Important note: 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.
It is important that readers are aware that the HFME not only does not support the concept of 'ME/CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
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!'.
RiME Latest - 27th January 2005
The APPG Chair is now supporting the very psychiatric psychological modes of treatment which he condemned in 1999. He now says that GE and CBT do help people with ME (letter to severely affected person with ME Dec. 2003 , letter to relative of ME patient Aug. 2003 ): his source - The York Review:
The York Review did virtually all the work re. the CMO Report on 'CFS/ME' (The APPG Chair, incidentally, endorses the latter report and now uses the term 'CFS/ME'). The Review drew heavily on the work of Wessely, ('much of the database was provided by.. Wessely' - CMO, Sept. 1999) and like-minded colleagues and reported promising results for GE and CBT. Studies which challenged the role of GE and CBT were excluded; and there was not one study on severely affected people with ME.
Many of the references in The Royal Colleges Report which Mr Wright condemned 1999, written or co-authored by Wessely, correspond to those in the York Review which he cites; so do other references, written or co-authored by members of the 'Wessely School', eg Sharpe and Chalder.
What follows are the first three pages of RiME's Autumn 2004 Newsletter. We don't believe that the new NHS Centres will be in the interests of the vast majority with ME and urge people to protest now. Nor do we believe the prospective PACE and FINE Trials will benefit the vast majority who are severely affected with ME and urge people to make their protests now. Those who hold power at Westminster are doing all they can to close the door on genuine ME activists with legitimate concerns and grievances.
NHS 'CFS/ME' Centres Condemned (RiME Newsletter Autumn 2005)
Extracts from letters sent to West Kent Health Officials: Sevenoaks:
‘.... ME and Chronic fatigue are being lumped together.... The CFS Service says it will treat 'CFS/ME' with CBT sessions.. by a psychologist.. This appears to have all the hallmarks of the 'Wessely School of Psychiatrists'. There would appear to be an erroneous assumption that PWME per se have low self-esteem and motivation, and negative thoughts, and therefore become inactive... this is not the case....’
RiME - Research into Myalgic Encephalomyelitis Sample letters from January to June 2002
‘ME is a neurological illness, and is classified as such by the World Health Organisation, A substantial body of biomedical research (mostly carried out in the U.S.) Has demonstrated physical abnormalities in both the Central Nervous System and the Musculoskeletal, Cardiovascular, Immune and Endocrine systems.
A small number of studies have been earned out in the U.K., but in a piecemeal fashion and funded on a shoestring solely by charities and private donations It is utterly unrealistic to expect that small charities can find the sums of money required for serious research.
Despite this, the DOH has funded nothing other than psychological psychiatric research into this illness This is utterly inappropriate, as shown by the facts that despite millions of pounds of backing (mostly via the Linbury Trust), this approach has failed to advance knowledge of the cause and effective treatment of M.E.. On the contrary, it has done nothing other than falsely portray M.E. patients as suffering from a psychiatric disorder. This has resulted in inappropriate and harmful treatment, and denial of basic social security benefits. This has lead to great distress and unnecessary suffering for many patients already struggling under the terrible burden of illness.
This shameful situation should not be allowed to continue. M.E. is not a mental health issue, and it is therefore imperative that research into the biological causes of, and treatment for, M.E. is undertaken, and that psychological / psychiatric research should not be considered, by the MRC.
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.
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