The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

The CBT and GET database

  • Section 1: Introduction/Overview: Smoke and Mirrors
  • Section 2: Recommended background reading
  • Section 3: Research and articles which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the scientifically unsupportable 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients
  • Section 4: A summary of the available medical research
  • Section 5: Patient accounts of CBT
  • Section 6: Patient accounts of GET
  • Section 7: Conclusion/Summary of key points (Includes Printer-friendly versions/Downloads, Acknowledgments and Future submissions sections)

Section 3

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.

 

Before reading this research/advocacy information, please be aware of the following facts:
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting Research and Articles on Myalgic Encephalomyelitis into Context.

Section 3: part 1

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, 1st 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 limitations), see: A review of the 2003 ME/CFS clinical case definition  Note that this is  not a M.E. definition, but a mix of facts relating to M.E. and ‘CFS’ unfortunately.]


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, 1st 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 7th AACFS International Conference held in Madison, Wisconsin, from 8-10th 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.

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, 2nd 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

‘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 by 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.



New Labour, the market state, and the end of welfare by Jonathan Rutherford: Jonathan Rutherford looks at the connections between government and the insurance business in their joint project to reduce eligibility for sickness benefits.

‘Unum's 1995 'Chronic Fatigue Syndrome Management Plan' sounded the alarm: 'Unum stands to lose millions if we do not move quickly to address this increasing problem'.

It was actually Provident that was quickest off the mark, introducing an aggressive system of 'claims management' that would become the industry norm. It could not influence interest rates, but it could reduce the number of successful claims it paid out. Its Independent Medical Examination (IM.E.) was skewed in favour of the company through the work undertaken by its claims adjusters and in-house doctors. Illnesses were characterised as 'self-reported' and so thrown into question. Only 'objective' test results were accepted. Some disabling conditions were labelled as 'psychological', which made them ineligible for insurance cover beyond 24 months. Doctors were pressured to use the 'subjective nature' of 'mental' and 'nervous' claims to the company's advantage. Specific illnesses were targeted in order to discredit the legitimacy of claims. The industry drew on the work of two of the Woodstock conference participants, Professor Simon Wessely of King's College and Professor Michael Sharpe of Edinburgh University, in an attempt to reclassify [M.E.] as a psychiatric disorder. Success would allow payouts to be restricted to the 24 month limit for psychological claims and save millions of dollars. By 1997 Provident had restructured its organisation to focus on disability income insurance as its main business. It acquired Paul Revere, and then in 1999 merged with Unum under the name UnumProvident.

Meanwhile, in the US UnumProvident's business activities had been coming under increasing scrutiny. In 2003, the Insurance Commissioner of the State of California announced that the three big insurance companies had been conducting their business fraudulently. As a matter of ordinary practice and custom they had compelled claimants to either accept less than the amount due under the terms of the policies or resort to litigation. The following year a multistate review identified four areas of concern: an excessive reliance on in-house professionals; unfair construction of doctor's or IME reports; a failure to properly evaluate the totality of the claimants' medical condition; and an inappropriate burden on the claimant to justify eligibility for benefit. UnumProvident was forced to reopen hundreds of thousands of rejected insurance claims. Commissioner John Garamendi described UnumProvident as 'an outlaw company': 'It is a company that for years has operated in an illegal fashion.'’

“In November 2001 a conference assembled at Woodstock, near Oxford. Its subject was ‘Malingering and Illness Deception’. Amongst the 39 academics and experts was Malcolm Wicks, Parliamentary Under Secretary of State for Work, and Mansel Aylward, his Chief Medical Officer at the Department of Work and Pensions (DWP). What linked many of the participants together, including Aylward, was their association with the giant US income protection company UnumProvident”.

“New Labour was looking to transform the welfare system”.

“In 1994 Peter Lilley, (Conservative) Secretary of State for Social Security, hired John LoCascio to advise on ‘claims management’. Lo Cascio was second vice president of Unum. He joined the ‘medical evaluation group’.  Another key figure in the group was Mansel Aylward.  They devised a stringent All Work Test.  Approved doctors were trained in Unum’s approach to claims management”.

“(Unum)Provident introduced an aggressive system of ‘claims management’.

“Specific illnesses were targeted in order to discredit the legitimacy of claims”.

“In the UK, two Woodstock participants, Professor Simon Wessely and Professor Michael Sharpe, were working on reclassifying ME/CFS as a psychiatric disorder.  A change in classification would save the industry millions of dollars”.

“(In) 1999 New Labour introduced the Welfare Reform Act.  Mansel Aylward devised a new Personal Capability Assessment (PCA). The task of administering the PCA was contracted out to SchlumbergerSema which was then taken over (along with its DWP assets) by the US corporation Atos Origin.  Its computerised evaluation of claims resulted in significant numbers of rejected claims”.

“In July 2004 (UnumProvident) opened its £1.6 million UnumProvident Centre for Psychosocial and Disability Research at Cardiff University.  The company appointed Mansel Ayward as Director following his retirement from the DWP. Professor Peter Halligan, who had forged the partnership with UnumProvident, was ambitious: ‘Within the next five years, the work will hopefully facilitate a significant re-orientation in current medical practise in the UK’ ”.

“The two men were joined by Gordon Waddell, another Woodstock participant. In 2005 the centre produced The Scientific and Conceptual Basis of Incapacity Benefits (TSO, 2005) written by Waddell and Aylward and published by the DWP.  The methodology used by Waddell and Aylward is the same one that informs the work of UnumProvident”.

“In a memorandum submitted to the House of Commons Select Committee on Work and Pensions, UnumProvident define their method of working: ‘Our extended experience has shown us that the correct model to apply when helping people return to work is a bio-psychosocial one’ ”.

“Waddell and Aylward adopt the same argument.  Disease is the only objective, medically diagnosable pathology.  Sickness is a temporary phenomenon.  Illness is a behaviour”.

“(Incapacity benefit) trends are a social cultural phenomenon, rather than a health problem”.

“The solution is not to cure the sick, but a ‘fundamental transformation in the way society deals with sickness and disabilities’ (page 123)”.

“The goal and outcome of treatment is work”.

“No-one who is ill should have a straightforward right to Incapacity Benefit”.

“(In the US in 2004) Commissioner John Garamendi described UnumProvident as ‘an outlaw company.  It is a company that for years has operated in an illegal fashion’ ”.

“The (UK) 2006 Welfare Reform Bill sets a target of an 80 per cent employment rate. To achieve this, the numbers on Incapacity Benefit will have to be reduced by one million.  In 2008, Incapacity Benefit will be replaced by an Employment and Support Allowance. ‘Customers’ who fail to participate in work-focused interviews or to engage in work related activity will lose benefits”.



What is ME? What is CFS? Information for Clinicians & Lawyers 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.’



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.’



PUPPETS, PUPPETEERS, POLITICIANS AND RACKETEERS by Gurli Bagnall

But where does all this leave those who suffer ME, GWS and other “poorly understood” conditions?   We live in an environment  of secrecy; of a public being misled; of blatant lies  and  criminal behaviour covered up with the approval of governments.  Where does the buck stop? Who are the people who are making fortunes out of contrived diseases?

It is not hard to understand why Claire Wilson was chosen to interview Simon Wessely for the New Scientist recently — it certainly cannot have been for her journalistic abilities.   At least  99.9% of us were brought up to respect the medical profession.  The letters after the name  were enough to ensure the figurative bowing and scraping that was demanded  no matter how incompetent or how lacking some were  as doctors and  human beings.   

A medical career  afforded and affords sadists the opportunity to abuse   their powers and no matter how gross their behaviour,  the support has rarely been for the victim  —  the patient.  How ever illogical and unintelligent the doctor; how ever flawed his diagnosis and treatment,  he was never questioned.  He did as he pleased and was accountable to no one.   If a doctor said it, then it must be so and his word was law.  

Then along came Simon Wessely.   Where  in history has a western doctor engendered such public anger and dislike as has he  and by extension, his followers?  There has to be a reason yet journalist,  Claire Wilson, who interviewed Wessely on behalf of the New Scientist,   did not challenge his contention that the hate mail he CLAIMS to receive, goes with the territory.  Such public abhorrence  does not go with the territory and never has.  It seems the editor of the New Scientist  has his own place in the ranks of the puppet brigade.

The ME community in the UK was particularly hard hit when the Countess of Mar, long time champion of the cause in the House of Lords, switched sides. The organizers of the recent conference in the US talked of exciting progress with a diagnostic test just around the next corner.  All were encouraged to make a donation to the planned research.  

When it became apparent that CBT was included in these “exciting” developments with what appeared to be  an endorsement from Nancy Klimas, I put my papers away.  Too many puppets…too many puppeteers.


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

Patients with ME suffer a variety of symptoms arising from autonomic nervous system dysfunction (4.) including liability to a dangerous drop in blood pressure on standing for more than a few minutes, while some 20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led, in several cases, to sudden death following exercise.



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, 15th 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

The information in this document is relevant to the Gibson Inquiry, specifically the continued ignoring by the Department of Work and Pensions (DWP) and its commercial advisers of the compelling scientific evidence that myalgic encephalomyelitis / chronic fatigue syndrome is not a primary psychiatric disorder. If eligibility for certain benefits becomes contingent upon the intended implementation of compulsory psychiatric “rehabilitation” regimes, in cases of authentic ME/CFS it is likely to result in serious relapse that may be life-long (and may in some cases even result in death)



Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett

WHAT IS RESEARCH? It is simply an attempt to discover the truth. However, even in 1999, this search may still concentrate on one of 2 alternate pathways:

a)      The METAPHYSICAL (or philosophical) route which seeks to establish truth purely by reason and argument.

b)     The PHYSICAL (or scientific) path which sets out to determine facts by systematic investigation of material events and by experiment.

The metaphysical approach bears much the same relationship to the scientific as ASTROLOGY (which involves the influence of the stars on human affairs) does to ASTROPHYSICS (which determines the chemical and physical composition of astral bodies).

Although research funding for the study of ME is minimal in the UK, the major sources (totalling some £5 million in recent years) are non governmental agencies such as the Pharmaceutical and other industries. The major beneficiaries are, without doubt, members of the psychiatric profession who have exhumed ancient terms such as “hysteria” and invented new ones such as “somatisation” to explain that patients suffering from ME perpetuate their own illness. Previously reputable medical journals concur with this strange philosophy(11.)

In the mid 1980’s, the incidence of ME had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on “fatigue”(10.) (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. However, a “fatigue” definition (which also omits any reference to children) has proved disastrous for research in the current decade. Whether in its original form or in the 4 redefinitions which have followed, most research workers, led by the Americans are now calling for an urgent change (omitting “fatigue”) so that like can be compared with like in international ME research.



Unanswered Questions: do inconsistencies matter in medicine? By Margaret Williams, 10th September 2005

Following recent posts about the intention of members of the Wessely School / One-Health company to persuade Government agencies to implement a national programme of cognitive behavioural therapy and graded exercise regimes for those with alleged “behavioural” disorders in which they include “CFS/ME” (see Co-Cure ACT: “Proof Positive?”: 2nd September 2005 and “More Proof Positive?”: 4th September 2005), there are numerous inconsistencies that seem to remain unaddressed by One-Health company lobbyists. They include (i) the irrationality of drawing conclusions across differing patient populations (for example, lumping together those with primary psychiatric disorder and those with primary organic disorder and then claiming that this amalgamation represents one single “behavioural” disorder); (ii) the absurdity of relying on assumptions as the basis for a compulsory management regime (for example, that ME/CFS patients obtain secondary gain); (iii) the divergent assertions about the efficacy of cognitive behavioural therapy; (iv) the inherent danger of applying a “one-size fits all” management policy to those with “CFS/ME” and (v) the opposing evidence of these psychiatrists’ intention to claim “CFS/ME” as a psychiatric disorder.



Alterations in muscles of CFS patients at morphological, biochemical and molecular level. Pizzigallo E, Di Girolamo A, Montanari G, Dragani L, Vecchiet J, Calella G.

‘Our results agree with those of other AA (Behan et al., 1991; Gow et al., 1994). The alterations are compatible with a myopathy of probable mitochondrial origin. This could explain the drop in the functional capability of the muscle as a reduction in potency but, above all, as a reduction in resistance. In conclusion, even if CFS seems to be attributable to mitochondrial and/or muscular alterations, a damage in the central nervous system cannot be excluded. This could explain the neurophychological, behavioral, and neuroendocrinological alterations often found in these patients.


The Model of the Myth? Eileen Marshall and Margaret Williams, 17th March 2006

Perhaps Professor Peter White (editor of "Biopsychosocial Medicine: An integrated approach to understanding illness" [OUP 2005] who is currently principal investigator in the Medical Research Council PACE trials of this model) -- as well as other Wessely School members -- are unaware that the model they so fervently espouse is based not on a legitimate model by Engel after all, but simply on a myth? (For information on White's book, see "Proof Positive?" on Co-Cure ACT: 2nd September 2005).

The ME community may like to know that McLaren presented a paper entitled "The biopsychosocial model and scientific fraud" at the annual congress of RANZCP in May 2004, which is available from the author at Northern Psychiatric Services, Darwin, Northern Territory, Australia.

The papers by Susanna Agardy referred to in the paper above, are available at the links below:

DOES GRADED EXERCISE THERAPY IMPROVE POST-EXERTIONAL MALAISE IN CFS?

‘People with CFS/ME are being increasingly urged to exercise to improve functioning. In the same editorial the problem of post-exertional malaise is acknowledged: 'the cardinal phenomenon of fatigue in CFS is characterised by a marked and prolonged exacerbation of symptoms following minor physical activity'[1]. As CFS/ME people with this problem know, this exacerbation is often delayed and brings into play many symptoms. This should be enough to indicate that there is something extraordinary, rather than just exacerbated fatigue happening here. To what extent can the results of these studies be generalised to people with post-exertional malaise?’

Susanna Agardy's letter to Chris Clark

‘You might also ask, in the interest of clear unambiguous research, how they get the positive results for CFS/ME people in GET studies. You could ask why the Oxford Criteria are repeatedly are used for selection of subjects, when these criteria do not even include 'post-exertional malaise', that is, exercise intolerance, the distinguishing feature of CFS/ME. The use of the Oxford Criteria and of the ambiguous CDC criteria in exercise studies invites an unknown number of the subjects to participate, who very likely have idiopathic fatigue or something else. The results are then passed off as applying to ME/CFS people and widely imposed on us. The conclusions of these flawed studies acquire the status of self-evident truth by merely being repeated uncritically, ad infinitum. The PACE study, using the same inappropriate criteria, seems to be expected to put the cream on the cake and to confirm what is already held to be the truth.’


More on the Myth? by Eileen Marshall and Margaret Williams, 21st March 2006

What can explain the delusion that prevents certain psychiatrists from engaging with reality? Despite the significant evidence that destroys their misconceptions and shows their beliefs about ME/CFS to be wrong, Wessely School psychiatrists persist in their belief that it is a behavioural disorder that they believe is synonymous with “neurasthenia” and they continue tenaciously in their efforts to get ME/CFS re-classified as a mental disorder. Evidence-based reality seems entirely lost on this group of psychiatrists.

(Note: If the “biopsychosocial” approach worked and did not result in serious relapse, and if the biological factors were “largely reversible”, there would be no long-term sufferers from ME/CFS because patients are desperate to regain their health and independence. The GMC recently criticised and struck off a doctor for practising outside his area of expertise. If psychiatrists attempt to claim dominion over “ a wide range of disorders”, they might be at similar risk because it is not possible for them to be experts in such complex fields as vascular biology or gene expression that are known to be disrupted in ME/CFS. Wessely himself stated at his Gresham College lecture on 25th January 2006 that he did not understand immunology).


Exercise capacity and immune function in male and female patients with chronic fatigue syndrome (CFS). Snell CR, Vanness JM, Strayer DR, Stevens SR.

‘A significant multivariate main effect was found for immune status (p < 0.01), with no gender effect or interaction. Follow-up analyses identified VO2(peak) as contributing most to the difference. These results implicate abnormal immune activity in the pathology of exercise intolerance in CFS and are consistent with a channelopathy involving oxidative stress and nitric oxide-related toxicity.’



Is Stress more than a modern buzz word? by Dr Elizabeth Dowsett

"The major disadvantage of this illness is not a medical one but relates to a social climate of opinion in the media and medical press, which ascribes this serious neurological disability to some type of “personality disorder” rather than to underlying organic causes, of which we now have overwhelming research evidence. While this monstrous distortion of the facts blames the patient for deliberately causing and maintaining the illness, it conveniently absolves the statutory caring agencies from caring."

‘Response to cognitive behaviour therapy -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.’



Differences between ME & CFS by Dr Elizabeth Dowsett

"There are actually 30 well documented causes of ‘chronic fatigue’. To say that ME is a ‘subset’ of CFS is just as ridiculous as to say it is a ‘subset’ of diabetes or Japanese B encephalitis or one of the manifestly absurd psychiatric diagnosis, such as, ‘personality disorder’ or ‘somatisation’.

ME is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile"



Consideration of Some Issues Relating to the Published Views of Psychiatrists of the "Wessely School" in relation to their belief about the nature, cause and treatment of myalgic encephalomyelitis (ME), 2000

[Contains excellent information about Simon Wessely]

‘It should be noted that there is no evidence of maladaptive beliefs, nor of phobic avoidance of activity in patients with ME. In contrast to claims made by the "Wessely School", other more rigorously controlled studies have found low rates of depression.  Longitudinal studies using appropriate measures have shown that patients' attributions to a physical cause do not affect outcome; moreover, research on patients with ME indicate that a belief in a biological cause is not associated with poor mental health. There has been no study assessing the effectiveness of graded exercise or cognitive behavioural therapy in ME or in strictly-defined CFS. .

‘As long ago as 1988, young people with ME were being subjected to psychiatric "distraction therapy"; the most well-known case is that of Ean Proctor from the Isle of Man, then a twelve year old boy who, against his parents' wishes and with no prior warning, was forcibly taken from his parents. A policeman was standing by and a Court Order had been obtained (which was supported - in writing-by Wessely). Before being referred to doctors in London, Ean had been subjected to terrifying ordeals: his local doctors did not believe in ME so they devised activities which were designed to prove that the child's symptoms were simulated. One such "distraction therapy" involved taking the petrified child on a ghost train in the expectation that he would cry out in fear on 3rd June 1988 Wessely had written a letter saying that Ean's inability to speak was " elective mutism").’

Psychiatrists of the "Wessely School" seem to think that the standard of evidence required is different in the discipline of psychiatry: for example, they always quote extensive reference papers in supposed support of their published articles but with this particular group of psychiatrists, the impartiality of the references they cite needs to be scrutinised, because these psychiatrists often name just the lead author and perhaps two or three others and then write "et al". This is customary practice when listing medical references, but with this group, it conceals the fact that they are often simply citing themselves and their own papers. It used to be the case that editors of medical journals would permit no more than two or three self-references for an article. Seemingly, executive editors now make no stipulation about the number of self-references permitted, which automatically opens the door for bias and bad science and for those who are unashamedly self-promoters.’



Which Interventions are Helpful to Patients with ‘CFS/ME’? A REVIEW OF THE EVIDENCE

Those who seek to respond appropriately to the needs of patients presenting with a diagnosis of ‘Chronic Fatigue Syndrome’ [CFS] – whether policy makers at political level, service planners, or providers on the ground – should be aware that evidence for the efficacy of behavioural interventions (graded exercise/activity and cognitive behavioural therapy [CBT]) is contradictory and by no means conclusive. (see pages 5-13 )

 “Much of the current thinking about CFS and M.E. is driven by models of deconditioning. … But what if exercise results in a huge delivery of free radicals, not because of disuse of muscle and deconditioning, but because there is something organically wrong with muscle metabolism? What value exercise in these circumstances? These are crucial questions, and it is important to remember that the current evidence [sic] for deconditioning is not based on scientific investigations of muscle but on suppositions about patients with 'fatigue'.” 58

“By far the most unhelpful form of treatment was considered to be Graded Exercise Therapy (GET). This finding 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.”


Exercise Capacity in Chronic Fatigue Syndrome Pascale De Becker, PhD; Johan Roeykens, PT; Masha Reynders, PT; Neil McGregor, MD, PhD;

‘This study clearly shows that patients with CFS are limited in their physical capacities. Based on the American Medical Association Guidelines for Impairment Rating,51 our 55.2% of patients who had a VO2max of less than 20 mL/kg per minute correspond to class 3-4 on the disability scale, indicating moderate to severe impairment.51

‘CFS can and does result in prolonged debilitation.3, 4, 51


Chronic fatigue syndrome Neil C Abbot (a,b) and Vance Spence (a) The Lancet 2006; 367:1574

The overwhelming focus of the Seminar is on one model of chronic fatigue syndrome-the biopsychosocial model, a construct which contrasts with the biomedical model which implies that a primary disease entity exists and that biopsychosocial aspects are secondary (the two models discussed in the report to the UK Chief Medical Officer in 2002 [3]. The biopsychosocial model is supported only by researchers with a professional interest in psychosocial aspects of illness who have acquired the funding to test their hypotheses.



Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists by Eleanor Stein MD FRCP(C)*[see notes on this text below]

If ME/CFS were a psychiatric disorder, one would expect psychological symptoms to predict outcome. However this is not the case. Studies consistently show that symptom severity at onset and whether one meets full criteria for CFS [ie. Myalgic Encephalomyelitis] predict prognosis in ME/CFS (Darbishire et al, 2005) but psychological symptoms and cognitive beliefs do not (Deale et al, 1998;Jones et al, 2004a). (Darbishire et al, 2005;White et al, 1998)

‘Although Cognitive Behavior Therapy (CBT) is widely recommended for patients with ME/CFS, it is far from clear whether cognitive behavior therapy is helpful for most patients. CBT to convince a patient that s/he does not have a physical disorder is disrespectful and inappropriate.’

Despite the fact that worsening of symptoms after exercise is a compulsory criteria for diagnosis of ME/CFS, graded exercise programs have often prescribed for such patients. Presumably these recommendations are made on the assumption that exercise will be accompanied by improved aerobic capacity, increased anaerobic threshold and improved exercise tolerance. However, in patients with ME/CFS, neither exercise tolerance nor fitness has been shown to improve with exercise programs.

[*Note: This article is tentatively included as it contains some very good factual information on the lack of evidence and uselessness of CBT and GET and the psychological approach in general in M.E. patients. However, perhaps due to the author’s area of expertise, parts of it also (in complete contradiction) greatly overstate the need for psychiatric intervention and involvement in M.E. treatment and diagnosis; ideas not supported by this website, nor the existing literature and biomedical research on M.E. In other words, much of the information on this paper relates to ‘CFS’ rather than M.E.]


Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett

"To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague “fatigue” entities, must appear more of a marketing exercise than a rational basis for essential international research. It was not always so unnecessarily complicated!"


Repetitively negative changing T waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome - left ventricular dysfunction in a cohort. Lerner AM, Lawrie C, Dworkin HS. Chest 1993; 104(5): 1417-21.

‘The patients with CFS all had abnormal Holter readings’ ‘All 60 patients with CFS showed repetitively flat to inverted T waves alternating with normal T waves.’



AN INTOLERABLE OBSCENITY by Gurli Bagnall, 21 March 2005

The job description for Trainee Clinical Fatigue Therapists in some of the new network of 12 Fatigue Clinics across England, was the last straw. While the language used was not unexpected, to see it in black and white was nevertheless a body blow to those who suffer Myalgic Encephalomyelitis as defined by the WHO, for it is at them that the proposed "services" are aimed.



The Pros and Cons of ME clinics by Gurli Bagnall, 27 July 2006

'What life saving strategies do the clinics have? How do the Clinics deal with heart failure or any organ failure for that matter? How many will die of such failures, or cancers or despair -induced suicides while undergoing a course of Cognitive Behavioural Therapy and psychotropic drugs? In whom should we have faith. "Seize this opportunity," Ms. Adcock urges. What opportunity? From my hospital-type bed and motorized wheel chair, I don't see the new clinics presenting any opportunity at all.’

OPEN LETTER TO MS. AUDREY ADCOCK by Gurli Bagnall, 28 July 2006


Exciting New Direction? (Do they think we are nuts?) by Gurli Bagnall, May 2008

I refer to the Fair Name Campaign Update - Exciting New Direction, written by Rich Carson. I would like to pass a couple of short comments. When this Fair name campaign first raised its head, the manner in which it did so, left me thinking, "They're trying to tell grandma how to suck eggs!"

Here were a bunch of strangers telling people who have endured ME for years - even decades - what to do and how to do it. Today, 21 May 2008,  they are still pushing that same barrow   -   a very similar barrow to the one that Wessely and others (in the UK) have been pushing since the 1980s. We know the moves; we  know the tactics. We could give Rich lessons if he wants....  After thinking for awhile, I managed to get off my bed and onto the motorized wheelchair without which, I go nowhere - even in the house - and I headed for my computer. 

This update, reminded me of James Jones (if I remember the name correctly) who is a colleague of Rich and Cort. Readers might recall that Jones entertained us with his version of the definitions of sickness, illness and disease. He maintained that people can be sick and ill at the same time, but not diseased. On the other hand, they can be diseased and ill, but not sick! Yet again they can...

Mr. Jones was clearly excited about this topic and went on at considerable length with many convoluted explanations. The feeling I got was that he desperately WANTED to say something, but really he had nothing relevant to say! What a shame! How very sad! If he had just given it some thought, he would have realized that there are none so diseased as those who suffer a terminal illness; a point I raised at the time.

It was clear to me these people had an agenda which has nothing to do with fairness for the sufferers. In fact if they ARE speaking about an actual disease, that disease is not ME. What  makes me so sure of that, is something Rich said. Quote:

"First, and most importantly, the patient community has jumped on board. Your feedback has been positive and encouraging."

Say honey chil'! Haven't yo' been readin' letters on the internet lately? Seems to me no one was jumpin' about anywhere! There sure as heck weren't no GET goin' on in ma neck of the woods. Even ma wheelchair won't do no wheelies no mo'.

Seriously, folks, I am sure Rich et al. don't really think we are a bunch of numbskulls to be manipulated and treated with contempt. I feel sure their hearts are in the right places and probably have some disorder or other in mind. But it is NOT  ME and before they go any further, they really need to get the basics right; sort out their illnesses, sicknesses and diseases and then start afresh towards wherever they thought they were heading in the first place. Who knows....Alice might give them a guided tour of the rabbit hole!

Some time ago, erikmoldwarrior posted a quotation which I think is relevant at this time. I have copied it out below and thank Erik for drawing it to our attention:

"A nation can survive its fools, and even the ambitious. But it cannot survive treason from within.

An enemy at the gate is less formidable, for he is known and he carries his banner openly. 

But the traitor moves among those within the gate freely, his sly whispers rustling through all the alleys, heard in the very halls of government itself. 

For the traitor appears [as] not [a] traitor - he speaks in the accents familiar to his victims; and he wears their face and their garments, and he appeals to the baseness that lies deep in the hears of all men.

He rots the soul of a nation - he works secretly and unknown in the night to undermine the pillars of a city - he infects the body politic so that it can no longer resist. A murderer is less to be feared. "

Cicero, Roman philosopher and statesman, 42 BC 

To put it another way: With friends like these, who needs enemies? (Author unknown.)


WHEN WILL THEY EVER LEARN? by Gurli Bagnall

Those who favour CFS/ME or ME/CFS  seem to be under the impression that Myalgic Encephalomyelitis sufferers will be delighted to accept this compromise.  But we have already lived with that particular compromise for some years and we are still 'kindly' being told  that this choice describes
the disease the best.  

For goodness sake!  This is a serious matter.  It is not a child's game!  We do not live with Alice in her Wonderland.  We live in the real world where the name of a disease influences impressionable members of the medical profession to the point where their prejudices turn to outright abuses.

Having seen and experienced the disastrous effect CFS had and has upon our lives, we now hear that certain  experts in the States have taken up the good fight for a "fair name".  No wonder outsiders are often confused! The cool, calm and kindly manner of the "experts" is at odds with the patients' very apparent anger.


CONSPIRACIES AND BETRAYAL: Is NICE really nice? Gurli Bagnall, November 2008

Remember the wording used in the recruitment of  “therapists” to administer  CBT/GET at the  CFS/ME clinics around the UK, and know that the main (figurative) requirement was a stout pair of jack-boots.  
 
Conspiracy “theory”?    The denials, rejections and silences surrounding the results of genuine research into the physical causes and effects  of ME, are not theories.  They are fact and without doubt, conspiracies.
 
How can the Countess justify her actions?  


BREAKING A SILENCE By Gurli Bagnall

The subject of  Dr. Rosamind Vallings¹ recent award has been in the headlines lately and no doubt she has helped many suffering from chronic fatigue or chronic fatigue syndrome as found in mental disorders.
 
Her own preference for the use of the terms CFS  and 'encephalopathy' suggests that this is so. Myalgic encephalomyelitis, categorized by the
WHO as a neurological disease, is another matter entirely.

In the UK since the mid to late 1980s, the title of the condition went from ME to CFS to CF to CFS/ME and ME/CFS.  No wonder people are confused.  In this instance, confusion serves those who create it and the pharmaceutical industry well.  
 
To say: 'I suffer ME  -  not CFS!'  is difficult when relying upon the signature of an antagonistic doctor for the very right to exist.   But unless we do,  we will continue to suffer and die in this hell on earth that has quite deliberately, been created for us.


The Deified Doctor Syndrome (DDS) by Gurli Bagnall 2006

'Health is supposed to be the medical profession's business. Reason tells us that whatever is called for, be it drugs, acupuncture, herbs, supplements etc.  the medical profession should be able to respond. Yet the statistics leave us in no doubt that instead of curing us,  they are either killing us off, making us seriously ill or not making any difference at all.'



Muscle fibre characteristics and lactate responses to exercise in chronic fatigue syndrome Russell J M Lane,a Michael C Barrett,b David Woodrow,b Jill Moss,b Robert Fletcher,b Leonard C Archardc a

‘Muscle histometry in patients with chronic fatigue syndrome generally did not show the changes expected as a result of inactivity. However, patients with abnormal lactate responses to exercise had a significantly lower proportion of mitochondria rich type 1 muscle fibres.’ 



Editorial: Our Conflicted Medical Journals

The New York Times, July 23, 2006

‘Leading medical journals seem to be having a difficult time disentangling themselves from the pharmaceutical and medical device industries. If they cannot stop printing articles by scientists with close ties to these businesses, they should at least force the authors to disclose their conflicts of interest publicly so that doctors and patients are forewarned that the interpretations may be biased.’

[Bias in medical journals is an issue particularly relevant to M.E.]



Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia:additional considerations for the MRC in relation to the PACE trials by Margaret Williams, 5th January 2005

For convenience, information already provided for the MRC PACE trial investigators about the most recognised differences between ME/CFS and FM is reproduced and summarised here:

In respect of the MRC CFS trials, there are known and established differences between FM and ME/CFS and many believe that the FM community and the ME/CFS community have a right to know why patients suffering from both disorders are to be amalgamated in the MRC trials that claim to be studying “CFS”.

Likewise, an explanation is required as to why GPs are suddenly to be offered financial incentives to identify and refer people with FM to the new CFS centres specifically so that such patients can be entered into the MRC studies of “CFS”.



UNUM Provident, Dr Mike Sharpe and Cognitive Behavioural Therapy: information which the MRC might wish to consider Eileen Marshall; Margaret Williams 12th April 2003

‘Both the worldwide ME/CFS community and the MRC RAG on “CFS/ME” may be particularly surprised at Dr Michael Sharpe’s evidence in Dr Morris’ legal action. Sharpe, author of the article relied upon by UNUM, admitted that (quote) “two subsequent controlled trials found cognitive behaviour therapy to offer no benefit over non-specific management” (Exhibit #13-12).

Given that the MRC’s RAG draft document on future research strategies for “CFS/ME” (compiled by Dr Chris Watkins, whose title is MRC Programme Manager for Research on Mental Illness and Drug Addiction) states at paragraph 166 that the direction of future management strategy in the UK should be CBT and graded exercise regimes, and that further research should “concentrate on the effects of these interventions across the spectrum of the disorder” (ie. on both the least severe and on the most severe cases), members of the MRC Research Advisory Group may now, in the light of Dr Sharpe’s explicit evidence, wish to re-consider their preferred management strategies for this complex neuro-endocrine-immuno-vascular disorder. ‘


ME: WHY NO ACCOUNTABILITY? A synopsis for the UK Parliamentary Inquiry By Professor Malcolm Hooper and Margaret Williams, 18th August 2005

‘ME is a multi-system disorder of extraordinarily incapacitating dimensions from which complete recovery is unlikely. It can be a devastating condition, with some patients being unable to speak or swallow and needing to be tube-fed for years; at least 25% of sufferers are severely affected, yet patients are accused of malingering. On the advice of Wessely School psychiatrists, state benefits are refused or withdrawn, even in cases of ME where they have been awarded for life. Many with ME commit suicide: in the UK, figures are said to run at one ME suicide per month. This is not because patients are psychiatrically ill: it is because they are completely unable to look after themselves and are too sick to survive without the necessary support, both medical and financial.’



Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research by Professor Hooper 2006

‘Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME/CFS by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness

I would propose that the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of ME, already carried out by several leading research groups, now requires significant funding.’



FITTING THE PUZZLE TOGETHER by Gurli Bagnall 2009 

"A new explanation was obviously called for, and without a by-your-leave,  the typical successful career woman from the middle classes was scrapped in favour of a poorly educated person from a low socioeconomic background.  Well….why not?  If the label CFS is pinned to those presented as disenfranchised and vulnerable, who in authority,  is going to argue?
 
CFS is not a diagnosis — it is an opinion. Those who promote it, create confusion with the clear intention of setting  one group against another.  Having created the mayhem, they sit back, feet up on the desk, hands behind the head, sucking on a fat corporate cigar while smugly saying, “Well….after all, what can you expect from hysterical people?”
 
Their arrogance and their confidence in themselves to manipulate the system reached the  point some years ago  where an attempt was made by stealth and deceit,  to alter the WHO’s International Classification of Diseases (ICD) which lists ME as a neurological condition.  To the lay person, this might seem like a criminal act but no one has ever been held accountable for this and other actions  —  a clear indication of  the enormous wealth and power of the puppeteers who are pulling the strings behind the scenes.
 
Many of those who suffer Myalgic Encephalomyelitis (ME) are rightly adamant that whatever the above self-styled “experts” say,  this condition  bears no relationship to the group of psychiatric disorders that fall under the umbrella title of the politically contrived CFS."


IN ANGER by Gurli Bagnall 2009 

"Similarly, the guidelines for the management of Myalgic Encephalomyelitis  (ME) as decided by NICE  are concerned with politics, not reality.   That NICE has the support of the medical profession in general,  the Judiciary,  and certain members of parliament and the House of Lords, including Baroness Thornton, speaks for itself.
 
One would have hoped the authorities at this level would take responsible action; would lift the edges of the carpet to see what is hidden underneath; would be concerned about the reasons for the contention.
 
Instead, and as  the  Baroness has ably demonstrated,   there are many in authority who have no experience or knowledge of ME; who do not have the intellectual acumen or who simply cannot be bothered to seek the answers.  Adding to the dangers for those who suffer the condition, are  the conflicts of interest amongst the law makers.
 
The following  comments made by Baroness Thornton need special mention.

QUOTE:
“It goes so far as to say that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.”
 
COMMENT:
The Baroness is no doubt skilled in many areas, but expertise in the intricacies of entertaining does not offer experience is THIS field. Her statement is so out of touch it would be laughable  if it were not so tragic."



ME Exists: True or False? by Eileen Marshall and Margaret Williams,18th August 2006

It seems that the powerful vested interests groups who now control the Establishment will tolerate no opposition, with the result that NHS doctors' freedom to practice medicine is increasingly proscribed.

With no hope of funding to establish a diagnostic test and with no will by the Royal Colleges or Government to formulate or accept an accurate case definition, the situation relating to ME/CFS in the UK cannot improve.

So many abnormalities have now been shown to occur regularly in cases of authentic ME/CFS 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.



CBT in ME/CFS - More Information by Eileen Marshall and Margaret Williams, 23rd August 2006

In our document "ME Exists: True or False?" we drew attention to recognised abnormalities in ME/CFS, one of which being the significant loss of grey matter in the brain with irreversible loss of grey cells, especially in Brodmann's area 9, and mentioned that this may indicate major trauma to the brain.

If such trauma to the brain exists in ME/CFS, then the chance of cognitive behavioural therapy (CBT) being effective in ME/CFS is probably zero and the MRC PACE trials may be a disaster for the psychiatric lobby.



Circulating Blood Volume in Chronic Fatigue Syndrome David H. P. Streeten, MB, DPhil, FRCP, FACP David S. Bell, MD, FAAP

‘Of the 19 patients reported here, abnormalities in blood volume were very common. The most common, found in 16 of 19 patients, was a reduction in red blood cell mass. Eleven subjects had low plasma volumes, and total circulating blood volume was subnormal in 12 of 19 subjects. In some individuals this abnormality was strikingly severe. Patient #15, for example, had an RBC mass of 12.9 mL/Kg, which is 46% of the expected normal, and a total blood volume of 35.8 mL/Kg, which represents 49.7% of the expected normal value (21). In general, blood pressure measurements were not predictive of the results of circulating blood volume measurements.’ 



ARE MPs ASKING THE RIGHT QUESTIONS? By Campaigning for Research into Myalgic Encephalomyelitis: RiME

In May you asked the Secretary of State for Health a question about the new NHS 'CFS/ME' centres which are being developed in England. It would appear from that you are working from the assumption that people with ME welcome the centres. We beg to differ. Please read the enclosed information from our last two newsletters. As you will see, people (including health professionals) from Kent, Hants, Birmingham, Shrops, London and Manchester are either opposed to the centres or have serious concerns. We have received further complaints from other areas.

The pivotal issue in all of this is nomenclature. The Govt has both cleverly and deliberately fudged a neuro-immune-vascular disease (ME) with Chronic Fatigue and loosely defined CFS. I enclose information which contrasts the Canadian Criteria, which our supporters recognise, to the Oxford and Fukuda Criteria, which they don't. It would appear that some centres will be admitting using the Fukuda or a version of it.

People with ME deem these centres not only to be unhelpful, but to be working against their interests. Imprecise admittance criteria will produce skewed results which (1) might be used as a further excuse by the Govt for not researching the underlying physical causes of ME (the Govt, shamefully, has not invested a single penny in this area) (2) lead to a situation where peolpe with ME's benefits are linked to them attending the 'mental rehab centres'.

To the news that the funding for the centres might run out; well, many with ME are saying 'hooray!'.



There’s no smoke without fire! Some comments on the tendency to relapse in ME by Dr Elizabeth Dowsett

‘ME commonly follows a virus infection, which, at first, appears to be trivial. However, the illness soon becomes distinguishable from other forms of post viral debility (including that associated with influenza) because of its prolonged course and tendency to relapse, making it inadvisable for sufferers to return to school, college or work without adequate convalescence. In a society which rates speed, sport and entertainment so highly, slowing down to rest will be unpopular and most young people will need some persuasion. The commonest causes of such a reverse in ME appear to be mental and physical over exertion.’



Submission To The Parliamentary Inquiry Into Progress In The Scientific Research Of M.E. By The 25% ME Group (Word format)

“It seems we are constantly having to fight on different fronts concerning how ME sufferers are treated when it comes to the medical profession or the benefits agency” writes Simon Lawrence in the (Winter 2005) Newsletter of the 25% Group.

The truth is that those with ME can be so ill and not get better; they can be so ill, not just for a few weeks, but for years on end, for decades even, without remit, without any relief, while psychiatric research accrues every single penny of Government funding for itself in a fruitless attempt to research and implement an inappropriate, harmful behavioural and exercise regime:

Giving GET and CBT to people with ME is like trying to prescribe treatment without first investigating the disease – madness! We need proper biomedical research to find out the cause(s) of this illness and to investigate fully what it does to the body. GET and CBT have been found to be at best unhelpful to those with ME at worse, harmful.

Sufferers are far too ill to protest, and too ill to ever undergo the so called behavioural remedies being developed in their name, but will never successfully treat anyone with real ME, as one sufferer explains:

“I have been ill in different phases for 15 years. I have worked it out for myself that you can only “exercise” within very narrow limits. It is simply not the case that you can exercise your way out of this illness. If it were that simple most people with ME who were previously very fit and active, would have long since recovered.”

For more see: http://www.25megroup.org/Campaigning/Gibson%20Parliamentry%20Inquiry/Gibson%20Inquiry.htm



ME/CFS Politics in a Nutshell (UK) by Kevin Short

‘Ever mindful of budgets, In the UK, Government Ministers have been captured by the psychologising views of the Wessely School, Insurance Industry and the DWP 4 and are pursuing their ‘Pathways to Work’ project - which is set to gain momentum from 2005. A situation where sufferers of a physical neuro-immunological disease (M.E.) will be routinely referred to psychiatrists as mental health patients – and subject to harmful ‘treatment’5 upon pain of benefits withdrawal – is being set up. This is NOT exaggeration.

In spite of all the biomedical evidence to the contrary, these vested-interest psychologisers continuously maintain their anti-science mantra: that ‘M.E. is perpetuated by mistaken belief and sick-role behaviour’. Their well-funded lobby machine relentlessly bombards parliament and the media with disinformation - and they flood medical and trade journals with extremely low quality psychiatric ‘research’ papers.7 Inevitably, all of this adversely affects the views of time-pressed GPs who are simply too busy to read all the bio-medical research papers themselves.’



80% of an AfME survey said the clinics were a good thing by Stephen Ralph

In sticking up for Professor Pinching and the "CFS/ME" "Fatigue" Clinics the correspondent cites a recent survey where 80% of attendees state that they were satisfied with the service provided to them.

And in the next breath the correspondent states.... this survey was published in (no less than) InterAction - the publication of Action for ME who as we know are bank-rolled by the Department of Health who have given them hundreds of thousands of pounds in grants to set up these clinics based on the AfME/Westcare model with the sole aim of dishing out mental health treatments and graded exercise and nothing more.

So my comment would be... well they would wouldn't they! Of course they do not mention that they themselves or indeed Action for ME do not represent the whole ME community by far and they do not say if those attending these clinics accurately represent in any way shape or form those people who have the specific signs and symptoms of ICD10-G93.3 Myalgic Encephalomyelitis.

The fact is that this 80% figure of individuals do not present to these "Fatigue" Clinics with the specific signs and symptoms of G93.3 Myalgic Encephalomyelitis.


The Australasian Report on CFS compiled critiques by Margaret Williams, 2001

Compiled by Margaret Williams on 2 December 2001 from various critiques posted on Co-Cure

In 1996 Dr Michael Wooldridge, Minister for Health and Family Services, approved an application to Medicare to provide funding of $130,000 to the Royal Australasian College of Physicians (RACP) to produce Guidelines on the most clinically relevant and cost effective methods of diagnosing and treating CFS.

The first draft report was released in December 1997 and was heavily criticised. The second draft was released in June 2001 (this four year delay achieved nothing). As in the UK CMO’s report, the guidelines focused on the (psychiatric) management of symptoms, not on discovering their cause. They ignore the substantial evidence of organic disease.

‘The failure to mention any of the evidence of physiological and neuropsychological deficits in CFS is disappointing in a document sponsored by an authoritative body who would presumably wish to present an accurate and unbiased view of current medical knowledge…..The authors could hardly be unaware of the repeated findings by unaffiliated groups of autonomic dysfunction (and) immune dysfunction in CFS…. In conclusion, this document...will ensure that most persons with CFS in Australia will continue to be inadequately treated.’

‘The RACP seems to suggest that cognitive behaviour therapy (CBT) provides a clear understanding of CFS. This claim is unfounded and lacks evidence…CBT is not a specific strategy for CFS where its claimed benefit is still questionable….no long-term study has established that graded exercise programmes can significantly improve aerobic capacity in CFS…..It appears that the RACP has failed to recognise that post-exertional malaise is a valid CFS symptom. There is no evidence that patients with CFS demonstrate avoidance behaviour to physical activity as claimed……the second paragraph of this section is a mixture of imagination and half-truths and should be entirely deleted. The UK experience of graded exercise in CFS has shown that as a single intervention, graded exercise was associated with the highest negative grading.’



The Late Effects of ME by Dr Elizabeth Dowsett

Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common[4]. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.[16]

Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously![11,12,13]" 



PACE TRIALS : The Background by K. Niven

The psychosocial model of ME is erroneous, illogical, and deeply offensive.

a.. It has caused misery and suffering to thousands of people with ME throughout Britain.
b.. It has stopped investigations into the illness, and thus hampered scientific progress towards a better understanding of the condition.
c.. It has led to children being refused home education, and sometimes even forcibly removed from homes, because their parents are suspected of making them ill (Munschausen's Syndrome by Proxy).
d.. It has led to wide-spread derision and abuse of children and adults with ME by medical personnel.
e.. Patients have often been denied a diagnosis, care and appropriate advice. In many cases, they have been given inappropriate advice or therapies - like GET and CBT - which made them worse.


Comments on the CDC's latest 'CFS' press release

Comments about the current (worrying) state of Australian ME societies



A conflict of interests at the MRC by Stephen Ralph

As we all know here, the monies allocated by the MRC to the PACE and FINE trials have been handed to a select group of psychiatrists who themselves have and still do repeatedly claim to their own peer group audiences that "CFS/ME" is one in a group of Psychosomatoform Disorders or to put it another way.... a mental illness that causes multi-functional impairment that they claim can be treated and indeed cured using CBT and Graded Exercise Therapy.

This CBT/GET combination is being handed out to patients currently labelled with the heterogeneously labelled "CFS/ME" now referred to singularly as "this illness" at a string of mental health "Fatigue" clinics.  To sweeten the pill, Action for ME has played a key part in deceiving the "CFS/ME" community by selling such treatments to patients claiming that "CFS/ME" is a real and distressing illness but at all times using language that does not emphasise the belief of mental health origin as claimed by the somatoform psychiatrists whom AfME are supporting at the very heart of the PACE and FINE trials.

It seems to me that the Medical Research Council has a clear conflict of interests in all this.



Response to the MRC Research Advisory Group (RAG) Draft Document for Public Consultation on “CFS/ME” Research Strategy dated 17th December 2002

M Hooper 1 EP Marshall 2 M Williams 2

Preface: On 14th January 2003 there is to be a meeting at The Royal Society of Medicine entitled “Chronic fatigue syndrome and factitious illness: interface between child psychiatric and paediatric services”.

[According to the Concise English Dictionary (Bloomsbury 2001), “FACTITIOUS” means “contrived or insincere rather than genuine; not real or natural but artificial or invented”].

It is intolerably patronising to insist that CBT and graded exercise therapy should be the way forward in “CFS/ME” on the grounds that such interventions may help patients suffering from other “physical” disorders such as cancer to manage their situation better, whilst at the same time promoting and limiting research into “CFS/ME” to that designed to “strengthen” psychotherapy strategies rather than looking into underlying causes (as is the case in cancer).

The MRC “CFS/ME” Research Advisory Group seems not to agree that “Behavioural and rehabilitative strategies are fine as far as they go, but attention (and funding) must be focused on developing diagnostic tests and medical interventions to address the biological and physiological underpinnings of the illness” (36).

It is noted with particular regret that no-where in the MRC draft document is there any mention of the RiME petition (Research into ME): this petition carried over 16,000 signatures and it asked:

“That a panel of specialists in the fields of Neurology, Immunology, Endocrinology and other disciplines, but with the exception of Psychiatry, be established to commission research into the aetiology (underlying physical causes) of ME. That a research programme be up and running by the end of 2002”.



MYALGIC ENCEPHALOMYELITIS (ME)  the impact on sufferers: is health policy in Scotland on the right path? 21st March 2005

This is a Briefing Paper that has been sent out to all Scottish MSP's via the Cross Party Group

The clinical profile of ME is unique and does not mimic any other illness.

·       Post-exertional malaise is a key defining feature.

·       Patients experience a considerable exacerbation of symptoms which may precipitate a significant relapse, even after minor amounts of physical exertion.

·       Mental activity can also exacerbate symptoms.

 

The sole source of evidence which would support behavioural interventions is research studies aiming to address the needs of patients with unexplained chronic fatigue, not ME.

 

The evidence for GET in respect of ME is disputed. (Appendix 3)

·       In one survey of severely affected patients, 8 out of 10 reported that their illness had been made worse by graded exercise.

·       Some of these patients were not severely affected before graded exercise therapy. “no other treatment (sic) – pharmacological or non-pharmacological – received such negative feedback in patient surveys” ( Dept. of Health, 2002, p47)

·       Biomedical research evidence supports the inappropriateness, and at worst harmfulness, of graded exercise to patients with ME.

·       It is unacceptable that CBT may be applied in ways which encourage ME sufferers to believe that their illness does not have a biomedical basis.

·       Duty of care is called into question if behavioural interventions are the only approaches offered to ME sufferers.



Vagal tone is reduced during paced breathing in patients with the chronic fatigue syndrome. Sisto SA, Tapp W, Drastal S, Bergen M, DeMasi I, Cordero D, Natelson B. Clinical Autonomic Research 1995; 5(3): 139-43.

‘Using this method, although there was significantly less vagal power in the sitting versus the standing postures for both groups, the overall vagal power was significantly lower (p < 0.034) in the CFS group versus healthy controls. Vagal power was also significantly lower (p < 0.01 to p < 0.05) at all breathing rates in both postures except while standing and breathing at 18 breaths/min.


Exercise responsive genes measured in peripheral blood of women with Chronic Fatigue Syndrome and matched control subjects. Whistler T, Jones JF, Unger ER, Vernon SD.Journal: BMC Physiol. 2005 Mar 24;5(1):5 PMID: 15790422

‘Exercise-responsive genes differed between CFS cases and controls. These were in genes classified in chromatin and nucleosome assembly, cytoplasmic vesicles, membrane transport, and G protein-coupled receptor ontologies. Differences in ion transport activity/ion channel activity were evident at baseline and were exaggerated after exercise as evidenced by greater numbers of differentially genes in these molecular functions.’


Notes on the involvement of Wessely et al with the Insurance Industry and how they deal with ME/CFS claims 2003, Stephen Ralph

The insurance companies known to be involved in ME/CFS claims include, in addition to UNUM, Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life and Permanent Insurance, and as Re-insurers, the massive Swiss Re (not the same as Swiss Life). Swiss Re are currently building a huge circular eyesore in London which has been dubbed the “gherkin”. These insurance companies all seem to be involved in RE-INSURANCE; for example, Norwich Union uses Swiss Re and psychiatrist Peter White is one of the Chief Medical Officers for Swiss Re. Their other “CFS experts” are Michael Sharpe and Simon Wessely, and they also use psychiatrist Anthony Cleare (a frequent co-author with Wessely who works in the same department) for the insurers. There seem to be two ways in which claims are underwritten between insurers and re-insurers: either the insurers agree to pay claims up to a pre-determined cut-off limit, after which the re-insurer becomes liable, or else the insurer and the re-insurer agree from the outset to share the costs of a claim.

This means that there is little hope of an ME claim succeeding, because both the insurers and the re-insurers all use the Wessely School psychiatrists to inter-refer claimants with ME/CFS. Given that insurers can refuse to pay out on claims until the claimant with ME/CFS has undergone a “rehabilitation” programme arranged by the insurer, this must surely result in a major conflict of interests because Peter White, Michael Sharpe and Wessely’s assistant Trudie Chalder (a former mental nurse who obtained a PhD and who seems often to be used as a grant front by Wessely) are the beneficiaries of the MRC’s latest £2.6 million grant to “strengthen” the very weak evidence that cognitive behavioural therapy (CBT or “brain-washing”) and forced “rehabilitation programmes” (graded exercise therapy or GET) actually work for those with ME/CFS, but the clear evidence is that they do not, and are in fact harmful.



THE UNDESERVING ILL - A WARNING - by John Sayer

It is my belief that the current - almost frenzied - campaign to psychologise M.E. and similar conditions is part of this propaganda and represents a dress rehearsal for the wider application of the psychosocial classification of a new "underclass" of "the undeserving ill", stripped of some of the very rights the Second World War was supposedly fought for by the Allies.



Outrageous job description for ME/CFS nurse therapist by John Sayer

These job descriptions relate to a philosophy - ALREADY IN PLACE - of subjecting "CFS" sufferers to psychotherapy designed to "prove" to them that they are simply perpetuating their own illness through aberrant belief systems.

At the risk of sounding patronising, it is time to stop considering columnists like Victor Lewis-Smith, Julie Burchill and Stacia Briggs as some kind of harmless and irrelevant joke. They are part of the propaganda machine (whether they intend to be or not) that props up this tyrrany.


 


THE TRAVESTY OF SO-CALLED "M.E. TREATMENT" by John Sayer



Science or Psychology? Margaret Williams, 29th March 2005

“One interesting correlate of this study was the finding that the complement pathway showed significant differences between (ME)CFS and control subjects after exercise. This has been reported previously by Sorensen at al (J Clin Immunol 2003:112:397-403). Complement activation was identified as an ontology that was significantly different between (ME)CFS and control subjects after exercise”.

Why does the UK ME/ICD-CFS community have to rely on Dr Derek Enlander from the US to write to Prime Minister Blair and inform him that: “Over the past several years there is a tragedy in the manner in which the NHS and British politicians treat ME/CFS. Under your watch, millions of pounds have been misspent supporting ill-founded psychiatric notions of this disease. The cognitive behavioural programme that your government has funded is inherently flawed, in fact does harm. There is NO evidence of treatment efficacy in behaviour modification or paced therapy in this disease.


"No Total Rest" prescription is irrelevant to acute ME From Ciara MacLaverty, June 2005

It's been almost 20 years since I was first diagnosed with ME. The controversies surrounding causes and management of ME have raged through the decades but one fact remains constant: I took a virus in 1987 and I have never had a day's full health since then. My health appears to be permanently damaged. Ditto hundreds of thousands of sufferers.

I want to express my concerns over the widely touted dictate that "Total and/or Prolonged Rest is counter-productive in ME." Even some of the moderates, who are firmly in the "ME is a serious physical illness" camp, can advocate this position. The "No Total Rest" (NTR) approach simply does not apply to my experience of severe ME.



The FINE Trial — thanks a £million? MERGE

Heralded as offering a "promising new treatment" for people with severe ME, the FINE (Fatigue Intervention by Nurses Evaluation) Trial is presently recruiting staff and will report its conclusions in 2008 or even later. Costing £1,147,000, the trial is funded by the UK's Medical Research Council with a grant to Dr Alison Wearden, a psychologist based in the Department of Psychology, University of Manchester, and colleagues in Liverpool (Department of Psychiatry) and Manchester (Department of Psychiatry). In the preliminary supporting documentation, the FINE Trial is a described as a "randomised controlled trial of nurse-led, self-help treatment for patients in primary care... Referred patients will be randomly allocated to one of three treatment groups: (a) nurse-led self-help, (b) supportive listening or (c) GP treatment as usual." Patients will be visited in their own homes, and before "treatment" commences qualitative interviews will be conducted to explore"patient views on illness causation, beliefs about chronic fatigue, expectations of intervention, and previous experience of treatment and doctor-patient relationships". At the same time, the patients' GPs will be asked about their experiences of and attitudes towards patients with ME. After 20 weeks of "treatment", patients will be assessed for a variety of outcomes, and again after one year.

What is the "promising new treatment" on offer to the severely-ill patients? Called "nurse-led self-help" or "pragmatic rehabilitation", the approach "is designed to increase activity and challenge dysfunctional illness beliefs" (Powell et al, 1999), and includes elements of the cognitive behavioural and graded exercise therapy championed by those psychiatrists and psychologists who promote the "biopsychosocial" model of ME. The basis of this model is that "once an illness has started, its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process" (CMO Report 2002). Pragmatic rehabilitation, we are told, will help patients to understand their symptoms and, jointly with the nurse, agree a programme of rehabilitation. In support of its usefulness for the most severely ill patients, a single report in the scientific literature (Powell et al, 1999) describes two wheelchair-bound patients who had dramatic improvements in health following the pragmatic rehabilitation regimen now being rolled out to larger groups of patients as a full-scale MRC-funded trial. (Two other seemingly relevant reports in the scientific literature are, in fact, small pilot studies that refer to inpatient treatments within psychiatric wards, vis, Chalder et al 1996 and Essame et al 1998.)

This treatment is not new and hardly promising on the basis of two case reports. But will some people benefit and report improvement of a sort? Well, probably — given that the quality of life of us all (well or unwell) can be improved by changing some of our beliefs and coping behaviour, and increasing our activity levels. But as the authors of the new Canadian definition of CFS/ME make clear, the question is whether such treatments (generally recognised not to be a cure for patients' physical illnesses or suitable for everyone with ME) add anything to what is available in the general medical setting, and hence whether the taxpayer-spend of £1,147,000 (including £411,000 in NHS costs, very useful for oiling the wheels of academic departments) is value for money. And furthermore, there are considerable doubts about whether the trial will address the central problem of ME.

For instance, will each severely-ill person on the FINE trial be given a comprehensive medical assessment to identify somatic (physical) symptoms and signs? Autonomic disturbances, seizures, frank muscle weakness, neuroendocrine disturbances (like sweating episodes), recurrent flu-like symptoms — will they be recorded over the 70 weeks? Symptoms like musculoskeletal pain, neurocognitive problems and sleep dysfunction — will they be comprehensively assessed? Will patients receive treatment for any of these? Or will these signs and symptoms of ME be ignored while the patients' beliefs are explored by nurses steeped in the biopsychosocial culture of their paymasters?



In vivo magnetic resonance spectroscopy in chronic fatigue syndrome. Chaudhuri A, Behan

‘Research data on magnetic resonance spectroscopy (MRS) of muscles and brain in CFS patients suggest a cellular metabolic abnormality in some cases. 31P MRS of skeletal muscles in a subset of patients indicate early intracellular acidosis in the exercising muscles. 1H MRS of the regional brain areas in CFS have shown increased peaks of choline derived from the cell membrane phospholipids. Cell membrane oxidative stress may offer a common explanation for the observed MRS changes in the muscles and brain of CFS patients and this may have important therapeutic implications. As a research tool, MRS may be used as an objective outcome measure in the intervention studies. In addition, regional brain 1H MRS has the potential for wider use to substantiate a clinical diagnosis of CFS from … unexplained chronic fatigue.’



Specific oxidative alterations in vastus lateralis muscle of patients with the diagnosis of chronic fatigue syndrome Stefania Fulle (a), Patrizia Mecocci (b), Giorgio Fano (c), Iacopo Vecchiet (d), Alba Vecchini (e), Delia Racciotti (d), Antonio Cherubini (b), Eligio Pizzigallo (d), Leonardo Vecchiet (c), Umberto Senin (b) and M. Flint Beal (f).

From these results we hypothesize that in CFS there is oxidative stress in muscle, which results in an increase in antioxidant defenses. Furthermore, in muscle membranes, fluidity and fatty acid composition are significantly different in specimens from CFS patients as compared to controls and to patients suffering from fibromyalgia.

These data support an organic origin of CFS, in which muscle suffers oxidative damage.


Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome.

‘The authors attempted to confirm the consistent report by patients with the CFS of delay in recovery of peripheral muscle function after exercise. They tested the quadriceps muscle group of 10 patients and 10 controls. Recovery was prolonged in the patient group, with a significant difference between the two groups after exercise and after 24 hours. These findings support the clinical complaint of delayed recovery after exercise in patients with CFS.’


Concerns Regarding Exercise

Despite deep divisions within the ‘CFS/ME Working Group’ regarding graded exercise, the published report to the Chief Medical Officer endorsed this approach as a strategy “potentially beneficial in modifying the illness”.[1] The Cross Party Group on ME has serious concerns regarding this recommendation, and the way in which it has been interpreted. C BT can be a helpful management technique, as acknowledged in other illnesses e.g. cancer, but there are concerns that, in relation to M.E., it has come to mean motivating people to participate in ‘Graded Exercise type’ programmes. Also, CBT does seem, uniquely for M.E./CFS, to be being suggested as a ‘treatment’ and regarded as sufficient in itself, rather than an accessory to specific treatment of the illness and specific symptoms.


Time to put the exercise cure to rest? by Dr Elizabeth Dowsett

There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) 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 1. And, on follow up over decades (rather than weeks or months), the average person so disabled is found to be functioning (as a student, employee or parent for example) dangerously near their [activity] limits. The prescription of increasing exercise is such a situation (or in the early stage of the illness when the patient desperately needs rest) can only be counter-productive. 

Section 3: part 2

This section is so large it has been divided into two parts.

To read parts 1 and 2 together, please see the Word or PDF version of this paper, which can be downloaded on this page.

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

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