Observations on the Chief Medical Officer's Working Group on CFS / ME
(from ForT- author unknown)
The announcement by the then CMO (Sir Kenneth Caiman) in July 1998 that a Working Group was to be set up to look at CFS / ME was greeted by patients' organisations with acclaim; patients themselves (and their long-suffering families) were pleased and grateful that at last, someone was going to take them seriously. Far too many of them seem to be pinning their hopes on the outcome of the CMO's Working Group, in the belief that the reality and devastation and nature of CFS / ME will finally be acknowledged and officially addressed.
Poor, misled creatures
Why? Because the whole thing is a stitch-up.
Why? Because the CMO's Working Group is not independent it is funded by The Linbury Trust (Sainsbury), who have publicly and financially supported psychiatrists of the Wessely School for years to the tune of over £4 million (one asks why they support the psychiatric view in the face of so much published evidence which makes a nonsense of such a view, but one is always met by deafening silence).
If it is not funding the work of the CMOs' Working Group, does the Department of Health have any jurisdiction over it, or has it entirely relinquished its moral responsibility in a financial sell-out?
People failed to realise that the terms of reference of the CMO's Working Group were drawn extremely narrowly (clever politics here); those terms of reference are to look only at treatment and management of CFS / ME. They do not include looking for causation; they do not include addressing the issue of sub-groups (eg. the truly harrowing plight of the very severely and chronically affected). The literature repeatedly expresses concern that such very sick people are not included in published trials and studies, as they are far too sick to get to centres where such studies are undertaken (good science, this, to exclude the sickest sufferers, because we don't want them to screw up the results).
Question: if no-one is allowed to consider the devastating nature of the condition (and the suffering to which it gives rise) or to try to identify the cause, on what rational grounds can the CMO's Working Group be identifying the best treatment?
The reality is that there /s no treatment, because the cause remains unknown.
Unless the cause is first established, there can be no treatment, so what is the point of looking at papers about a "treatment" which has not been validated?
Consideration of such issues seem to have escaped the convenors of the CMO's Working Group, because the terms of reference are to look at the published papers on treatment,
Clever, that. Who has flooded the medical literature with papers about the amazing efficacy of psychotherapy, especially his own version of graded exercise and cognitive behavioural therapy?
Oh, it's Simon Wessely.
Apart from the vast oceans of his and colleagues' papers claiming success for GA / CBT in "curing" the "dysfunctional beliefs" of patients who only "think" they have a non-existent illness called "ME", there are few other treatment regimes in the literature-There are a very few studies looking at GLA (evening primrose oil), dietary modulation to exclude the opioid precursors such as wheat and cow's milk, injections of magnesium, and ampligen, none of which has been effective or replicated.
So what are we left with in the literature about "treatment"?
Of course. We are left with papers spawned out (in truly awe-inspiring and voluminous proliferation) by the Wessely School on GA / CBT and on how successful this treatment modality is in curing this non-existent disorder.
How neat. How convenient for everyone. No-one needs even to think about searching for causes
It must be remembered that The Linbury Trust produced a "CFS Research Portfolio" (brought out to coincide with the announcement of the CMO's Working Group) edited by former editor of the Lancet Robin Fox and published by the Royal Society of Medicine, in which they categorically state that searching for causes of CFS / ME is not only futile but may prevent recovery. Really? What happened to evidence-based medicine?
So the sheer volume of papers from the Wessely School will ensure that the status quo is safely maintained, and that the findings and only possible outcome of the CMO's Working Group will be that there is only one treatment, and that it is GA / CBT (with a few anti-depressants thrown in for company profits).
But there's more.
The CMO's Working Group has farmed out the "systematic review of the literature" to a team at The NHS Centre for Reviews and Dissemination based at the University of York. Their website is http://www.york.ac.uk/inst/crd/cfs.htm
For a kick-off, Rachel Richardson (the research fellow on this team) does not even get the terminology right, and she does not have the courtesy to reveal her discipline, referring to herself only as "Research Fellow" Interesting, that.
What we do know, however, is the membership of this review team. It consists of five women, not one of whom has a medical degree. Have they any experience in clinical medicine? Do they know anything about the disciplines most closely related to CFS / ME, especially neurology, immunology or the neurosciences? Without such knowledge and experience, how can they asses the medical efficacy of unproven "treatment" for a serious neurological condition?
It has to be remembered that the only people who claim such benefit for GA / CBT are members of the Wessely School. Researchers in both Australia and the USA have tried to replicate Wessely's findings and failed. Will the review team even be aware of this?
Their names are
Dr Anne-Marie Bagnall (not a medical doctor), Rachel Richardson, Dr Amanda Sowden (not a medical doctor), Penny Whiting and Kath Wright.
This review team has already started work "on the review evaluating the effectiveness of interventions used in the treatment / management of chronic fatigue syndrome / myalgic encephalitis (sic) in adults and children".
Fear not we need not be concerned. All is well. The review team is fortunate enough to have assisting them an expert panel. Who are the key members of this expert panel?
Oh, of course - we should have guessed. One of them is Simon Wessely
Oh, also paediatric psychiatrist Harvey Marcovitch the very same Harvey Marcovitch who had a swipe at the BBC Panorama programme which exposed the appalling and barbaric psychiatric treatment of sick children with ME and who sprang to the defence of the discredited Professor David Southall (the subject of the Griffiths enquiry, who promotes the view that parents of children with ME have Munchausen's Syndrome by Proxy and are themselves causing their children to be ill). Marcovitch wrote in the BMJ that it was time the medical profession hit back at those who are "vilifying our colleagues".
Nice one. We all know where he is coming from.
Oh, also Chris Clarke. Who? Chris Clarke. You know the new Chief Executive of Action for ME. The one who has been in post for only a few weeks, and who is apparently keen to make a name for himself. What does he know about the CFS / ME literature (or come to that, what does he know about the illness itself?) He has absolutely no experience of CFS / ME, or of assessing the validity of psychiatric trials. He has been a Health Service manager in both the statutory and voluntary sectors but this affords him no experience or expertise on which to draw in order to make any useful contribution to a systematic review of published papers on the treatment and management of CFS/ME.
Others on this advisory panel which is tasked with assisting the women on the systematic review team are
Dr Alan House from Leeds University. Anyone want to hazard a guess about his suitability or clinical background?
Aileen Macintosh (the one who sends back correspondence addressed to her) Jill Moss (from the childrens' group)
Professor Tony Pinching. To his credit, it was Pinching who at the last meeting of the CMO's Working Group on 24th May 2000 did his best to ensure that recommendations about the non-addressing of the major issues of aetiology and seriousness of CFS / ME must be highlighted and must be put before the CMO, only to told by the Chairman (Professor Alien Hutchinson) that there would not be room. Come again? That's right. Hutchinson said there would not be room to include such issues, and in any case, those issues were not within the remit laid down by the CMO. End of story.
Question: why have those with years of experience and expert knowledge been so persistently excluded from any
prominent advisory role?
Question: does any single one of the review team have the experience or first hand knowledge to realise that so many of Wessely's papers on "treatment" are methodologically flawed, or to recognise on what precise grounds they are flawed?
If not, then how can they accurately assess the literature which claims such benefit from unproven and unreplicated studies?
Would they even be aware that Wessely is mostly looking at those with a psychiatric diagnosis (usually somatisers), and not at cases of strictly defined CFS/ME?
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.
If those who have been tasked to carry out this "systematic review" of the literature on the "treatment" of CFS / ME do not understand all this, then they will be failing in their duty and ought to be held publicly accountable.
There are those who will see to it that the review team are publicly accountable, through the Courts if necessary.
30th May 2000.
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