I am concerned that despite an alleged shortage of funding, the publication of misleading papers compiled by certain UK psychiatrists, well known for their bias, continues unabated, and more are in the pipeline it seems. There are few challenges and almost invariably no corrections. The paper on MCS by Reid is an example (for details see below).
This situation has been amply illustrated in the Review document 'Denigration By Design?' - it has gone on for years and the resulting cumulative effects almost certainly account for the way in which ME/CFS patients are being treated not only by medical practitioners, but also with regard to continued benefit problems, which so many experience.
a) Reid S et al: Chronic Fatigue Syndrome: Clin Evidence, 1999:2:397-405; and extracts from "Clinical Evidence" Chronic fatigue Syndrome; BMJ;2000;320:292-96.
Comments: RCTs are increasingly recognized as not being the most useful method of assessing treatments for ME/CFS patients, due to great individual differences and varying aetiologies... In view of the fact that most funding in recent years was awarded to authors of this review or to their associates, the conclusions are hardly surprising, and this is endorsed by the high proportion of self-references. As usual, the most severely affected patients were not included In the cited trials, which inevitably produces a biased result. It is to their credit that the authors acknowledge a significant number of adverse reactions in some clinical trials, especially those using anti- depressants and immunotheraples, even though the cited rates seem low. One is left with the impression that allegedly successfully treated CFS patients were unable to devise strategies for their own recovery and that without the intervention of psychiatrists, they would be lured into potentially harmful prolonged rest. I find it difficult to reconcile this impression with documented facts that many ME/CFS patients were very active, highly motivated and often very intelligent, who are unlikely to become imbecilic overnight. Finally, it must be stated very clearly that patients do not complain about or revolt against remedies which WORK - if GE + CBT are as beneficial as they are reported to be, then surely everyone would be clamouring for these treatments instead of having to be coerced into them.
Comments: He cites GE Simon et al's 1990 study, without stating that this concerned workers suffering ill health due to exposure to toxic substances in their workplace at the aircraft manufacturers Boeing, who were diagnosed as suffering from psychological problems, somatization disorders or misguided environmental awareness by psychiatrists at the University of Washington, Seattle. Boeing is the largest benefactor of this University, with a particularly good relationship to the psychiatric department. However, these workers took their case to the highest court in that state, where their claim was upheld and this enabled them to sue Boeing for compensation (relevant references are available). Reid also omits to say that MCS is officially recognized by the FDA, that a Consensus Document on MCS was compiled and signed by many experts in this field (Arch Env health, May/June, 1999;54;3:147-49), and NA Ashford et al's landmark 2nd edition of 'Chemical Exposures: Low Levels and High Stakes' (1998) is ignored. Instead he refers to the highly criticized 1992 Allergy Report prepared by the Royal College of Physicians.
Inevitably he concludes that existing evidence does not favour an immunological or neurological basis, but psychological factors were repeatedly documented.
In this purported review of the literature on a variety of syndromes, ie. IBS, CFS, PMT, FMS, Temporomandipular Joint Pain, Tension Headache, Atypical Chest Pain, MCS and Globus Hysterictis, the authors state that the similarities in all syndromes are that they are functional, occurring predominantly In women, and the authors claim that taken together the similarities outweigh the differences. Hence they propose to group all these together under one umbrella, defining them as Functional Somatic Syndromes. They suggest that the existence of speciflc somatic syndromes is largely an artefact of medical specialization and they urge that the acceptance of distinct syndromes as defined in the medical literature should be challenged. They state they are taking active steps to achieve this.
Comments :The proposals of these psychiatrists are disturbing enough, sufficiently so to have prompted Jane Colby and Dr Charles Shepherd, supported by Dr Ellen Goudsmit, as well as Professor Leonard Jason et al (USA), to send in well argued objections, which were published in the Lancet on 11/12/1999, and which were responded to with further arguments by Wessely et al in the same Issue.
Alas, this scenario, along with Reid's article on MCS above could have far wider implications than most people realize. Apart from the obvious outcome of eliminating patients' entitlement to higher rates of benefits, it could relate to an important document known as the Convention on Human Rights and Biomedicine, or the Bioethical Convention, a highly complex legal document, the original draft of which was signed by 36 countries, including Britain, in Strasbourg in November, 1996. The final version was ready for signature in early April 1997, when 20 countries signed it, but not Britain, due to the general elections - the incoming new government was supposed to do so. What appears to be happening is that various aspects of this Convention are being implemented 'piecemeal' in the UK, enforced treatment of patients suffering from certain personality disorders being one example.
What this benign sounding document actually provides for are sweeping relaxations of informed consent to medical treatments, in certain circumstances, which apply particularly to the following groups of people: those who are deemed to be mentally ill and unable to give informed consent, those who suffer from diseases for which at present there is no known cure, children, and people needing emergency treatments.
If this group of UK psychiatrists succeed in changing the present classification of M.E. in ICD 10 as a neurological disease to a psychiatric status and if they succeed in grouping together these 'medically unexplained syndromes' and get them classified as Functional Somatic Syndromes, there is an even chance that ME/CFS patients will be deemed to qualify for treatment provided for in the above Convention. To put it plainly: ME/CFS patients and others may be in danger of becoming guinea-pigs for future drug trials and other medical procedures, without being consulted or advised of these facts.
It appears that a most important closed 'State of the Science' meeting on CFS was arranged by the National Institute of health (NIH), scheduled for 6/7.2.2000 by the new CFS Director, Dr David Morens, allegedly an Epidemiologist who believes CFS does not exist and who has taken over from Professor Stephen Straus. At such meetings, key researchers in the field discuss what is known about the disease in question and which direction future research should take. Details on speakers and when this meeting would take place were withheld from interested US parties and from the CFSCC (a federally chartered meeting for CFS) until recently, when it emerged that Professors Simon Wessely, Mike Sharpe and Stephen Straus had been invited as key speakers. By that time it was too late for key researchers like Professor Anthony Komaroff to attend.
Shocked about these revelations, the CFIDS Association of America and many other State and National Groups registered the strongest possible protest with the US government and requested that the meeting be declassified from a 'State of the Science' category to an ordinary consultation on CFS, where now also Professor Nancy Klimas, Dr William Reeves and other US experts would speak. The declassified meeting is now also open to representatives from patient groups.
There is a suggestion that CFS will be moved from the NIH Division responsible for Allergies and infectious Diseases (NIAID) to the main building of the NIH, on the grounds that CFS requires a multidisciplinary approach. Furthermore there is a possibility that in future CFS will come under the jurisdiction of the Mental Health Division of the NIH (NIMH).
To begin remedying the effects of a decade of biased and misleading psychiatrically based published papers, the main UK patient organizations should be asked to contribute more positively by addressing the true nature of ME/CFS and play a much more active role in notifying appropriate government and other authorities of known and reported physical problems which their members have, following the example set by the CFIDS Association of America.
It is an untenable situation that parents of children with severe ME/CFS are accused of causing the disease, eg. as in MSBP [Munchhausens By Proxy]. In the adult ME/CFS population there are countless cases of mis-attribution (eg. the case of a woman being given a Rubella vaccine within days of giving birth and developing severe CFS, attributed to Post-Natal Depression etc.; years later she is still severely ill; the husband had to give up work; there is a long, drawn-out legal battle; and the couple is in great distress. Many other cases exist.) Psychiatrists in particular should address the true nature of ME/CFS as an illness frequently following infections, sometimes precipitated by vaccines or exposure to toxic environmental substances, preceded by similar predisposing risk factors. Psychological factors are just one aspect amongst all these, and by no means the most significant.
The central Issue, ie. whether the consistently selective, frequently misleading and manipulative literature produced by Professor Wessely and his colleagues amounts to scientific misconduct, is not addressed by either of the two UK Government Departments. Which begs the question: Who is responsible for concludng that information considered by the DOH and DSS is balanced, correct and fair?
The usefulness of continued publication of biased and flawed papers emanating from the psychiatric lobby should be questioned.
We need to have access to a broader perspective on ME/CFS by way of comprehensive reports on recent conferences, unbiased reviews of the international literature and liason with the All Party Parliamentary Group on MF/CFS. In the USA, the situation concerning the NIH Consultation meeting on CFS is changing day by day; the Americans are very concerned and anxious to hear the outcome of this meeting.
In summary, we need to find a way of bringing some realism and a goodly measure of common sense to the bizarre situation, which has developed over some years now, where ME/CFS patients are deemed unable to judge what helps them to recover and what is harmful. If patients with severe food and chemical intolerances for instance say that treatments they get at the Breakspear Hospital or similar establishments help, but antidepressants, antipsychotic drugs, GE + CBT do not (as many patients do), on what evidence-based grounds can these psychiatrists or GPs dispute such assertions? ...
Honest and open debates are what we need in the dilemma which so many ME/CFS patients face, not ever more misleading articles designed to preserve the status quo. Finally: I fully support Dr Dowsett's and Professor Derek Pheby's call for a government funded epidemiological survey on ME/CFS, as do Professors Alberti and Hutchinson as well as the CMO, Sir Liam Donaldson. I would like to see this accompanied or followed by a Vulnerability Study, which looks at a range of possible predisposing risk factors, to help in identifying those which render people more likely to develop these profoundly disabling diseases. This would also take us a step nearer to preventing some future cases.
Please consider the issues raised carefully. If you require any further information, please do not hesitate to contact me.
Yours Sincerely,
Doris M Jones.