ME Exists: True or False?
Eileen Marshall Margaret Williams 18th August 2006
“If you repeat something often enough, you can perhaps make people believe it. What you cannot do is turn it from being false into being true”.
This well-known adage was quoted by Robert Rowthorn in the Sunday Telegraph on 2nd July 2006 in an article exposing as false yet another claim by the UK Blair Government.
This adage being true, it ought to be the case that no matter how often the psychiatric and medical insurance lobbies (and the Governments with whom they connive) continue to deny the published scientific evidence about ME/CFS and to promote their own model of behavioural illness, their doctrine remains false.
And false it certainly is: experienced biomedical researchers regard ME/CFS as a multi-system autoimmune overlap disorder, not a mental disorder, and give it its place between lupus, diabetes type 1 and MS, referring to it as “AFS” which stands for autoimmune fatigue syndrome (see also Chronic Fatigue Syndrome: A Biological Approach edited by Patrick Englebienne and Kenny de Meirleir; pp 291; CRC Press 2002).
False though the psychiatric paradigm about the nature of ME/CFS is, it nevertheless pervades and indoctrinates all levels of society, especially medicine, social services, the judiciary and, in recent years, some of the ME/CFS patients’ support charities in the UK, with knock-on effects on sufferers and their families. The recent campaign by Action for ME (AfME) to engage Members of Parliament in a candle-lit vigil to save the Government “CFS” Centres by securing more funding for those Centres would seem to be a case in point, given that the Centres support the psychiatric fallacy about the nature of ME/CFS by imposing compulsory and often inappropriate behavioural modification strategies such as cognitive behavioural therapy and graded exercise regimes, even though the evidence continues to mount that these Centres are causing actual harm to unknown numbers of those they are supposed to be supporting (see Research into ME [RiME] information on Co-Cure, 18th August 2006: “RiME latest – NHS Clinics Condemned – Part 4” and see also www.erythos.com/RiME ).
As solicitor John Batt wrote in The Times Law Section on 11th July 2006: “False allegation ruins lives….doctors are always hostage to the knowledge that lurks in the future…it is not the legal system that is causing miscarriages of justice; it is medical opinions that are not as sound as they appear to be. If (a doctor) cannot back (his) opinion with research and laboratory results, the judge should openly rule that the opinion may be worthless. He should not allow statements like: ‘this theory is well-established’ or ‘doctors have known this for years’ ”.
Where is the evidence that supports allegations by these “Wessely School” psychiatrists (some of whom act as Government advisors and others as advisors to the medical insurance industry) that people benefit from “adopting the sick-role” conferred by a label of ME/CFS? There is no such evidence. There is, however, abundant published evidence of the extensive losses, loneliness and extreme suffering endured by those with ME/CFS, as well as plentiful evidence of the extra burden forced on them in their fight for survival, both medical and financial.
Why is the existing evidence of biomedical anomalies in ME/CFS continually ignored by “Wessely School” psychiatrists, who claim that the only disorders that they will “accept” are those supported by “evidence-based” medicine? And yet their “de-conditioning” model of ME/CFS is not evidence-based, nor can it ever be so: it is a hypothesis that cannot be tested, let alone proven, which contrasts with the biomedical model of ME/CFS that is supported by respected literature of solid scientific evidence.
The psychiatrists involved with ME/CFS, however, have assumed control of the ME/CFS situation and they continue to reject the substantial biomedical evidence of serious organic pathology despite the fact that their own assumptions about ME/CFS have never been validated. The reaction of the UK authorities to the “Wessely School” view of ME/CFS seems grotesquely to reflect the South African government’s view of AIDS, ie. it can be cured by garlic and lemon juice.
Is it because of the far-ranging influence of “Wessely School” psychiatrists that there was such deceit and misappropriation of funds surrounding ME/CFS biomedical research in the US?
Is it because of the influence of “Wessely School” psychiatrists that funding applications to the UK MRC for biomedical research projects in ME/CFS are rejected in favour of massive and repeated funding for those psychiatrists? It is certainly true that Wessely et al have made ME/CFS unfashionable to the elite scientific community, who now see ME/CFS as a behavioural illness.
Is it because of the influence of “Wessely School” psychiatrsists that both the UK Government and the US Centres for Disease Control (CDC) continue to deny appropriate and necessary investigations for those with ME/CFS? For example, as in the UK, the CDC continues to deny the need for SPECT scans that researchers have shown to be diagnostic in ME/CFS: “Some (ME)CFS researchers have observed apparent differences in the cranial blood flow between patients and controls (but) imaging tests should not be performed as a diagnostic technique for (ME)CFS” (see the post on 17th August 2006 on Co-Cure by Stephen Du Pre: “CDC’s Continued State of Denial about ME/CFS”).
It was in 1995 that nuclear imaging expert Dr Durval Costa published his brain-stem SPECT imaging paper which clearly demonstrated highly significant patterns of hypo-perfusion in ME/CFS patients that were not evident in those with major depression or in age and gender matched controls. Despite countless requests for referrals to him by desperate patients, these were consistently thwarted by NHS consultants working in “CFS” clinics, including to our certain knowledge by Professor Tony Pinching (then at St Bartholomew’s Hospital in London, now medical adviser to AfME) who refused outright to allow such referrals. Costa eventually gave up in the UK and moved to Portugal, where he is now Professor of Nuclear Medicine. Why have these important findings been buried for the last eleven years?
If the psychiatric lobby is 100% convinced that they, and they alone, are right that ME/CFS is not a serious multi-system organic disorder, why are they so opposed to biomedical research that, according to their own beliefs, would be negative, thus proving them to be right after all? Or is it simply that the psychiatrists want all the available research money for themselves?
It is a problem that is unlikely to be solved until there is a workable case definition against which patients need to be clinically examined and categorised correctly, and the establishing of such a case definition is the key to this whole argument.
Why do “Wessely School” psychiatrists not encourage research into the underlying cause of ME/CFS as any true scientist would? Why instead do they deny and denigrate instead of investigating and supporting patients? It is worth recalling that before the existence of diagnostic tests like MRI in MS and EEG in epilepsy and the discovery of dopaminergic pathways in Parkinsons, sufferers from these disorders were treated abysmally, so the diversion of funds for research that would address the aetiology of ME/CFS has historical precedence.
Is the refusal to fund biomedical research simply a case of wishing to curtail care costs and of protecting insurance company profits, or could it be that those who are unproductive but expensive to the State economy are expediently regarded as “useless eaters”? Many will be familiar with the book by Martha Gellhorn entitled “The Face of War” (first published in 1959 and re-published by Virago Press in 1986) about the Nuremberg Trials and the fact that the Nazis actually killed 275,000 of their own people who were old, feeble-minded or incurably ill, describing them as “useless eaters”.
If it is not a case of those with ME/CFS being “useless eaters”, is the unthinkable possible, namely that the remarkable (and documented) increase worldwide in incidence and prevalence of ME/CFS is in some way related to a bio-warfare agent such as borreliosis? The diagnostic picture would then be complicated by the overlap with diseases such as borreliosis, whose myriad symptoms are almost indistinguishable from ME/CFS.
Why, for example, was Elena Cook (the pseudonym adopted of necessity by the woman who was instrumental in organising the demonstration on 25th January 2006 outside Gresham College in London at Professor Simon Wessely’s lecture on the non-existence of Gulf War Syndrome) subsequently arrested and sectioned under the Mental Health Act, having received threats to her life and family? (see Co-Cure ACT: 17th July 2006: “Release of anti-Wessely lobbyist and lyme disease researcher from psychiatric detention [UK]”. Her statement about her arrest can be seen at http://www.lyme-rage.info/elena/statejun06.html).
Could this have had anything to do with Wessely’s known association with the US military or with the exposure of the apparent confirmation by the CDC that lyme borreliosis is indeed a biowarfare agent?
(see “US Government Admits Lyme Disease is a Bioweapon” online at http://www.indymedia.org.uk/en/2005/11/328067.html and see also “Borreliosis / Lyme & M.E. in the United Kingdom” at http://www.mesupport.bigstep.com/generic215.html ).
As noted by Aaron and Buchwald et al (J Gen Intern Med 2001:16(1):24-31), it is the case that chronically fatiguing illnesses are associated with high rates of many other clinical conditions that cannot be attributed solely to psychiatric illness, and that patients with fatiguing illnesses may present a complex clinical picture that poses diagnostic and management challenges. However, whilst they would not be included in a case definition, the following abnormalities have been regularly documented in patients with ME/CFS: whilst the direction of causality of the high burden of co-morbidity remains unproven, such co-morbidity gives the lie to the psychiatrists’ too-facile assertion that the greater the number of somatic symptoms, the greater the likelihood of somatoform illness.
Whilst correlation does not imply causality, it remains beyond reason that the existence of so many documented abnormalities in people with ME/CFS should simply be disregarded and denied, including the following:
The above list is by no means comprehensive but merely gives an overview of documented abnormalities seen in ME/CFS that can be accessed in the literature, as well as in the abstracts and reports of international Clinical and Research Conferences. Unfortunately not all are on MedLine. It is our intention to provide, with others, a comprehensive list of references for an article discussing the above abnormalities in ME/CFS to be submitted for publication.
By contrast, there is no credible evidence --- as distinct from belief and assertion --- of abnormal illness behaviour in authentic ME/CFS.
It is not known if, during the various stages of ME/CFS described by Cheney (for which see http://www.meactionuk.org.uk/consideration.htm) all patients with ME/CFS exhibit all the above mentioned abnormalities: this is unlikely to be known due to the prevailing dictum by dominant UK psychiatrists and their associates that it is neither “necessary nor appropriate” to investigate such patients other than by minimal screening (and if you don’t look, you certainly don’t find).
Instead, the UK policy is to compulsorily brain-wash those with ME/CFS into changing their rational belief that they are organically sick into the irrational belief that, once they “modify” their thinking, they are fit to work and to look after themselves.
Moreover, not only are no appropriate investigations to be performed on patients with ME/CFS, but those few NHS physicians who possess the integrity and courage to act in ME/CFS patients’ best interests and who go out of their way to help them are pilloried by their colleagues and in some instances are subjected to “disciplinary” proceedings following complaints to the General Medical Council by other doctors with known allegiance to the pharmaceutical and medical insurance industries; some have been threatened; some have been warned off, and some have had their licence to practice medicine restricted, with the possibility of their being struck off the medical register being very real. Some have been forced to resign; others have had their NHS clinics closed down, with their patients being transferred to psychiatrists.
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.