how easily and successfully ‘CFS’ can be managed or even cured. The CDC (and all other) ‘CFS’ definitions define ‘CFS’ as a psychological illness – which many health insurance policies explicitly exclude and many limit to two years’ cover. ‘CFS’ allows insurance companies and governments to evade or at least greatly limit claims all over the world. If the US has only had a universal healthcare system in place in the 1980s, and there hadn’t been obscene profit to be made by denying the existence of serious organic illnesses, this ‘CFS’ mess would never have happened.
Among his 53, largely undeclared, conflicting interests Wessely is a member of the supervisory board of a company named PRISMA. This same company 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]). Wessely is also an officer of the insurance giant UNUM.
The facts on Wessely’s colleagues are equally disturbing. Other members of the Wessely school with similar indisputable long-term commitments to the medical insurance industry are Michael Sharpe, Professor Mansel Aylward, Anthony Cleare, John Locasio and 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). LoCascio of UNUM advised the UK DWP (Welfare Office) on welfare reform while Professor Aylward was in charge of UK DWP and then director of UNUM’s research establishment at Cardiff University (Hooper 2003, [Online]) (Hooper et al. 2001, [Online]) (Williams 2007, [Online]). The list goes on. In the US in 2004 Commissioner John Garamendi described UnumProvident as ‘an outlaw company’ and also stated that, ‘It is a company that for years has operated in an illegal fashion’ (Rutherford 2007, [Online]).
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 M.E. 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]) (Hooper et al. 2001, [Online]) (Williams 2007, [Online]) (Rutherford 2007, [Online]).
This group has also driven government policy on M.E. in the UK to an overwhelming extent. Wessely is adviser to the UK government and his wife (a GP and psychiatrist) is Senior Policy Adviser to the Department of Health. Wessely was also recently reprimanded by the World Health Organisation (WHO) for attempting to subvert the ICD definition of Myalgic Encephalomyelitis due to the fact that he did not, as he claimed, have the authority to issue a WHO definition (Hooper 2003a, [Online]) (Hooper et al. 2001, [Online]) (Marshall & Williams 2005a, [Online]).
This large scale deception by insurance companies has been made possible largely because of the fact that holding some of the most powerful advisory positions in government (as some of these vested interest psychiatrists do) does not seem to be mutually exclusive with also having direct ties and allegiances to industry, even if those industries are directly affected by the decisions made by the government department/adviser in question (as the giant chemical, pharmaceutical and insurance industries are in M.E.) (Hooper 2003a, [Online]). As Professor Malcolm Hooper goes on to explain:
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. To the detriment of the sick, the deciding factor governing policies on medical research and on the management and treatment of patients is increasingly determined not by medical need but by economic considerations.
Given that what Wessely promotes is contrary to the established scientific evidence, how does he manage to maintain such power and control? Many knowledgeable people believe he maintains it by singing the desired political tune; by scientific misconduct; by manipulation of other people’s published work; by flawed methodology; by deception and by the circularity of self-references. Substantial evidence clearly reveals that in pursuit of his personal ideology or, alternatively, that of his corporate masters, Wessely abuses the scientific process. The implementation of his personal philosophy is not based on medical science and has had devastating consequences, not just for sufferers of M.E. but for their families as well.
There is a gross mismatch between the severity and complexity of M.E. and the medical and public perception of the disorder, but until Simon Wessely is held to public account, and medical professionals and public alike are informed and educated about the reality of M.E., this will continue (2003a, [Online]).
Members of the ‘Wessely school’ in the UK including Wessely, Sharpe, Cleare and White, their US counterparts Reeves, Straus etc of the CDC, in Australia Lloyd, 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 cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the most useful interventions for ‘CFS’ patients. It is important to be aware that none of these groups is studying patients with M.E. Each of these groups uses a definition of ‘CFS,’ or has created their own, which does not select those with M.E. but instead selects those with various types of psychiatric and non-psychiatric fatigue. (These inappropriate interventions are at best useless and at worst extremely harmful or fatal for M.E. patients.)
The creation of the bogus disease category ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various unrelated psychiatric fatigue states and post-viral fatigue syndromes, and other unrelated illnesses, for the benefit of various (proven) financial and political interests. The resulting ‘confusion’ between the distinct neurological disease M.E. and the man-made bogus disease category of ‘CFS’ has caused an overwhelming additional burden of suffering for those who suffer from neurological M.E. and their families. It's a big huge mess, that is for certain - but it is not an accidental mess - that is for certain too (Hyde 2006a, [Online]) (Hooper 2006, [Online]) (Hyde 2003, [Online]) (Hooper 2003a, [Online]) (Dowsett 2001a, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999b, [Online]).
To read more about the vast difference between M.E. and ‘CFS’ (and how such a small (but powerful) group of vested interest psychiatrists have come to influence the opinions of the worldwide medical community about M.E.) see: Who benefits from 'CFS' and 'ME/CFS'? and also A Brief History of Myalgic Encephalomyelitis & An Irreverent History of CFS by Dr Byron Hyde
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. These definitions select those patients most likely to be mildly ill, and those most likely to have psychological or behavioural issues causing their fatigue.
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,Wessely, Woodstock and Warfare and Unanswered Questions: do inconsistencies matter in medicine? Plus also: To set the record straight about Ean Proctor from the Isle of Man, Another Meadow? and Considerations of some issues relating to the published views of Psychiatrists of the Wessely School in relation to their beliefs about the nature, cause and treatment of myalgic encephalomyelitis (ME). 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.