PSYCHOSOCIAL TORTURE UK
The case of an ME/CFS child literally tortured by the UK psychiatrists.
I am writing to tell you what 1 know about Dr Trudie Chalder. She was consulted about the treatment of my son whilst he was in hospital. My son, who is 20 now, was admitted to a hospital in the District for rehabilitation with his ME. He was severely affected and bedbound and unable to care for himself. Since his discharge I have obtained the medical records and I can see that the consultant in charge wrote to Dr Simon Wessely for advice. I presume he referred the request to his colleague Dr Chalder. On my son's hospital file is a document, dated 07-03-01, a ‘Draft Action Plan Proposal following consultation with Trudie Chalder’ which I attach. I find the action plan shocking, and I was particularly disturbed by the penultimate paragraph which states:
"We expect (name) to protest as well as the activity causing him a lot of pain. This may result in screams. .. . it may feel punitive. "
Letter to the BMJ by Professor Malcolm Hooper, Eileen Marshall and Margaret Williams re: NICE 24th January 2006
Some of your readers may not be aware that in one particular disorder (ME/CFS - myalgic encephalomyelitis / chronic fatigue syndrome) for which NICE is currently compiling guidelines that are due early in 2007, on the influence of its advisors NICE is restricting itself to RCTs.
Most of the very few RCTs available have been carried out in the UK by those same NICE advisors themselves. Despite the fact that ME has been classified as a neurological disorder in the ICD since 1969 where it is also called CFS as well as PVFS (postviral fatigue syndrome) the NICE advisors believe it to be a behavioural disorder. For almost two decades they have disregarded the significant body of international evidence of its organic pathoaetiology. The lead proponent of the psychosocial model is Professor Simon Wessely of GKT School of Medicine.
We maintain it is important that none of the NICE guidelines should over-ride the empirical evidence, but in the case of ME/CFS, this is what is happening.
Such is the tide of public and professional concern about the misinformation that currently surrounds ME/CFS - which includes the Systematic Review carried out in October 2005 by Bagnall et al from the Centre for Reviews and Dissemination at York specifically to support the forthcoming NICE guidelines -- that a Parliamentary Inquiry chaired by Dr Ian Gibson MP has been established. Over 100 people, including patients and professionals, have already submitted evidence. Should you wish to access some of these submissions, they are available at http://www.25megroup.org
Problems and Solutions ? by Eileen Marshall and Margaret Williams, 23rd February 2005
Such is the influence of these psychiatrists that they have recently secured funding of £11.1 million (including £2.6 million from the MRC) to carry out more "research" in an attempt to legitimise their own beliefs that ME does not exist except as an aberrant belief in the mind of suggestible patients and naïve doctors and to demonstrate that "ME" is in reality "chronic, medically unexplained fatigue" and as such is a mental health problem.
It was in 1987 that the bid for the take-over of the severely incapacitating and discrete neurological disorder ME was effectively launched by certain psychiatrists and others on both sides of the Atlantic who were involved with the medical insurance industry; in this bid, the specific and WHO classified disorder was deliberately subsumed under the heterogeneous label of "CFS", which in turn was destined to become a catch-all label for the so-called "medically unexplained symptoms" that have been shown to be either virally or chemically induced and which were rapidly escalating out of control and becoming a serious financial threat not only to governments but also to the medical insurance industry.
Since 1987, the leitmotiv of the psychiatric literature on ME/ICD-CFS has been that patients who present with and suffer from a disorder that the psychiatrists and their corporate masters wish to eradicate are an "unjustified" and "undeserving" financial burden and that it is neither cost-effective, necessary nor appropriate to investigate their "non-existent" disorder. Instead, patients’ "dysfunctional thinking" and their "personality problems" must be managed by psychiatrists.
This project has been remarkably rewarding to these psychiatrists and their respective departments, since they have received many millions of pounds sterling, not only from private charities such as the Sainsbury (supermarket) Linbury Trust (who between 1991 and 1998 provided over £4 million) but also from the pharmaceutical industry, the medical insurance industry (with whom they are deeply involved), Government itself and the MRC.
Observations on the Chief Medical Officer's Working Group on CFS / ME on RiME
Do they know that most patients with severe CFS / ME have never been properly clinically examined in the first place? (Wessely's 1991 definition criteria do not require or permit evidence of neurological dysfunction to be taken into account).
It is all a question of selection and definition of cases studied and published.
No normal person is opposed in principle to any treatment which may offer even a glimmer of respite from such dreadful suffering and quality of life. If GA or CBT helped, desperate people would be queuing up in droves. It is because it does not help, and because it actually makes some people worse, that it is met with such opposition.
Patients know that what world expert on CFS / ME Dr Paul Cheney says is right -
"The most important thing about exercise is not to have them do aerobic exercise. I believe that even progressive aerobic exercise, especially in phase one and possibly in other phases is counterproductive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA".
This is the exact opposite of what Wessely et al believe: they urge patients to undergo exercise programmes, claiming that such programmes are beneficial and safe.
People have died after following such programmes, but because the evidence is "only anecdotal", it is ignored. Presumably no-one will heed it until there has been a replicated double-blind, placebo-controlled trial proving that, dear me, patients do die from inappropriate interventions.
The real point of all this is that anyone, whether medically qualified or not, who looks at the worldwide published evidence on the devastation caused by CFS / ME could not fail to realise that it is offensively inappropriate to suggest (let alone to forcibly promote) the notion that such catastrophic illness could be cured by (or amenable to) cognitive behavioural therapy. It is akin to suggesting that if an amputee will only let himself believe that he still has a.limb, he will cease to be disabled.
By churning out endless papers which promote CBT as "treatment" for CFS / ME, Wessely is trashing and trivialising terrible human suffering and by his influence, UK patients and physicians are being deprived of access to current knowledge.
INFORMATION ON MYALGIC ENCEPHALOMYELITIS (ME) FOR THE USE OF THE MEDICAL RESEARCH COUNCIL (MRC) AND THE NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE (NICE) Margaret Williams, 25th June 2004
Based on the evidence known to have been submitted to each group, there is widespread belief that the arbiters of both the Chief Medical Officer’s Working Group Report on "CFS/ME" of January 2002 and the MRC’s Research Strategy Plan for "CFS/ME" of May 2003 complied with a pre-determined policy not to clarify in their reports the World Health Organisation classification of ME / CFS as a neurological disorder. Not only was there no clarification, the report for the CMO contained specific misinformation, namely that "CFS and ME are classified as distinct illnesses in the World Health Organisation’s International Classification of Diseases" (CMO’s report, page 5, section1.4.1) and the MRC report stated that it relied upon the CMO’s report.
This was notable, since the WHO has classified ME as a neurological disorder since 1969 and in the current ICD (revision 10, 1992) the classification remains unambiguous, with ME/CFS being coded to G93.3 under Diseases of the Nervous System. Specifically, the G93.3 classification captures all listed terminologies for the disorder including ME, CFS and PVFS (postviral fatigue syndrome).
This ambivalence of classification in the CMO’s report and the MRC report was further exploited in 2000 by the deliberate inclusion of CFS/ME as a mental disorder in the Guide to Mental Health in Primary Care produced by the UK WHO Collaborating Centre at the Institute of Psychiatry where Professor Simon Wessely works.
It is not permitted under WHO rules to move a condition from one chapter of the ICD to another; moreover the WHO does not classify diseases by practice specialities: they are placed within a chapter according to pathophysiology. It fell to the Countess of Mar to obtain a retraction in the form of a letter dated 11th February 2004 from the Health Minister, Lord Warner, who confirmed that "the WHO, the WHO Collaborating Centre and the Department of Health have now agreed a position on the classification of CFS/ME. The UK accepts ICD-10 (and) the Department accepts that it might have been clearer to say that chronic fatigue syndrome is indexed to the neurology chapter and fatigues states to the mental health chapter".
This seemed clear enough, but a letter dated 31st March 2004 from Karen Nicolaysen in the Research and Development section of the Department of Health states that the Department is "neutral on this issue". Further, when the Countess of Mar asked the question "Whether, in the light of their clarification that ME/CFS is a neurological disease and not a psychiatric disorder, (Her Majesty’s Government) will forward this information to the chief executives of all NHS healthcare trusts", the reply on 20th April 2004 from Lord Warner was semantic: "The Department of Health did not say that ME/CFS is a neurological disease".
We are therefore left with confirmation that the Department of Health accepts that ME/CFS is a classified neurological disorder but that the Department does not accept that it is a neurological disorder.
