Research and articles are sorted loosely by relevance and quality; thus the first two pages of articles in particular are highly recommended.

Myalgic encephalomyelitis--a persistent enteroviral infection? Dowsett EG, Ramsay AM, McCartney RA, Bell EJ. Basildon Hospital, Essex, UK. 1990

Myalgic encephalomyelitis is a common disability but frequently misinterpreted. Amongst 6,000 patients referred for general microbiological diagnosis between 1975 and 1987, 420 cases were recognized. This illness is distinguished from a variety of other post-viral states by an unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory.

MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]

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.

Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely. Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. 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.

SEVERELY AFFECTED ME (MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE (Word document)Analysis Report by 25% ME Group, 1^st March 2004

Graded exercise therapy: 95% found it unhelpful

Cognitive behavioural therapy: 93% found it unhelpful

By far the most unhelpful form of treatment was considered to be Graded Exercise Therapy (GET). This is a finding that may surprise some readers, given the current medical popularity of this approach. However, these patients’ perceptions are supported by data from previous experience: of the 39% of our members who had actually used Graded Exercise Therapy, a shocking 82% reported that their condition was made worse by this treatment. On the basis of our members’ experiences we question whether GET is an appropriate approach for patients with ME. It is worth noting that some patients were not severely affected before trying GET. Thus, it is not only people with severe ME who may be adversely affected by this form of treatment.

Comments from the Canadian Guidelines on Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) This excerpt is taken from pages 46-49 of the article "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" which appeared in the Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115, by Carruthers et al

Two hypotheses have been presented as underlying the CBT model of chronic fatigue syndrome (105). The first hypothesis "assumes that the pathophysiology of CFS is largely irreversible, but considers that a fine-tuning of the patient's understanding and coping behavior may achieve some improvement in his or her quality of life." The second hypothesis is based on the premise that the patient's impairments are learned due to wrong thinking, and "considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behavior, and emotional processes. According to this model, CBT should not only improve the quality of the patient's life, but could be potentially curative" (105).

There is much that is objectionable in the very value-laden second hypothesis, with its implied primary causal role of cognitive, behavioral and emotional processes in the genesis of ME/CFS. This hypothesis is far from being confirmed, either on the basis of research findings or from its empirical results.

Nevertheless, the assumption of its truth by some has been used to influence attitudes and decisions within the medical community and the general cultural and social milieu of ME/CFS. To ignore the demonstrated biological pathology of this illness, to disregard the patient's autonomy and experience and tell them to ignore their symptoms, all too often leads to blaming patients for their illness and withholding medical support and treatment.

Care must be taken not to classify patients experiencing chronic fatigue as ME/CFS patients unless they meet all the criteria for ME/CFS, as the outcomes for these two patient groups are substantially different.

A well informed physician empowers the patient by respecting their experiences, counsels the patients in coping strategies, and helps them achieve optimal exercise and activity levels within their limits in a common sense, non-ideological manner, which is not tied to deadlines or other hidden agenda.

[To understand more about the context of the Canadian Definition (and its specific benefits and limitations), see: A review of the 2003 ME/CFS clinical case definition ]

SOME FACTS AND FIGURES ON CBT, GET AND OTHER APPROACHES Directly from the 'Horses' Mouths: by Doris M Jones MSc.

In July 1998 the then Chief Medical Officer, Sir Kenneth Calman, announced the setting up of a Working Group on CFS/ME, to include patients, carers, patient group representatives as well as medical experts, including Psychiatrists. Over 80 people took part in this 3 year exercise, including myself. Eventually details were available on 3074 patients, and the summarized results showed very clearly that:

1. The most helpful strategies were:

a) Pacing activity with rest (2300/2568 cases = 90%)

b) Bed rest (2165/2426 cases = 89%)

c) Dietary changes (1496/2226 cases = 67%)

2. The least effective strategy was: CBT

3. The most harmful strategy was: Graded exercise

It was psychiatrists who could not accept these findings and as a group walked out, refusing to endorse or sign what was already a much ‘toned-down’ final draft report.

Surely it is time that psychiatrists took some notice and actually listened to what patients tell them. I have yet to come across a patient who complains about any treatment which works, whether this is allopathic, psychological methods (like CBT) or exercise regimes (like Graded Exercises). If it works, no-one will complain; the problem is these approaches very often don’t, and this is the one and only reason why patients are so persistent in their demands for other options and are determined to get to the real causes of their ill health. Psychiatrists have made things worse for many, in more ways than one.

CRITICAL CONSIDERATIONS by Margaret Williams, 1^st November 2004

‘The issue is whether or not compulsory exercise regimes and "rehabilitative programmes" may be harmful to those with ME / CFS. Significantly, there is now further supportive evidence that has emerged from the 7^th AACFS International Conference held in Madison, Wisconsin, from 8-10^th October 2004: "An analysis of metabolic features using MRSI (magnetic resonance spectroscopy imaging) showed elevated lactate levels, which suggests mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy".

Given this evidence, how can forced aerobic exercise be beneficial to such patients? Will the MRC trial participants be screened for such abnormalities before taking part in the aerobic exercise regimes that are the basis of the trial?

There is also evidence that many people with ME / CFS may have a serious heart problem. In April 2003, Arnold Peckerman MD from New Jersey reported findings to the annual meeting of the American Physiological Society that demonstrated via a sophisticated test that after exercise, the heart of those with ME / CFS pumped less blood than it did at rest. Peckerman is on record as saying: "Basically we are talking about heart failure. Chronic fatigue syndrome is a progressive disease". Cardiologist Joseph Miller MD from Emory University agrees that these patients have serious heart problems: "A drop in (blood pumped by the heart) during exercise is actually a marker of significant coronary artery obstruction".

What are the risks of forcing such patients to undertake aerobic exercise regimes and "push themselves back to fitness"? The ME community will recall the case of Brynmor John MP who had ME but who was advised to exercise back to fitness; he dutifully tried to do so but collapsed and died coming out of the House of Commons gym.’

Clarification about CRITICAL CONSIDERATIONS by Margaret Williams, 2^nd November 2004

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 by Dr Byron Hyde MD (an extract, PDF format)

‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality. The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine. It is my opinion that 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.’

The Complexities of Diagnosis (Word format) (PDF format) by Dr Byron Hyde MD

The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991 (Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of these four CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2001

‘Despite all this verifiable and authenticated international research, much of the current perception of ME, both medical and lay, is beset by confusion and misinformation. There are still doctors who dismiss the condition as non-existent and too many sick children are still being forcibly removed from their parents and placed in institutional care where they are forced to undergo inappropriate exercise regimes under the care of psychiatrists.

Refusal by some doctors to accept what is known about ME /ICD-CFS may raise the question of whether or not such doctors are in breach of their contract of employment if that contract requires them to keep abreast of advancing medical knowledge. Guidance issued by the General Medical Council (GMC) requires that doctors "must observe and keep up to date with the laws and statutory codes of practice which affect your work." (105) The fact that so many doctors do not keep reasonably up-to-date about ME / ICD-CFS has enormous implications for patients. (106)

Wessely leads a group of UK doctors, mostly but not exclusively psychiatrists, who have colloquially become known as the " Wessely School". Apart from those mentioned, there are other areas related to ME / ICD-CFS in which Wessely is known to have special [vested] interests, none of which he usually declares. Wessely himself has published over 200 papers mostly on his own view of CFS but his beliefs are not supported by international experts and there is stringent criticism of his papers in the peer-reviewed medical literature (see below). The whole area of terminology has become a minefield for the unwary, to the serious detriment of patients.’

[This text provides a very good overview of the historical, political and medical facts of M.E.]

Cognitive behavioural therapy for ME/CFS sufferers: How strong is the evidence? ME Research UK, The Gateway, Perth; and the Department of Medicine, University of Dundee

‘The evidence for the routine use of CBT for ME/CFS patients is sparse, and does not justify many of the claims made for this intervention. Conclusions about efficacy must be tentative given the paucity of trials; the relatively small number of patients involved; the problems inherent in comparing CBT, which included a graded exercise component in both trials, with control interventions, such as relaxation or group support; and, importantly, the potential effect of publication bias. Sir — Judith Prins and colleagues' report (1) leaves the clear impression that there is a powerful case for the provision of CBT as a specific therapy for CFS. However, careful assessment of published studies suggests that this impression is not evidence-based.’

Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment on Section 3 of The diagnosis, treatment and management of chronic fatigue syndrome (CFS)/(ME) in adults and children Work to support the NICE Guidelines October 2005. Comment by Professor Malcolm Hooper & Horace Reid, January 2006

‘There is evidence that some UK CFS researchers exhibit bias, in exaggerating the beneficial effects of their treatments. It is useful to note the way some British CFS/ME clinicians tailor their comments to cater for different audiences. When presenting their findings to a British audience, they claim "substantial" - almost curative - benefits. However in the American forum the same individuals will say that the benefits are only "modest", and "not a panacea".

• Wessely in the UK. "substantial improvements in measures of fatigue and physical functioning."²⁵
• Wessely in the USA. "modestly effective"; "neither approach is remotely curative"; "not the answer to CFS".²⁶
• Sharpe in the UK. "the overall treatment effect was substantial"; "a return to normal functioning (albeit often with continuing fatigue) is possible in most cases".²⁷
• Sharpe in the USA. "CBT is not a panacea" ²⁸

In America they face more robust peer review from heavyweight rivals, and are more circumspect in their claims. A number of leading US researchers are sceptical of their claimed results, in any case. Key Message: UK research on CBT & GET may suffer from bias. NICE should not take it findings at face value.’

The Mental Health Movement: Persecution of Patients?

by Professor Malcolm Hooper, 2003

Full title: A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE "WESSELY SCHOOL" IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK

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.

In the UK, patients with myalgic encephalomyelitis (ME, also known as Chronic Fatigue Syndrome or CFS), particularly children, have suffered gross and barbaric abuse and persistent denigration as a consequence of the beliefs of certain psychiatrists who are attempting to control the national agenda for this complex and severe neuro-immunological disorder.

These psychiatrists are shown to be clearly in breach of the first tenet of medicine --- first do no harm--- in that by their words and deeds they have wreaked havoc in the lives of ME/ICD-CFS patients and their families by their arrogant pursuit of a psychiatric construct of the disorder which ignores the abundant clinical and scientific evidence (widely presented in the international medical and scientific literature) of the organic nature of ME/ICD-CFS

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. As a consequence, Government funding into the biomedical aspects of the disorder is non-existent

This coterie of psychiatrists has proven affiliations with corporate industry and has insidiously infiltrated all the major institutions, directing funding for research into an exclusively psychiatric model of the disorder, focusing on "management strategies" involving psychiatric techniques, even though such techniques have been shown to be at best of no lasting value and at worst to be harmful to patients with ME/ICD-CFS.

Mobility problems in ME by Dr Elizabeth Dowsett

The symptoms of this multi system disease are characterised by post encephalitic damage to the brain stem ⁽¹⁾ (which contains major nerve centres controlling bodily homeostais) and through which many spinal nerve tracts connect with higher centres in the brain. Some individuals have, in addition, damage to skeletal and heart muscle. SPECIFIC MOBILITY PROBLEMS INCLUDE THE FOLLOWING:

NEUROLOGICAL PROBLEMS.

1. Exhaustion, weakness and collapse following mental or physical exertion beyond the patents’ capacity. This arises from metabolic damage. Whereas in healthy controls or in other illnesses (such as depression) there is an increased metabolic response to exertion, in ME this is diminished, leading to sudden collapse which requires several days or more for recovery. These complications (following even trivial exercise) are not recognised in short medical examinations for social benefits and no allowance is made for the delayed effects of exertion.
2. Recent research indicates that these patients have high resting energy requirements which further diminish their resources.
3. Problems with balance are common in ME due to involvement of spinal nerve tracts in the damaged brain stem.

MUSCULO-SKELETAL PROBLEMS

1. Over 70% of ME patients suffer from significant bone and muscle pain (due to disordered sensory perception – a further consequence of brain stem damage which seriously affects their mobility).
2. Other patients have (in addition) metabolic damage to muscle fibres resulting in abnormal early lactic acidosis as demonstrated by sub anaerobic exercise tests.
3. 30% of patients with abnormal exercise tests have evidence of persistent infection in the muscle and of muscle infarcts (tender points on pressure affecting mainly limb and trunk muscles) and of jitter (due to incoordinated muscle fibre action) on slow leg raising for example, following damage to the neuromuscular junction. A rapid decline in thigh muscle tone can be demonstrated between 2 and 24 hours after exercise ^(3.)

CARDIOVASCULAR PROBLEMS

Politically-modified Research Eileen Marshall and Margaret WIlliams, 26th June 2005

‘If only someone with sufficient influence would question where "Wessely School" psychiatrists get their opinions from. If this were to happen, then the rampant metastatic spread of their unproven beliefs would soon stop because their opinions are not -- and cannot be -- based on biomedical evidence. But then, "policy-based evidence" is not required to be based on biomedical evidence and that, of course, is its value to Government.’

Profits Before Patients? Eileen Marshall and Margaret Williams, 15^th April 2005

The role of the Medical Research Council (MRC) is to fund projects on the basis of expertly written, peer-reviewed and approved proposals. Clearly, therefore, the role of peer-reviewers is of paramount importance as it is they who influence what research the MRC will fund. In the case of ME/ICD-CFS there are a limited number of peer-reviewers of psychiatric interventions of cognitive behavioural therapy and graded exercise apart from the PACE trial proponents themselves, so the favourable recommendation of the carefully selected peer-reviewers was not unexpected, nor was the decision to fund the trials on "CFS/ME" patients. The PACE trials involve compulsory aerobic exercise even though the deleterious effects of such exercise on those with ME/ICD-CFS are well documented in the medical literature.

Considering the rapidly increasing weight of available published data on organic pathology in ME/ICD-CFS (little of which is published in the UK medical literature), the MRC will inevitably have its hand forced eventually, as the time will come when such evidence can no longer continue to be ignored, but currently this seems to remain a forlorn hope. Surely this is a short-sighted policy, because it is well recognised that those who are correctly diagnosed and permitted to rest adequately in the initial stages are the ones who have hope of some recovery; moreover, if relevant research were to be instituted, it would lead to patients being investigated competently and treated correctly, thus offering the prospect of ME/ICD-CFS patients being able to return to an economically productive life.

Question marks over evidential basis of claims for psychosocial therapies ME Research UK, The Gateway, Perth; and the Department of Medicine, University of Dundee

‘Methods and Results: In response to an article in the British Medical Journal, we reviewed trials of the use of psychosocial therapies in ME/CFS. The total number of available trials is small, numbers are relatively low (6/8 trials have n<40 in the active groups), and 2 of the 5 cognitive behavioural therapy (CBT) trials do not show an overall significant effect. No trial contains a "control" intervention adequate to determine specific "efficacy": in only 2 trials are the treatment arms compared with an "active", though not indistinguishable, intervention. A number of non-specific effects could have accounted for the positive results, and the fact that the drop-out rate in the active arm of one of the trials was 40% may point in this direction, as discussed in one of the reviews. Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence, and professional doubts about the evidence base for some behavioural therapies themselves give grounds for caution.

Abbot NC, Newton DJ
Letter to the British Medical Journal 2002

Sharpe and Wilks' review [1] contains an "evidence-based summary" with the statement, "graded exercise and cognitive behavioural therapies are effective in treating chronic fatigue syndrome". However, rigorous examination of the literature indicates that this remark is not itself evidence-based, a serious criticism since evidence-based summaries in the BMJ carry weight and are widely quoted.

Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence [4], and professional doubts about the evidence base for some behavioural therapies themselves [5] give grounds for caution. Indeed, if a similar evidence base existed for, say, Shamanic healing - which has no professional proponents - it would arouse little clinical interest.

Neither of the review groups has commended GET or CBT as particularly effective for chronic fatigue syndrome patients. Whiting et al. [2] state, "all conclusions about effectiveness should be considered together with the methodological inadequacies of the studies."

Physiological responses to incremental exercise in patients with chronic fatigue syndrome. Inbar O, Dlin R, Rotstein A, Whipp BJ.

‘As a group, the CFS patients demonstrated significantly lower cardiovascular as well as ventilatory values at peak exercise, compared with the control group.’ ‘These results could indicate either cardiac or peripheral insufficiency embedded in the pathology of CFS patients.’ ‘We conclude that indexes from cardiopulmonary exercise testing may be used as objective discriminatory indicators for evaluation of patients.’

House of Lords Debate Thursday, 22 January 2004

The Countess of Mar rose to ask Her Majesty's Government whether they subscribe to the World Health Organisation international classification of diseases for myalgic encephalomyelitis (ME) under ICD 10.G93.3-neurological disorders. ‘Since 1992, one of the terms listed in the ICD as an alternative for ME is chronic fatigue syndrome. It is that term that is now used by international researchers and which has given rise to the confusing terms of ME/CFS and CFS/ME, a confusion that has served well the aims of a group of psychiatrists who assert that, whatever term is used, ME/CFS is simply medically unexplained chronic fatigue and that it should be classified as a mental disorder over which they should exert control.

Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder, for which he claims to have developed a more intensive form of the psychiatric intervention known as cognitive behaviour therapy (CBT). That consists of using intensive, mind-altering techniques to convince patients that they do not suffer from a physical illness. It also includes forced regimes of graded exercise to be supervised by a Wessely school-trained psychotherapist aimed at getting patients back to fitness.

Wessely school psychiatrists are about to receive £11.1 million, including £2.6 million from the Medical Research Council, in an attempt to strengthen the weak evidence that his regime actually works for those with ME. Among his largely undeclared, interests it should be noted that he is a member of the supervisory board of a company, PRISMA, that is supplying such rehabilitation programmes as CBT to the NHS for those with ME, even though such regimes have been widely shown, at their best, to be of limited and short-lasting benefit and, more importantly, at their worst, to be actively harmful to those with the disorder.

Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise. Jammes Y, Steinberg JG, Mambrini O, Bregeon F, Delliaux S

‘The response of CFS patients to incremental exercise associates a lengthened and accentuated oxidative stress together with marked alterations of the muscle membrane excitability. These two objective signs of muscle dysfunction are sufficient to explain muscle pain and postexertional malaise reported by our patients.’

CONCERNS ABOUT A COMMERCIAL CONFLICT OF INTEREST UNDERLYING THE DWP HANDBOOK ENTRY ON MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME

(THE GIBSON PARLIAMENTARY INQUIRY) Professor Malcolm Hooper, Eileen Marshall and Margaret Williams, December 2005