Vilified but Vindicated? Malcolm Hooper Eileen Marshall and Margaret Williams 29th April 2005
ME/ICD-CFS sufferers have for many years been unjustly subjected to assertions that they suffer not from an organic condition but from either depression or from somatisation disorder, both of these being primary psychiatric disorders. Such assertions have been promulgated mainly by adherents of the "Wessely School", so-named after its main protagonist Professor Simon Wessely from Guy’s, King’s and St Thomas’ School of Medicine and The Institute of Psychiatry in London.
However, a newly published 30 page review by Professor Leonard Jason et al from DePaul University, Chicago, exposes the lack of evidence for such assertions and makes it imperative that the currently advocated management regime propounded by Wessely et al that is supported by the Medical Research Council (MRC) and funded by Government be held to rigorous scrutiny, since this regime avoids the cardinal issues surrounding ME/ICD-CFS and leaves many very sick people with no hope of correct treatment or support.
It has been said that for democracy to work, an intelligent electorate is essential. Similarly, we would suggest that for ME activism to work, an informed and committed community is essential. It must surely be inescapable to most people in the UK ME community that it is singularly ill-advised to rely on either of the major adult ME charities to over-turn the status quo of psychiatric domination. Although we can, and do, supply the tools, it is up to individual members of the ME community to make effective use of those tools by insisting on dynamic action by Members of Parliament. We understand that one large ME support group in the UK actively denies its members knowledge of our articles. We submit that the deliberate suppression of publicly available information is not democracy but dictatorship and that such dictatorship can best be overcome by papers such as this latest one from Jason et al, to whom immeasurable gratitude is due.
Physical performance and prediction of 2-5A synthetase/RNase L antiviral pathway activity in patients with chronic fatigue syndrome. CR Snell, JM Vanness, DR Strayer, SR Stevens.
‘ The elevated RNase L group had a lower peak V02 and duration than the normal group, but a higher KPS. The results suggest that both exercise testing and the RNase L biomarker have potential to aid in the diagnosis of CFS.’
Vade MEcum Eileen Marshall and Margaret Williams, 28th June 2005
Two of the biggest problems currently besetting those with Myalgic Encephalomyelitis (ME) are (i) how to ensure that a physician accurately records the diverse and fluctuating symptomatology without dismissing such symptomatology as somatoform disorder and (ii) how to ensure that s/he understands that ME is not identical to "CFS/ME" as portrayed by psychiatrists of the "Wessely School", whose papers purporting to address ME (under the umbrella of "CFS") currently flood the literature but which bear little if any relationship to authentic ME.
Although they claim otherwise, "Wessely School" psychiatrists who advise Government and the medical insurance industry are not talking about authentic ME as listed in the WHO International Classification of Diseases (also listed as CFS, which is why it is sometimes referred to as ME/ICD-CFS) and as described by the late Dr Melvin Ramsay, but about chronic, medically unexplained tiredness that they unhelpfully refer to as "CFS/ME" and attribute to "aberrant illness belief".
As Hyde noted in 1992: "This failure to return to the literature haunts the very basis of their definitions" (The Clinical and Scientific Basis of ME/CFS. ed: BM Hyde; The Nightingale Press, Ottawa, Canada 1992), because "Wessely School" psychiatrists glibly claim that the features documented in the medical literature about early outbreaks of ME have altered and are no longer seen. This is untrue: what seems to be true is that the psychiatric lobby fails to look for such features or to include people with such symptomatology in their studies.
Respiratory symptoms and lung function testing in Chronic Fatigue Syndrome (CFS) patients P. De Becker, I. Campine, E. Van Steenberge, M. Noppen, A. Leysl, K. De Meirleir
‘CFS patients show a significant decrease in VC, possibly due to a significant increase of RV. The incidence of bronchial hyper-responsiveness in this group is also remarkably high. These observations can, at least partially, explain the respiratory symptoms in these patients.’
Evidence Based Psychiatry Eileen Marshall and Margaret Williams, 12th June 2005
Apart from identified gene abnormalities, other researchers have found abnormal immune activity in the pathology of exercise intolerance in ME/ICD-CFS that is consistent with a channelopathy involving oxidative stress and nitric oxide-related toxicity (Exercise capacity and immune function in male and female patients with chronic fatigue syndrome. Snell CR et al. In Vivo 2005:19(2):387-390).
Consistent with the above findings, Jammes et al have shown that in the ME/ICD-CFS patients studied, exercise gives rise to abnormally increased oxidative stress, resulting in patients being quite unable to respond physiologically, which could well account for the reduction in muscle power after exercise as reported by patients and as demonstrated by Paul et al (European Journal of Neurology 1999:6:63-69). The observed changes in markers of exercise induced oxidative stress are considered by the authors to be of real significance, and the paper confirms previous studies that point to positive correlations between muscle symptoms and measures of oxidative stress (Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise. Jammes Y et al. Journal of Internal Medicine 2005: 257: 299-310).
Clearly, those with ME/ICD-CFS are physically, not mentally, sick: it may be helpful to highlight once again what Professor Nancy Klimas from the University of Miami said in her AACFS in-coming Presidential address: "Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society" (Co-Cure 21st March 2005: http://www.co-cure.org).
Questions for the MRC Eileen Marshall and Margaret Williams, 18th June 2005
It cannot be repeated often enough that what Wessely School psychiatrists choose to call "CFS/ME" is not ME/ICD-CFS (a term used because ME is also known in the ICD as "CFS") and should not therefore be described in their studies and results as pertaining to ME/ICD-CFS. To do so is both a failure of their professional responsibilities to patients and a corruption of the scientific process.
The Story of Sophia and M.E. (from the Invest in M.E. website)
This is the heartbreaking story of Sophia, who through medical maltreatment and neglect, died of M.E. in 2005. This story illustrates all too tragically that M.E. is a serious neurological illness which is too often dismissed out of hand by doctors; sometimes with devastating consequences. An excerpt:
In July the professionals returned - as promised by the psychiatrist. The police ‘smashed the door down’ and Sophia was forcibly removed and taken to a locked room within a ’secure’ ward of the mental hospital. Despite the fact that she was bed-bound, she did not have even basic nursing care; her temperature, pulse and blood pressure (which had been 80/60), were never taken, her bed was never made, she was never washed, her pressure areas were never attended to and her room and bathroom were never cleaned. The nurse asked me to cook for her as the processed hospital food made her more ill. Sophia also had to deal with many nurses constantly going into her room and talking to her.
The psychiatrist made it quite clear to Sophia’s solicitor that he would not release Sophia. However, two weeks later, after a tribunal lasting 8 hours, she was released. It was too late; the damage had been done. Sophia relapsed, not to where she had been before, in spring 2003, but to a hell hole to which she had never been. She never recovered from their maltreatment. She never stood a chance.
The result of the inquest into the death of Sophia Mirza (on Invest in ME)
Inquest Implications by Eileen Marshall and Margaret Williams, 16 June 2006 [On the inquest into the death or Sophia Mirza.]
'General Medical Council’s "duties of a doctor" (2001) state that doctors must make the care of the patient their first concern and they must not ‘give or recommend to patients any investigation or treatment which (they) know is not in their best interests, nor withhold appropriate treatments’. This was acknowledged on 15th June 2006 by Dr Susan Benbow of The Royal College of Psychiatrists in the Daily Telegraph. The GMC stipulations are clear enough, so why then are sufferers from ME/CFS excluded from such protection?
There can be few people in the UK ME community who have not by now heard the results of the inquest into the tragic death from ME/CFS of 32 year-old Sophia Mirza, the beloved daughter of Criona Wilson from Brighton. Although severely sick with medically diagnosed ME/CFS, Sophia was abused by the doctors charged with her care by being wrongly sectioned under the Mental Health Act. '
Civilization: Another word for barbarism by Gurli Bagnall 17 June, 2006 [On the inquest into the death of M.E. sufferer Sophia Mirza.]
'At one time, sick people recuperated or convalesced. Now according to a group of megalomaniacal brain-washers and self-elected "law-makers", they are expected to rehabilitate along with murderers, rapists and thieves. The law which states that a person can only be sectioned if he is a danger to himself and/or others, has been swept aside by the above mentioned self-serving monsters masquerading as doctors.
Many will dismiss this as fanciful rubbish. After all, we live in civilized societies where such things could never happen. Unfortunately, they can and they do. It happened to the recently deceased Sophia Mirza.'
The Ean Proctor Story
In this "care", the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this "care" included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected.
Ean's Story by Barbara Proctor, Ean's mother
An excerpt: 'On Monday 23rd May, two social workers arrived on our doorstep and took Ean away under a "Place of Safety Order". We were not even allowed to go with Ean in the ambulance. Ean was to be in the joint care of Dr C, a psychiatrist, and Dr B, a paediatrician, at the local hospital.
During the whole time Ean was in care, we were allowed to see him for only half an hour a day. He was alone in a ward, could not move, could not speak, and had no way of getting help if he needed it. He had been told that he had been taken away from us because he was dying. Ean had to endure the most horrific mental torture. One day the psychiatrist told him "There is nothing wrong with you.... if you don't talk next week, you will be better off in Ballamona [the mental home]". Ean was so scared, he wet himself as he sat in his wheelchair. The Staff nurse would say to him that if he didn't speak or walk "He would grow old in his wheelchair, stay in the hospital for ever, and never go home again". One night, Rob and I found him very distressed in his wheelchair, all alone. He had wet himself, as no-one had asked him if he wanted to go to the toilet, at lunchtime... It was now 7.40 pm. Friday was the day Ean lived in dread of. This was the day the physiotherapists would take him off to the remedial pool.
Ean's case is also mentioned in:
To set the record straight about Ean Proctor from the Isle of Man By Eileen Marshall and Margaret Williams, 20th July, 2005
Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment by Professor Malcolm Hooper & Horace Reid, January 2006
Another Meadow? by Eileen Marshall and Margaret Williams, 16th July 2005
Considerations of some issues relating to the published views of Psychiatrists of the Wessely School in relation to their beliefs about the nature, cause and treatment of myalgic encephalomyelitis (ME) by Margaret Williams et al. 16th January 2003
Issues re the use of the Oxford criteria for the MRC "CFS" Trials by Margaret Williams, 20th June 2004
The Oxford criteria select patients who "present with a principal complaint of disabling fatigue of uncertain cause" and the stated aim of the Oxford meeting "was to seek agreement amongst research workers for the reporting of future studies of patients with chronic fatigue". This is not the case in ME/CFS, where patients experience post-exertional muscle fatigability which is not the same as "fatigue" or chronic tiredness (see JAMA, July 1990).
The Oxford criteria state "Specifically, we set out to agree on which patients should be included": given the stated aim of the Oxford criteria, this means the criteria set out to select patients with chronic fatigue, not ME, yet the MRC study purports to be studying those with "CFS/ME".
The Oxford criteria state: "The following guidelines were agreed. There are no clinical signs characteristic of the condition. Psychiatric disorders (including depressive illness, anxiety disorders and hyperventilation syndrome) are not necessarily reasons for exclusion".
Bearing in mind the requirement for compliance with the Oxford criteria, on what precise grounds can the MRC "CFS/ME" trials that will rely on the Oxford criteria for entry into the trials include those with ME, who may have an abundance of characteristic physical signs?
Complement activation in a model of chronic fatigue syndrome. Sorensen B, Streib JE, Strand M, Make B, Giclas PC, Fleshner M, Jones JF. Department of Pediatrics, National Jewish Medical and Research Center, Denver, CO, USA.
‘Exercise challenge induced significant increases of the complement split product C4a, but not C3a or C5a, at 6 hours after exercise only in the CFS group (P <.01), regardless of allergy status. Mean symptom scores were significantly increased after exercise through the use of a daily diary (P <.03) and a weekly diary (P <.01) for the CFS group only.’
‘Exercise challenge may be a valuable tool in the development of diagnostic criteria and tests for CFS.’
Considerations of some issues relating to the published views of Psychiatrists of the Wessely School in relation to their beliefs about the nature, cause and treatment of myalgic encephalomyelitis (ME) by Margaret Williams et al. 16th January 2003
Tactics used by psychiatrists of the "Wessely School"
In their apparent desire to suppress dissemination of research into ME which does not accord with their own narrowly-defined parameters of psychiatric illness, these psychiatrists consistently use the same tactics: it is fair to say that by virtue of the sheer volume of his published papers, Wessely himself must be considered the prime proponent.
By their repeated and therefore apparently deliberate ignoring, dismissing or trivialising of the research evidence with which they do not agree, Wessely and his own psychiatric lobby misinform and mislead readers, both medical and lay, thereby influencing and manipulating the perception of ME/CFS which their readers will acquire. Such intellectual manipulation is achieved by outright selectivity which might even amount to deception, and by biased use of the available published referenced literature on ME/CFS, a technique of which Wessely especially is master on the grand scale. By using this particular tactic, these psychiatrists fail to provide a balanced overview of the available published evidence on the state of knowledge about ME/CFS and thereby seem to be attempting to remove discourse on the nature of ME from the scientific arena, but good science thrives on open and honest scientific debate.
Margaret Williams reviews quotations from "SOMATIC MEDICINE ABUSES PSYCHIATRY - AND NEGLECTS CAUSAL RESEARCH" by Per Dalen, January 2003
UNUM Provident, Dr Michael Sharpe and Cognitive Behavioural Therapy: Information which the Medical Research Council might wish to consider. By Eileen Marshall and Margaret Williams, 12th April 2003
Given that research funds are said to be so limited (though it must not be forgotten that, quite apart from any recommendations of the MRC RAG, the sum of £2.6 million has passed its first MRC review and is well on the way to being awarded to psychiatrists Mike Sharpe (Edinburgh), Simon Wessely (King’s College, London) and Peter White (Bart’s, London) for a 4 year project looking at the use of CBT and graded exercise as effective treatment for people with ME/CFS) and particularly in view of the scathing criticism of the work of the MRC detailed in the recent Report of the House of Commons Science and Technology Select Committee (reference HC132), what is the MRC’s explanation for wishing to fund yet more psychosocial research on "CFS/ME" (an entity which does not officially exist either by definition or classification) in attempts to "strengthen" the small number of existing poor-quality studies on the alleged effectiveness of CBT in preference to funding soundly-based projects on the known biological abnormalities which underpin this disorder?
This is a question to which the MRC’s answer is over-due.
Time for a Reality Check at the UK Department of Health? By Margaret Williams, 3rd April 2004
From the above, it can be seen that the Department of Health and its associated official bodies are not "neutral" about ME/CFS as claimed on 31st March 2004 on behalf of Secretary of State Dr John Reid. What can be clearly seen is that either the Department of Health does not know what it is doing from one day to the next or, on no good evidence, it has allowed itself to be overly influenced by the psychiatric lobby. In my opinion, this makes their present unquestioning acceptance of the Wessely School’s expediently constructed psychiatric paradigm all the more culpable.
Sinister Science By Margaret Williams, 6th June 2004
On 3rd June 2004 Christine Hunter from Australia, whose daughter Alison died of severe ME aged just 19, was moved to ask where is the response of the worldwide ME community to the CDC International CFS Study Group's proposed refinement of the 1994 CFS criteria (published on 31st December 2003).
Observations on Professor Simon Wessely’s evidence to Lord Lloyd’s Public Inquiry into Gulf War Illnesses by Eileen Marshall and Margaret Williams, 28th August 2004
The question has to be asked --- should Wessely not be invited to explain his constant rejection of scientific biomarkers of serious physical illness (albeit too new to be as yet fully understood) and his assiduous replacement of them with his own psychiatric theories, when his theories can never be scientifically proven?
In his evidence to the Public Inquiry, Wessely’s overall objective seems to have been to reject and deflect any evidence that posed a threat to his own carefully constructed paradigm of a non-existent Gulf War Syndrome. Is it the case that his mission – or should one say his commission – has paid off handsomely?
It is perhaps worth mentioning that some time ago, Wessely apparently actually said to someone that he didn’t give a f--- about the Gulf War veterans: he had got his Chair and that was all that mattered.
Evidence-based Policy or Policy-based Evidence? by Professor Malcolm Hooper Eileen Marshall Margaret Williams, 20th November 2005
For example, in the American Family Physician, a peer-reviewed journal of the American Academy of Family Physicians (one of the largest groups of physicians in the US), the issue of 1st November 2005 (volume 72, no. 9) features CFS in the section Clinical Evidence Concise, this being a section that purports to provide evidence-based continuing medical education (CME) for the credits that are required to be obtained by all physicians to demonstrate their up-to-date medical knowledge; the articles in Clinical Evidence Concise purport to summarise current knowledge about a disorder and are used in best practice guidelines. In this particular issue, the topic is CFS and the authors are Steven Reid, Trudie Chalder, Anthony Cleare, Matthew Hotopf and Simon Wessely. What is so disturbing is that this is a re-run of the same authors? paper in the BMJ of January 2000, which was a shortened version of their original article in the second issue (December 1999) of Clinical Evidence, a BMJ Publishing Group Review. For these authors to publish it once again six years later demonstrates their total refusal to pay any heed to the wealth of biomedical evidence about ME/CFS that has been published in the intervening six years and would seem to be an abuse of the scientific process as well as an abuse of those with ME/CFS. As Jill McLaughlin noted on MEActionUK@yahoogroups.com : ‘This is what is being distributed to physicians all over the country who legitimately use evidence-based medicine to treat (or in this case, shall we say, mistreat) patients. We cannot always rail at doctors when this is the information that they are receiving in mainstream, peer-reviewed medical journals’.
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