THE MENTAL HEALTH MOVEMENT:
PERSECUTION OF PATIENTS?
A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE “WESSELY SCHOOL” IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK
Background Briefing for the House of Commons Select Health Committee
"No progress will be made unless everyone helps to publicise the facts contained in this document to all health professionals, to Members of Parliament and to the media"
Is it the case, as demonstrated in a TV documentary, that multi-national corporations and not governments now control the world? Are powerful and influential psychiatrists who work within the Mental Health Movement linked to the multi-national corporations that now dominate and control medical and research institutions and whose life-blood is profit? (Politics isn’t working: the End of Politics. Cambridge academic Noreena Hertz presented evidence that multi-national corporations are taking the place of elected governments. ITV Channel 4, 13th May 2001)
To the detriment of the sick, the deciding factor governing policies on medical research and on the management and treatment of patients is increasingly determined not by medical need but by economic considerations.
Document prepared for the Countess of Mar by Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, in collaboration with members of the ME community, Department of Life Sciences, University of Sunderland, SR2 7EE, UK
December 2003
Executive Summary
Brief Introduction
The Mental Health Movement
What is the problem?
What is the “Wessely School”?
The Opinion of a Queen’s Counsel
Are psychiatrists cruel?
Two illustrations of the implementation of Wessely School policy
The case of Ean Proctor
The case of Child X
The formal International Classification of ME by the World Health Organisation
Current Government policy concerning ME
What is ME and is it the same as CFS?
What is CFS?
Are both camps looking at the same disorder?
Some published views of the Wessely School on ME
Illustrations of Wessely’s influence over the national perception of ME
The UK Guide to Mental Health in Primary Care
The NHS Information Authority (NHSIA)
The House of Commons Library
The Official Secrets Act
The Media
The Medical Trade Journals
Disgraceful treatment of patients
A medical insurance company’s perception of ME
Illustrations of Wessely’s influence over the international perception of ME
The Australasian Report on CFS (2002)
A Canadian medico-legal reference book (2003)
Tactics of denial employed by Wessely School psychiatrists
Denial of the known and available evidence
Tactics of denial used in relation to ME/CFS
The Joint Royal Colleges’ Report on CFS (1996)
Comparisons with a contemporaneous American Report
The Chief Medical Officer’s Working Group Report on CFS/ME (2002)
Undeclared competing interests
The disability insurance industry
The published views of Professor Anthony Pinching
The York Systematic Review of the literature
The Medical Research Council Research Advisory Group on CFS/ME
Cognitive Behavioural Therapy and Graded Exercise
Report of the House of Commons Select Committee on Science and Technology on MRC
A chemical link?
Conclusions
Suggested Further Reading
Appendix I ---Quotations from the published works of Simon Wessely on ME/CFS
Appendix II –Quotations from the published works of Michael Sharpe on ME/CFS
Evidence is presented in this document to show that
THE MENTAL HEALTH MOVEMENT -- PERSECUTION OF PATIENTS?
NB. For brevity, not all references are cited in the text but all are available on request from the Countess of Mar, House of Lords, London SW1A 0PW
Brief Introduction
The matter for scrutiny by the Select Committee on Health concerns myalgic encephalomyelititis (ME) and is straightforward:
(i) is the Department of Health’s current and proposed policy on the management of patients with ME as provided and promoted by psychiatrists of the “Wessely School” (see below) harmful to patients and
(ii) are such patients being abused as a consequence of scientific misconduct?
ME has been formally classified by the World Health Organisation (WHO) in the International Classification of Diseases (ICD) as a neurological disorder since 1969, but psychiatrist Simon Wessely advises Government that the disorder does not exist other than as an “aberrant belief” that one has a disorder called ME. He refers to “chronic fatigue syndrome” (CFS) and asserts that CFS is a somatoform (psychiatric) disorder in which patients produce physical symptoms as a means of expressing emotional distress.
This is at variance with the WHO classification of the disorder: Chronic Fatigue Syndrome is listed in the ICD as a term by which ME is also known and according to the ICD, the two terms are synonymous, thus “CFS” does not represent a psychiatric disorder even though Wessely School psychiatrists assert that it does.
Of potential significance is the fact that American researchers have demonstrated that in ME/CFS, a particular pathway in the body which is affected by viruses can also be affected by chemicals and it is known that ME/CFS can be either virally or chemically induced (Interferon-induced proteins are elevated in blood samples of patients with chemically or virally induced chronic fatigue syndrome. Vojdani A; Lapp CW. Immunopharmacol Immunotoxicol 1999:21: (2):175-202)
For at least a decade, questions about possible scientific misconduct and flawed methodology by Dr (now Professor) Wessely and his group of co-psychiatrists have been raised and published in international medical journals but it is only relatively recently that his long-time involvement as medical adviser to commercial bodies having a vested interest in his publications on ME has been exposed (see below).
There is no question that many millions of pounds sterling are at stake and that the vested interest groups for whom these psychiatrists act as medical advisers would like to prevent insurance cover for ME patients (those with a psychiatric label are denied medical insurance cover); prevent disability payments to them; prevent successful liability lawsuits and maintain the supremacy of their industries (see below).
Increasingly, it is now “policy-makers” and Government advisers, not experienced clinicians, who determine how a disorder is classified and managed in the NHS: the determination of an illness classification and the provision of policy-driven “management” is a very profitable business.
“I suspect that psychiatry, if it is not careful, will eventually become most ridiculed over its adherence to one theme: that of ‘somatization’. Presently, sufferers of Myalgic Encephalitis (sic) (also called Chronic Fatigue Syndrome) are increasingly subject to medical negligence or even abuse because the huge body of international bio-medical evidence is ignored, especially in Britain, in favour of an unfortunately incomprehensible, incoherent and empirically inadequate theory.
“The categorization of an illness as being psychosomatic also means a further categorisation of an individual as ‘deviant’ rather than ‘ill’, so that they are denied sympathy, support, and even benefits they are entitled to. Categorised as ‘deviant’, the ill then suffer increasing social exclusion and material inequalities.
“The main problem with somatization theories is that they cannot be either proven or disproven and therefore are not very ‘scientific’ at all.
“In relation to ME/CFS at least, flawed, unsubstantiated theories have been uncritically adopted and treated as ‘fact’, even against the already substantial (and substantiated) body of bio-medical evidence which continues to grow.
“The material effects of such sloppy ‘science’ have had two main consequences for ME sufferers: firstly, the medical impairments of the illness have often been ignored and left untreated, and many sufferers therefore become severely disabled, their physical health absolutely devastated and their chances of a restoration to good health uncertain at best. Secondly, children in particular end up victims of institutional abuse (though this can happen to adults too). In the case of children, they may be forcibly removed from their concerned parents and subjected to draconian ‘treatments’ that could, quite easily, be termed abuse.
“The capacity for abuse of institutional power appears to have increased enormously, and this is becoming most evident in the fields of health care and particularly psychiatry. How such problems are addressed will determine the future of such disciplines, as far-reaching demands for justice from those who are faced with or survive such institutional abuse are inevitable, and this will lead to a critical review of medical practice, both from other disciplines, and society at large”.
The Mental Health Movement
In 21st century medicine the Mental Health Movement is politically correct and immensely powerful: it is backed by the giant chemical, pharmaceutical and insurance industries which are now the funders and controllers of both undergraduate and post-graduate medical education. In the UK, these industries have known links to research funding bodies such as the Medical Research Council (MRC) and as a result, a vast amount of public money is presently being provided in an attempt to strengthen the currently weak psychiatrically-driven research evidence that behaviour-modifying “chronic illness management strategies” are effective.
As a consequence, the MRC has decided not to fund urgently needed biomedical research into complex and devastating disorders such as myalgic encephalomyelitis (ME).
Also relevant may be the Council of Europe Strasbourg Convention on Human Rights and Biomedicine, which confers rights including provision for drug and other medical trials on human beings which in certain circumstances could be carried out without the individual’s consent: this applies to three groups of people in particular:
(i) those who are deemed to be mentally ill
(ii) those for whom no other known treatment is effective
(iii) children
The Convention (not yet ratified by the UK) specifically states that in certain situations, “general interests” will take precedence over those of the individual.
Concurrently, in the UK, proposals for the Reform of the Mental Health Act were drawn so widely that they would give psychiatrists far greater powers to enforce compulsory psychiatric treatment upon both adults and children: proposals included provision for psychiatrists to be able to drug people (including children against the wishes of their parents) if they have “any disability or disorder of the mind or brain, whether permanent or temporary, which results in an impairment of mental functioning”.
Mental Health Movement advocates claim that disorders such as ME and CFS come into what they call the “medically unexplained symptoms” category (known as MUS or MUPS, which stands for “medically unexplained physical symptoms”) and that such disorders are psychogenic in origin; contrary to established principles of scientific investigation and discovery, these psychiatrists assert that “if all you look for are biomedical explanations, you’re missing the whole picture” and that if Government wants to solve the waiting-list dilemma (which it does, for political reasons), “they will have to channel serious money at this problem” by funding psychiatric management regimes (http://www.thes.co.uk/search/story.aspx). The implications of the implementation of this policy are already spiralling out of control.
On 4th May 2000, a letter from the Office of the Minister of State at the Department of Health (signed by John Hutton) seemed not to rule out the re-classification of ME/CFS as a “mental” disorder, stating it was unlikely that the proposed reforms to the Mental Health Act would affect such patients (quote) “even if (ME/CFS) were reclassified as a mental rather than a physical disorder”.
Infiltration of institutions by vested interest groups was the subject of an article by George Monbiot published on 9th December 2003 in the Guardian (Invasion of the Entryists), from which the following extracts are taken and to whom acknowledgement is made:
“One of the strangest aspects of modern politics is the dominance of former left-wingers who have swung to the right. The “neo-cons” pretty well run the White House and the Pentagon, the (UK) Labour party and key departments of the British government. But there is a group which has travelled even further to the extremities of the pro-corporate right. Its tactics (involve) entering organisations and taking them over. Research published for the first time today suggests that members of this group have colonised a crucial section of the British establishment. The organisation began in the late 1970s as a Trotskyist splinter; it immediately set out to destroy competing oppositional movements. In 1988 it set up a magazine called Living Marxism (known as) LM. By this time it had moved to the far right and was led by the academic Frank Furedi who started writing for the Centre for Policy Studies (founded by Keith Joseph and Margaret Thatcher) and who contacted the supermarket chains, offering, for £7,500, to educate their customers ‘about complex scientific issues’. In the late 1990s the group started infiltrating the media, with remarkable success. In 2000, LM was sued by ITN after falsely claiming that (its) news journalists had fabricated evidence of Serb atrocities against Bosnian Muslims. LM closed, and was resurrected as the web magazine Spiked.
“All this is already in the public domain. But now, thanks to the work of researcher Jonathan Matthews, what seems to be a new front in this group’s campaign has come to light. Its participants have taken on key roles in the formal infrastructure of public communication used by the science and medical establishment.
“Its participants (work) for the PR firm Regester Larkin, which defends companies such as the biotech giants Aventis, Bayer and Pfizer against consumer and environmental campaigners.
“(One of its participants) is Fiona Fox, who is the director of the Science Media Centre (which) is funded, amongst others, by the pharmaceutical companies Astra Zeneca, Dupont and Pfizer. Fox has used the Science Media Centre to promote the views of industry and to launch fierce attacks against those who question them.
“Are we looking at a group which wants power for its own sake, or one following a political design? The scientific establishment appears unwittingly to have permitted its interests to be represented to the public by the members of a bizarre and cultish political network. Far from rebuilding public trust in science and medicine, this group’s repugnant philosophy could finally destroy it”.
Of significance to the ME community is the fact that Spiked’s health writer is Dr Michael Fitzpatrick, well-known for presenting and promoting the views of Professor Simon Wessely and for his perverse and immoderate attacks on those with ME. One such article can be found at http://www.spiked-online.com/Articles/00000002D3B6.htm (SPIKED: Health: 17th January 2002: “ME: the making of a new disease”). Referring to the then newly published Chief Medical Officer’s Working Group report on CFS/ME (see text), Fitzpatrick roundly derided the CMO, Professor Liam Donaldson: “The CFS/ME compromise reflects a surrender of medical authority to irrationality. The scale of this capitulation is apparent when Professor Donaldson claims that CFS/ME should be classified together with conditions such as multiple sclerosis and motor neurone disease. The effectiveness of the ME lobby reflects its middle-class base.”
Also of significance is the fact that in its NOTES FOR EDITORS, Spiked states that Professor Simon Wessely is available for comment or interview and can be contacted through Sandy Starr at Spiked (0207-269-9234).
Of relevance to the ME community is that fact that Lord (David) Sainsbury (Science Minister –see text) is a keen supporter of the Science Media Centre. It is Lord Sainsbury’s Linbury Trust that since 1991 has financially supported studies of chronic fatigue by psychiatrists of the Wessely School.
Information on the GMWATCH website (www.gmwatch.org) is also important to the ME community. By 2003, Lord Sainsbury had donated over £11 million to the Labour Party. Mark Seddon, a member of Labour’s National Executive Committee, told the BBC “In any other country, I think a government minister donating such vast amounts of money and effectively buying a political party would be seen for what it is, a form of corruption of the political process”.
For some, the choice of an unelected biotech investor and food industrialist to be Science Minister is more than emblematic of the UK’s corporate-science culture.
In a recent Financial Times article, Lord Sainsbury cites the following statistics: British universities spun off 199 companies in 2000, up from an annual average of 67 in the previous five years. The UK’s ratio of companies to research spending is now more than six times higher than the US. “It’s a dazzling record”, Lord Sainsbury is quoted as saying.
Not everyone shares Sainsbury’s enthusiasm. Professor Stephen Rose of the Open University Biology Department is among those who have commented critically on this emerging corporate science culture: “The whole climate of what might be open and independent scientific research has disappeared”.
What is the problem?
The problem is that the Mental Health Movement does not restrict itself to mental disorders and ME has been the subject of unremitting psychiatric spin since the late 1980s: although ME is not classified by the WHO in the ICD as “mental”, in the UK it is being high-jacked and covertly re-classified as “mental” by a small but influential group of psychiatrists known colloquially as the “Wessely School” (Hansard: Lords: 19th December 1998:1013 – see below) who have their own vested interests in casting their net of illness control ever wider. They have proposed a hypothetical model that cannot be tested experimentally and it is this group of psychiatrists who are the most assiduous advocates of the Mental Health Movement in the UK, to the extent that, in the case of ME, they have been shown to have created their own conclusions before generating the data which would support such conclusions.
The prevalence of ME/CFS is higher than for multiple sclerosis, which in the UK affects about 83,000 people; in January 2002 the Report of the Chief Medical Officer’s Working Group (see below) gave a UK population prevalence of 0.2 – 0.4% (ie. up to 240,000 affected people). Certainly the incidence is known to be rising: as long as a decade ago, UNUM (one of the largest disability insurers) reported that in the five years from 1989 – 1993, disability claims for this disorder increased by 460%. In terms of insurance costs, ME/CFS came second in the list of the five most expensive conditions, being three places above AIDS.
At the publication of the UK Chief Medical Officer’s Working Group Report on “CFS/ME” (see below), the Chief Medical Officer (CMO) went on public record on BBC News on 11th January 2002 stating that the treatment of “CFS/ME” must improve and that it should be classed as a chronic condition with long-term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease. It was not only Dr Fitzpatrick of Spiked who disagreed with the CMO: the week after the CMO made his announcement, the British Medical Journal (BMJ) highlighted the view of a prominent member of the Wessely School (psychiatrist Michael Sharpe) that doctors would not accept a particular strategy just because the CMO’s Report recommended it.
Whether ME and CFS represent the same disorder or are two different entities has engaged many health care professionals, especially certain psychiatrists, in an often hostile political battle. These psychiatrists advise Government that ME does not exist as a separate entity; that “CFS/ME” is one and the same disorder and that it is a mental disorder which must be “managed” by mind-altering psychotherapy, despite the fact that, accepting that CFS equates with ME, international non-psychiatrist experts consider it to be a physical (ie. organic) neuro-immunological disorder and that there is a significant literature which supports an organic pathoaetiology.
In the UK, the primary duty of care for the sick has been displaced in the fierce battle for supremacy waged by this group of psychiatrists. Because personal status, competing personal interests, commercial interests and massive funding issues are involved, battle lines remain drawn and it is the patients who are caught in the cross-fire. As Shakespeare noted: “As flies to wanton boys are we to the gods; They kill us for their sport” (King Lear, Act IV Scene I).
What is the “Wessely School”?
UK policy concerning ME is based on the intransigent beliefs of a group of psychiatrists led by Simon Wessely, for years an adviser to various Government Departments including the Ministry of Defence and who is now Professor of Epidemiological and Liaison Psychiatry at Guy’s, King’s and St Thomas’ Medical School (GKT) based at King’s College Hospital (KCH) and at The Institute of Psychiatry (IOP); he is also Director of the Chronic Fatigue Syndrome Research Unit and of the Gulf War Illnesses Research Unit, both at King’s. Other leading members include psychiatrists Michael Sharpe (formerly of Oxford and now at Edinburgh, where Alan Carson now collaborates with him); Peter White (of St Bartholomew’s Hospital, London); Anthony David, Anthony Cleare, Stephen Reid and Matthew Hotopf of The IOP and KCH and Richard Mayou, Keith Hawton and Christopher Bass of Oxford. Trudie Chalder, a former Registered Mental Nurse, works with Wessely and her name often appears on their publications and in funding applications. Other supporters include Elena Garralda, Professor of Child and Adolescent Psychiatry at St Mary’s, London; Tony Pelosi of Glasgow; Stephen Lawrie of Edinburgh; Alison Weardon and Leonie Ridsdale, Senior Lecturer in General Practice at Guy’s, King’s and St Thomas’, London.
The stated aim of Simon Wessely is to “eradicate” ME from the medical lexicon and to re-classify CFS as a mental disorder which does not need biomedical research or explanation and which is to be managed by a version of cognitive behavioural therapy which he claims to have developed. His own commercial involvement in such a management regime has been established (see below).
The certainty of these psychiatrists that they are right whilst other researchers of international repute who disagree with them are wrong, their power and their influence are destroying countless lives, yet they continue to fly unscathed even in the face of substantial evidence that calls their views into question.
Wessely School psychiatrists have built their careers and reputations on denying the physical nature of ME/CFS, with the result that untold numbers of chronically and seriously ill patients are bullied, derided, threatened and driven to suicide by being told that they are not physically ill but are suffering from “aberrant illness beliefs”.
The constant theme running through the work of this group of psychiatrists is that CFS is a somatoform disorder and that factors such as female gender, too much focus on normal bodily sensations, specific personality traits, avoidance behaviour, learned helplessness, faulty thought processes, lack of motivation, inadequate coping strategies, interpersonal conditioning and contagious sociological hysteria play an important role in the perpetuation of the disorder.
Wessely School psychiatrists have been described in the eBMJ (N Portman, 3rd December 2003) as “a small clique of undemocratic, unaccountable, self-serving psychiatrists who have managed to monopolise most of the research funding in this field and, thanks to their prejudices, have been its downfall ever since”.
Without doubt, the influence of Simon Wessely has resulted in a cascade of horrors which most people in the UK do not know about and when they do, they find scarcely believable.
It has taken 25 years for the notorious Professor Sir Roy Meadow to be exposed and discredited as “world expert” on Munchausen’s Syndrome by Proxy, whose views Lord Howe described as “one of the most pernicious and ill-founded theories to have gained currency in childcare and social services in the past 10 to 15 years. It is a theory without science. It rests instead on the assertions of its inventor”. The downfall of Meadow, who is finally to appear before the Professional Conduct Committee of the General Medical Council, serves to prove that a so-called “medical expert” whose views apparently portray incontrovertible medical judgment and certainty may, in fact, be wrong, but the damage done cannot be undone. So it is with ME. It must not be allowed to take 25 years before the views of the Wessely School on ME are subjected to similarly rigorous public examination and exposure.
Many doctors and their non-medical managers still have misguided ideas about medical negligence and believe that doing one’s best is all that matters or is required. This is not so in law and the legal profession is about to become less deferential to the medical profession. (http://bmj.bmjjournals.com/cgi/eletters.327/7424/1118#41799)
The Opinion of an eminent Queen’s Counsel has been obtained
A leading QC and member of the House of Lords was asked for an Opinion on the Wessely School approach to ME: that Opinion is unequivocal; it states: “On the document you have sent me there is an overwhelming case for the setting up of an immediate independent investigation as to whether the nature, cause and treatment of ME as considered by the Wessely School is acceptable or consistent with good and safe medical practice. There is substantial doubt as to whether such could be the case. A formal request should be made to set up an enquiry. It is essential that a reputable firm of solicitors should be instructed”.
Are psychiatrists cruel?
Based in New York, Dr John Diamond is a founding member of The Royal College of Psychiatrists. In an extract from his recent book (Facets of a Diamond 2003) in the October 2003 issue of the journal “What Doctors Don’t Tell You”, Diamond says “I am no longer a psychiatrist. I renounce it because I believe cruelty is at the core of the profession (and) I believe that there is something inherent in the profession that tends to bring out any cruelty lurking within. I have long wondered why this profession --- which ought to be so compassionate – has, it seems to me, turned its back on humanity”.
A recent article in The Sunday Telegraph (“Trust me, I’m a psychopath” by Alasdair Palmer, 30th November 2003) quotes Dr Robert Hare, a Canadian professor of psychology, as saying “The psychiatric profession and its associates are very reluctant to admit they are wrong or that they have made a mistake”.
Yet psychiatrists have powerful positions of control and ever more credibility in so many areas: Simon Wessely and Anthony David were funded by the US Pentagon (and came to the conclusion that Gulf War Syndrome does not exist) and Wessely is involved with advising NATO. Add to this the errors of mis-diagnosis made by psychiatrists in the past (Parkinson’s Disease, multiple sclerosis, epilepsy, diabetes, thyrotoxicosis and many other disorders with a physical causation have all been asserted by psychiatrists to be “mental” disorders until medical science revealed their true aetiology) and one has a right to despair at the current situation facing ME patients.
Two illustrations of the implementation of Wessely School policy
Out of the many known cases of patients being persecuted as a result of the implementation of Wessely’s policy on ME, just two are mentioned here: details of many others have been put before the Chief Medical Officer, who has made it known that he receives more letters about ME than on any other medical issue. There are numerous records relating to this matter in Hansard (both Lords and Commons) and on 23rd November 1999, the House of Commons Select Committee on Health produced its Report looking at adverse clinical incidents, unexpectedly poor outcomes to treatment, failures in medical care and poorly-performing doctors: that Committee took representations from at least eight people about ME.
1. The case of Ean Proctor
In 1988, a formerly healthy 12 year old boy named Ean Proctor from the Isle of Man had been suffering from ME since the autumn of 1986; his symptoms included total exhaustion, feeling extremely ill, abdominal pain, persistent nausea, drenching sweats, headaches, recurrent sore throat, heightened sensitivity to noise and light and loss of balance; he was also dragging his right leg. In 1987 his condition had rapidly deteriorated; he had gradually (not suddenly as may occur in hysterical disorders) lost his speech and was almost completely paralysed (which lasted for two years). He had been seen by Dr Morgan-Hughes, a senior consultant neurologist at the National Hospital in London, who had reaffirmed the diagnosis of ME and advised the parents that ME patients usually respond poorly to exercise until their muscle strength begins to improve; he also advised that drugs could make the situation worse.
Although he did not obtain his MRCPsych until 1986, during one visit by the Proctors to the National Hospital in 1988, Wessely (then a Senior Registrar in Psychiatry) entered the room and asked Ean’s parents if he could become involved in his case; desperate for any help, they readily agreed. Wessely soon informed them that children do not get ME, and unknown to them, on 3 June 1988 he wrote to the Principal Social Worker at Douglas, Isle of Man (Mrs Jean Manson) that “Ean presented with a history of an ability (sic) to use any muscle group which amounted to a paraplegia, together with elective mutatism (sic). I did not perform a physical examination but was told that there was no evidence of any physical pathology…I was in no doubt that the primary problem was psychiatric (and) that his apparent illness was out of all proportion to the original cause. I feel that Ean’s parents are very over involved in his care. I have considerable experience in the subject of ‘myalgic encephalomyelitis’ and am absolutely certain that it did not apply to Ean. I feel that Ean needs a long period of rehabilitation (which) will involve separation from his parents, providing an escape from his “ill” world. For this reason, I support the application made by your department for wardship”.
On 10 June 1988 Wessely provided another report on Ean Proctor for Messrs Simcocks & Co, Solicitors for the Child Care Department on the Isle of Man. Although Wessely had never once interviewed or examined the child, he wrote “I did not order any investigations….Ean cannot be suffering from any primary organic illness, be it myalgic encephalomyelitis or any other. Ean has a primary psychological illness causing him to become mute and immobile. Ean requires skilled rehabilitation to regain lost function. I therefore support the efforts being made to ensure Ean receives appropriate treatment”. Under his signature, Wessely wrote “Approved under Section 12, Mental Health Act 1983”.
In that same month (June 1988), without ever having spoken to his parents, social workers supported by psychiatrists and armed with a Court Order specially signed by a magistrate on a Sunday, removed the child under police presence from his distraught and disbelieving parents and placed him into “care” because psychiatrists believed his illness was psychological and was being maintained by an “over-protective mother”. Everything possible was done to censor communication between the child and his parents, who did not even know if their son knew why they were not allowed to visit him.
In this “care”, the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this “care” included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected. The side-ward was next to the lavatories and the staff believed he would take himself to the lavatory when he was desperate enough. He was unable to do so and wet himself but was left for many hours at a time sitting in urine-soaked clothes in a wet chair. Another part of the “care” involved the child being raced in his wheelchair up and down corridors by a male nurse who would stop abruptly without warning, supposedly to make the boy hold on to the chair sides to prevent himself from being tipped out; he was unable to do so and was projected out of the wheelchair onto the floor, which on one occasion resulted in injury to his back. This was regarded as a huge joke by the staff.
In a further medical report dated 5th August 1988 for Messrs Simcocks, Wessely expressed a diametric opinion from that of Dr Morgan-Hughes, writing: “ A label does not matter so long as the correct treatment is instituted. It may assist the Court to point out that I am the co-author of several scientific papers concerning the topic of “ME”….I have considerable experience of both (it) and child and adult psychiatry (and) submit that mutism cannot occur (in ME). I disagree that active rehabilitation should wait until recovery has taken place, and submit that recovery will not occur until such rehabilitation has commenced……..it may help the Court to emphasise that…active management, which takes both a physical and psychological approach, is the most successful treatment available. It is now in everyone’s interests that rehabilitation proceeds as quickly as possible. I am sure that everyone, including Ean, is now anxious for a way out of this dilemma with dignity”.
Ean Proctor was kept in “care” and away from his parents for over five months.
Although this took place in 1988, such brutality is still happening in the UK: the continued barbaric “treatment” of sick children by certain psychiatrists who profess to specialise in ME was the subject of a Panorama programme transmitted on 8th November 1999 and was profoundly disturbing (a videotape recording is available). Nothing seems to have been learnt from the appalling case of Ean Proctor and there is no question that children with ME continue to be forcibly removed from their parents and home; this issue was raised by Dr Nigel Speight, a consultant paediatrician at the University Hospital of North Durham with 20 years experience of children with ME, who in April 1999 reported to the Chief Medical Officer’s Working Group on “CFS/ME” that the frequency of psychiatrists diagnosing the parents of children with ME as having Munchausen’s Syndrome by Proxy now amounted to an epidemic. Jane Colby, Executive Director of The Young ME Sufferers Trust (TYMES Trust) says “To have your sick child taken from you, to be suspected of damaging them yourself, just when they most need your care, is an appalling experience”.
2. The case of Child X: Some ten years after her own nightmare experience, Mrs Proctor answered a knock at her door on the Isle of Man and was surprised to find herself confronted by a police officer who had been directed to question her by the Metropolitan Police. Although at the time she did not know it, another child with ME in southern England was being threatened with forcible removal from his home if his parents did not agree to his being admitted to a psychiatric hospital: in an effort to protect the child from inappropriate treatment and medical harm, his father had surreptitiously taken him abroad. When police officers broke into the house, it seems they found Mrs Proctor’s name and address and she was therefore suspected of assisting the boy’s parents in his disappearance and of harbouring him, which was untrue. Believing his son to be safe, the father returned to the UK where he was arrested and sentenced to two years imprisonment, a sentence he was happy to endure, thinking that his son was safe. However, the child’s mother was then targeted and threatened with imprisonment if the boy was not handed over to a particular psychiatrist at a Teaching Hospital. The physically sick child was forced to spend seven months under the “care” of this psychiatrist and was subjected to “active rehabilitation”, during which time his condition deteriorated considerably. He is now severely ill and terrified of health professionals.
The lengths to which these psychiatrists who have focused their careers on “eradicating ME” will go in order to obtain parental obedience, and the control they wield, is extremely disquieting.
Professor Wessely, though, seems to be curiously affected by elective amnesia over the compulsory removal of children with ME from their parents: his involvement with the wardship of Ean Proctor is incontrovertibly established, yet in a Channel 4 News programme on 26th August 1998 in which the case of Child X was being discussed, when asked by the presenter Sheena McDonald if there can ever be a case for the coercive approach in situations involving forcible removal of a child with ME from the parents, Wessely stated (verbatim quote) “You know very well I know nothing about these cases” and when Sheena McDonald asked “So you would agree that unless there is criminal abuse, there is never a case for a coercive approach to take children away from parents?”, Wessely replied (verbatim quote) “I think it’s so rare. I mean, it’s never happened to me”. Despite this denial on national television, there is unequivocal evidence that Wessely had been personally involved in Ean Proctor’s wardship and that he had advised the local authorities to take the action they did. (Copies of Wessely’s letters and reports and a videotape recording of the Channel 4 News item are available).
Although formally classified by the World Health Organisation in the International Classification of Diseases (ICD) as a neurological disorder since 1969 (currently to be found at ICD-10: G93.3), Wessely School psychiatrists have succeeded in a gradual but consistent distortion of the clinical entity ME, by denying its very existence and by subsuming it within the heterogeneous label of “CFS”. The term CFS was first coined in the US in 1988 and at the time, it was indicated that it was intended to replace the older term ME or to be considered equivalent to it, but Wessely School psychiatrists have increasingly equated “CFS” with other chronic fatigue states (especially neurasthenia) which are formally classified in the ICD as Mental and Behavioural Disorders (ICD-10 F48.0).
It is important to be aware, however, that ME remains classified as a neurological disorder in the ICD (with CFS listed as an alternative term for ME) and that the WHO has confirmed it has no plans to re-classify the condition as a psychiatric disorder.
Current Government policy concerning ME/CFS
Whereas the American Medical Association has issued a Statement addressing the fact that basic laboratory tests are insufficient for ME/CFS patients because it is known that routine screening is normal in 90% of such patients and that more complex investigations (such as immunological assays, nuclear medicine screening and gene expression profiling) are essential to demonstrate the underlying biological and physiological basis of ME/CFS, in the UK current and future policy dictates the non-investigation of ME/CFS patients other than by routine screening; it dictates that no special provision or facilities other than psychiatric clinics need be provided for the care of ME/CFS patients; it dictates that no special training for doctors about the disorder is necessary; it dictates the denial of appropriate medical care; it dictates that there is no need for respite care (and commissioning officers are advised accordingly); it dictates that State benefits for those with ME be withdrawn unless patients agree to psychiatric intervention, whereupon (as for all psychiatric disorders) a lower rate of benefit is payable; it approves the use of Court Orders for the compulsory removal from their home of both children and adults with ME under the auspices of the Mental Health Act if patients decline psychiatric intervention and it dictates that no biomedical research is necessary into the disorder and that such research should not be publicly funded by Government bodies.
What is ME and is it the same as Chronic Fatigue Syndrome (CFS)?
Myalgic Encephalomyelitis (ME): ME is not a new disorder; there are many reports in the medical literature spanning at least 70 years and in April 1978 the Royal Society of Medicine accepted ME as a distinct entity. It is a serious and complex disorder which can affect virtually every major system in the body, with neurological, immunological, cardiovascular, respiratory, hormonal, gastrointestinal and musculo-skeletal manifestations.
The cardinal features of ME are post-exertional muscle fatigability (this bears no comparison with ordinary “tiredness” or “fatigue” or TATT (“tired all the time”, which is a feature of many psychiatric disorders); profound malaise; intractable muscle pain in specific groups of muscles (myalgia); variability of symptoms from day to day and even from hour to hour, and chronicity.
Non-psychiatric research into ME is impressive. It is funded in the UK almost entirely by small charities such as MERGE (www.meresearch.org.uk) but not by the larger charity Action for ME, which has now chosen to support Government policy and as a result has received significant Government funding, This research deals with scientific facts, not with beliefs, and there is an ever-increasing body of evidence from international centres of excellence of a variety of biomarkers for ME, some of the most significant being inflammatory markers. The following evidence exists:
neurological deficits - these are demonstrated by nuclear medicine techniques such as SPECT scans (single photon emission computed tomography, a type of radionuclide scanning) and MRS scans (magnetic resonance spectroscopy) which demonstrate cerebral hypo-perfusion, and PET imaging (positron emission tomography) which shows brain areas of hypo-metabolism
endocrine dysfunction - there is evidence of disturbance of the HPA axis (hypothalamic-pituitary-adrenal axis) and of central adrenal insufficiency, with evidence of an impaired stress response in that both the right and left adrenal gland bodies are reduced by over 50%, indicative of significant adrenal atrophy
immune dysfunction - there is abundant evidence of an unusual and inappropriate immune response, with evidence that changes in different immunological parameters correlate with particular aspects of disease symptomatology and with measures of disease severity
vascular disturbances – there are specific disturbances peculiar to patients with ME/CFS, characterised in particular by orthostatic intolerance (this is not the same as postural hypotension, stated by some psychiatrists to be related to de-conditioning). There is evidence of very extensive damage to the endothelium which lines all blood vessels; it was found to be swollen and stiffened as a result of severe damage: damage of this kind would compromise the blood supply to the deep capillary beds in all tissues, including nerve cells
mitochondrial abnormalities in muscle - there is convincing evidence that ME/CFS patients reach exhaustion more rapidly than normal subjects. The use of 31P NMR (31P nuclear magnetic resonance) has now provided positive evidence of defective oxidative capacity: oxidative activity involves production of ATP (adenosine triphosphate, the main energy releasing source of the cell) which can be seen and monitored in tissues. The findings show that there is a continued loss of post-exertional muscle power (giving an additional loss of power), with delayed recovery for at least 24 hours, whereas sedentary controls recovered full muscle power after 200 minutes. Further evidence shows that some ME/CFS patients have persistent enterovirus within skeletal muscle tissue; these are also findings consistent with delayed recovery of muscle power after exertion.
There is also evidence of increased neutrophil apoptosis (programmed cell death) in ME, whilst evidence of higher levels of TGF b1 (transfer growth factor beta 1), indicative of a persistent viral infection or of a toxic state has been presented at international conference proceedings on ME/CFS.
In health, the cells of endothelium that line every blood vessel of every organ and which provide the all-important blood-brain barrier have tight cell junctions that prevent many compounds from crossing these membranes. Some chemicals are known to open these normally tight cell junctions, allowing free transport of compounds that are toxic to the central nervous system. When the gut wall, for instance, has increased permeability, the opioid peptides (casomorphin and gliadomorphin) which would normally be excluded are absorbed into the blood stream, giving rise to diffuse symptomatology and systemic dysfunction. Hypersensitivity reactions are common in ME/CFS patients, especially to cow’s milk and gluten, as well as to many medicinal drugs, particularly to anti-depressants. The compromised gut facilitates the development of a gut dysbiosis which in turn can give rise to autoimmune disease, with very significant and chronic damage to health.
Studies from both Israel and the US have shown that ME/CFS has components of autoimmune disease: immunohistochemistry has shown a high percentage of reactors in these patients as in patients with lupus (another autoimmune disorder) which is a known overlap condition.
Studies performed in the US on ME/CFS patients have shown prominent RNA not observed in normal controls. RNA bands so far sequenced show homology with human genes which are noted for their tendency for gene rearrangement under severe physiological stress: environmental stresses which researchers are investigating include the frequent and well-documented linking of this disease with food and chemical sensitivities. In the UK, a pilot study (funded by a small charity, the CFS Research Foundation) has found changes in 50 or so genes in patients with ME/CFS, from which it can definitely be concluded that many of the genes that show up are involved with the immune system.
The exhaustion experienced by patients is extreme, being described in the Journal of the American Medical Association in the following terms: “The disabling weakness and exhaustion that a patient with (ME) CFS experiences is so profound that “fatigue” is probably an insult” (J. Cuozzo: JAMA 1989:261:5:697).
Other distressing symptoms commonly arising in the more severely affected are:
· multi-systemic dysfunction including vertigo, dysequilibrium and ataxia
· difficulty with swallowing (choking fits are not uncommon and both adults and children may require tube-feeding) and voice production (particularly if speaking is sustained)
· episodic cardiac pain indistinguishable from myocardial infarction (heart attack) and segmental chest wall pain
· pancreatitis
· frequency of micturition, including nocturia (bladder and bowel control may be insecure)
· pronounced vascular disturbance (leading for example to an inability to use the fingers and to the “ME headache”)
· inability to stand unsupported for more than a few moments with the ability to walk only very short distances, requiring the use of a wheelchair
· difficulty with simple tasks such as climbing stairs and dressing
· difficulty with breathing, with sudden attacks of breathlessness requiring the administration of oxygen (lung function studies have demonstrated a significant reduction in all parameters tested)
· in females, ovarian-uterine dysfunction is not uncommon, whilst in males, prostatitis and impotence may occur
· cognitive impairment may be profound
· hair loss is a recognised and documented finding
· an adverse reaction to medicinal drugs, especially to anaesthetics, is virtually pathognomonic.
American and Australian research has shown that the quality of life in this disorder is lower than for any other chronic illness group apart from terminal cancer and that the quality of life is uniquely disrupted on all levels.
A major report by an ME charity (Severely Neglected: ME in the UK; Action for ME, March 2001) found that 77% of sufferers experienced severe pain; over 80% had felt suicidal as a result of the illness; 70% are either never able, or are sometimes too unwell, to be able to attend a doctor’s clinic; 65% (ie. nearly two out of three) have received no advice from their GP on managing this illness; 80% of those who are currently bed-ridden by ME report that a request for a home visit by a doctor has been refused, and many people do not receive the State benefits to which they are clearly entitled. (This report is apparently no longer used by Action for ME, who have seemingly now joined forces with the Wessely School in endorsing psychiatric interventions).
Suicide rates are very high, not necessarily because patients are psychiatrically disturbed, but because the unavoidable isolation and the physical suffering are simply unbearable without adequate support. The losses are many, including loss of career, loss of marriage, loss of ability to be self-supporting and loss of independence. Although frequently told that they do not look ill, patients may be severely incapacitated and quite unable to fend for themselves. Their suffering is compounded if, as is often the case, their means of financial survival by way of State benefits is withdrawn because of Wessely’s dictum that ME is a “non-disease” (see below). Many patients are simply too sick to be forced to attend psychiatric units and to participate in compulsory “management strategies” which involve exercising, but if they fail to attend, they are deemed not to want to get better and their State benefits are withdrawn because of Wessely’s dogmatic advice to Government that ME is nothing more than an “aberrant illness belief”. There are many such known cases, including those in which ME patients have been threatened with being sectioned (ie. compulsorily detained under the Mental Health Act) unless they comply with psychotherapy.
In his Testimony before the US FDA Scientific Advisory Committee on 18th February 1993, Paul Cheney, Professor of Medicine and Director of the Cheney Clinic, North Carolina and one of the world’s leading experts on ME/CFS, testified as follows:
“I have evaluated over 2,500 cases. At best, it is a prolonged post-viral syndrome with slow recovery. At worst, it is a nightmare of increasing disability with both physical and neuro-cognitive components. The worst cases have both an MS-like and an AIDS-like clinical appearance. We have lost five cases in the last six months. The most difficult thing to treat is the severe pain. Half have abnormal MRI scans. 80% have abnormal SPECT scans. 95% have abnormal cognitive-evoked EEG brain maps. Most have abnormal neurological examination. Most have evidence of T-cell activation. 80% have evidence of an up-regulated 2-5A antiviral pathway. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self”.
In the February 2000 issue of the American Journal of Medicine, Anthony Komaroff, Assistant Professor of Medicine at Harvard, summarised key points in an Editorial:
“Many controlled studies have compared patients with age-matched and gender-matched healthy control subjects. The evidence indicates pathology of the central nervous system and the immune system. There is considerable evidence from different investigators, using different techniques and different groups of patients, of a state of chronic immune activation. In summary, there is now considerable evidence of an underlying biological process in most patients (which) is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest”.
As long ago as 1994, Professor Paul Levine from the US National Cancer Institute stated “the spectrum of illnesses associated with a dysregulated immune system must now include (ME)CFS” and the Centres for Disease Control now take the disorder so seriously that it has been designated a “serious legitimate diagnostic Priority One disease of public health importance”.
In the UK, the very existence of ME is denied: psychiatrist Simon Wessely advises that ME is a “non-disease” and he has personally re-classified CFS as a mental disorder in UK reference manuals (see below). He asserts that the disorder exists only because of “artefacts of medical specialisaton” and he advises that such disorders “should not be dignified by their own formal case definition and body of research” (Functional somatic syndromes: one or many? S Wessely, C Nimnuan, M Sharpe Lancet 1999:354:936-939).
What is CFS?: In the 1980s in the US (where there is no NHS and most of the costs of health care are borne by insurance companies), the incidence of ME escalated rapidly, so a political decision was taken to rename ME as “the chronic fatigue syndrome”, the cardinal feature of which was to be chronic or on-going “fatigue”, a symptom so universal that any insurance claim based on “tiredness” could be expediently denied. The new case definition bore little relation to ME: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored. In 1991 in the UK, Wessely and Sharpe were amongst a group which produced their own criteria for “CFS” and this definition became known as the Oxford criteria. In 1994 these same psychiatrists were instrumental in yet another revision of the criteria known as the CDC or the Fukuda criteria because they were produced under the auspices the US Centres for Disease Control. Of great significance is the fact that both the Oxford and the CDC criteria specifically include psychiatric conditions which are known to feature prolonged “fatigue” or “tiredness” and, crucially, they specifically exclude all physical signs from the case definition of CFS, including the signs of neurological disease which had been noted in the ME medical literature for many years. Thus the quite specific neuro-immunological disease ME became subsumed within the heterogeneous label of “CFS”.
This marked a turning point in the “eradication” of ME by psychiatrists and of the campaign to designate CFS as a “mental” disorder.
Are both camps studying the same disorder?
Disconcertingly, the editors of both the CMO’s Report of January 2002 and the Medical Research Council’s subsequent document setting out its preferred strategy for the direction of future research in “CFS/ME” (released on 1st May 2003, the editor being Dr Chris Watkins, whose position at the time was MRC Programme Manager for Research on Mental Illness) persistently refused to heed repeated calls for accuracy: when draft copies of both Reports were studied, the same important error appeared in both documents and was pointed out but was deliberately retained in the final version of both reports. That error relates to the classification of ME and of CFS in the ICD and it reads:
“Currently, CFS and ME are classified as distinct illnesses in the World Health Organisation’s International Classification of Diseases” (CMO’s Report 2002:1.4.1).
As this error was pointed out to the editors of both reports long before they were published, it cannot have been an over-sight that the error appeared in the final versions of the reports and it may well have been expedience on the part of the Wessely School psychiatrists who dominated both reports (see below).
This error is easily shown to be erroneous: CFS is clearly listed at G93.3 as a term by which ME is also known, whilst other syndromes of chronic fatigue are listed under Mental and Behavioural Disorders at F48.0, a category from which ME/CFS is expressly excluded by the WHO. Moreover, the WHO has confirmed that it is “unacceptable” for the same disorder to be classified in two different places and does not accept this to have occurred.
It is necessary to be aware that the patients studied by Wessely are largely obtained from either his own 1991 Oxford criteria or from the 1994 CDC criteria which he helped to develop, neither of which selects those with ME.
It is increasingly accepted that it is inappropriate to synthesize results from studies of this illness which use different definitions to select study populations (A Comparison of Diagnostic Criteria. Jason et al: Evaluation and the Health Professions: in press December 2003), but Wessely is well-known for using the terms “fatigue”; “chronic fatigue”; “CFS” and “ME” interchangeably, even though they may represent totally different patient populations. He has been stringently criticised for this in, for example, the Quarterly Journal of Medicine (QJM 1997:90:723-727), where Hedrick succinctly pointed out his mischaracterisation of the facts and noted that it is unacceptable for him to summarise a wide variety of studies, in this case drawing conclusions across seven studies which were based on different patient populations -- from simple fatigue of 30 days to severe chronic fatigue of decades – without addressing the adequacy of the analysis performed. (In his article, Wessely even left out findings from cited studies which did not support his own pre-determined conclusions). To quote Hedrick: “Studies and review articles on psychiatric factors and CFS need to be subject to the same standards of scientific inquiry as studies investigating organic factors, lest the theoretical stance of the researchers / authors turns out to be the most powerful predictor of results”.
Wessely is always at pains to point out that only “patients” refer to the disorder as ME and that those with superior knowledge (ie. doctors) refer to it as “CFS”.
Until the issue of case definition is accurately addressed and is beyond doubt, it seems to serve Wessely’s purpose very well indeed to ensure that clinical obfuscation continues to abound around ME and CFS.
The published views of the Wessely School on ME
Wessely continues to be overtly patronising in his encounters with ME/CFS patients whilst continuing to mock and denigrate them in print and in his behaviour with his colleagues, where those with ME are the subject of his ill-concealed ridicule and contempt, as exemplified when he gave the 9th Eliot Slater Memorial Lecture at the IOP on 12th May 1994 (of which an audiotape recording exists). The title of his lecture was revealing: “Microbes, Mental Illness, The Media, and ME: the Construction of Disease”.
The sheer cumulative extent of Wessely’s denigration of ME patients as set out in his published works over 16 years has to be read for oneself to be believed.
For convenience, attached as an appendix to this document is a short compilation of referenced quotations from the published works on ME/CFS of both Simon Wessely and Michael Sharpe, which speak for themselves.
Extracts from many of Wessely’s published papers from 1987 to 1999 have been compiled in two spiral-bound volumes for ease of access and are available at cost price on request (see Further Reading).
Wessely is well-known for his published views on ME. One of the best known dates from 1993 when, together with Anthony David, he wrote in the Lancet (Lancet 1993:342:1247-1248) in unmistakable terms: “The inclusion in the tenth revision of the ICD of benign myalgic encephalomyelitis under Diseases of the Nervous System seems to represent an important moral victory for the self-help groups in the UK (but) neurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders. Neurasthenia would readily suffice for ME. Applying more stringent criteria for CFS in the hope of revealing a more neurological sub-group succeeds only in strengthening the association with psychiatric disorders”. What is strange is that the authors seemed not to know that in 1993, ME had already been classified under Diseases of the Nervous System for almost a quarter of a century.
Wessely believes that “There lies at the heart of CFS, not a virus or immune disorder, but a distortion of the doctor-patient relationship” (Chronic fatigue syndrome: an update. Anthony J Cleare Simon C Wessely. Update 14th August 1996:61-69).
In another paper, Wessely claims that ME exists “only because well-meaning doctors have not learnt to deal effectively with suggestible patients” (Psychological Medicine 1990:20:35-53).
Wessely concluded his major Review of the Post-viral Fatigue Syndrome (yet another ICD term for ME/CFS) in the prestigious British Medical Bulletin by citing medical comments on patients between 1880 and 1908, with the clear implication that such descriptions apply equally well to today’s ME sufferers: “always ailing, seldom ill; a useless, noxious element of society; purely mental cases; laziness, weakness of mind and supersensitiveness characterises them all; the terror of the busy physician” (BMB 1991:47:4:919-941).
In one medical textbook, Wessely wrote about ME/CFS patients that “the description given by a leading (doctor) at the Mayo Clinic remains accurate: ‘the doctor will see that they are neurotic and he will often be disgusted with them’ ” (Chronic fatigue and myalgia syndromes. Wessely S. In: Psychological Disorders in General Medical Practice. eds: N Sartorius et al Hogrefe & Huber 1990)
In relation to patients with ME/CFS in a paper on “medically unexplained symptoms”, Wessely states “ Patients with functional somatic symptoms are generally viewed as an unavoidable, untreatable and unattractive burden” (Patients with medically unexplained symptoms. Alcuin Wilkie Simon Wessely. British Journal of Hospital Medicine 1994:51:8:421-427).
Such has been Wessely’s “help” to ME/CFS patients over the last sixteen years of almost supreme reign over their fate that they are frequently abused by busy physicians whose views are based upon the misinformation with which they have been targeted and bombarded by the journals and the medical trade press (over which Wessely exerts so much editorial control) to the virtual exclusion of opposing views. Busy practising clinicians rarely have time to study the international medical literature which presents a very different picture.
Wessely’s own literature output is prodigious; he has authored well over 200 papers, so it is necessary to be aware that a database search on “ME/CFS” is dominated by his publications and that he promotes himself as a world expert in “medically unexplained symptoms”, a category in which he and his adherents firmly place “CFS”; it is easy, therefore, for the uninformed and disinterested to be misled about what is actually known and published in (non-UK) peer-reviewed journals about ME/CFS.
Wessely does not hesitate to refer to himself as a medico-legal expert, in one instance claiming “I frequently act on behalf of CFS/ME sufferers in their dealings with insurers (see below for his involvement with insurance companies) and the courts ---indeed, I was the principal expert witness in two recent medico-legal cases concerning CFS. In the first, the sufferer was awarded £160,000 and the second £320,000. These are the only two cases of their kind in the UK”. The published response pointed out that in the two cases to which Wessely referred, he was one of three medical expert witnesses in both cases and the £320,000 was an out of court settlement. The £162,000 was awarded in the High Court in December 1992 but was withdrawn by three appeal court judges who accepted Wessely’s testimony that the plaintiff (a diagnosed ME sufferer) was “suffering from at least some degree of psychological disorder”, evidence which was given without Wessely ever having examined the appellant. In claiming that there were only two such cases in the UK, Wessely was misleading, to say the least: in reality, at that time seven similar cases either had been or were going through the British legal system. (CFIDS Chronicle Spring 1994:14-18 and Summer 1994:77-79).
Wessely is ceaseless in his efforts to discredit ME and its hapless sufferers: in early 2002, at his instigation the British Medical Journal ran a ballot asking doctors to vote on which diseases they considered to be “non-diseases” which are best left medically untreated: Wessely proposed ME. Along with ear-wax accumulation, nail-chewing and freckles, ME was voted a non-disease, and in April 2002 both broadsheet and tabloid newspapers ran banner headlines proclaiming “Obesity and ME are not diseases, say doctors”. He appears indifferent to the fact that the stigma of having a “non-disease” could not fail to make things worse for sufferers; certainly it is the case that since the BMJ poll, many more ME patients have been removed without notice from their GP’s list, in one specific case, a very sick ME patient was brusquely informed that “This practice does not treat non-diseases”.
As a direct result, an unknown number of ME patients are simply left to suffer and die at home without any medical care or support.
Illustrations of Wessely’s influence over the national perception of ME/CFS
The WHO Guide to Mental Health in Primary Care: Wessely’s determination to eradicate ME as a legitimate medical disorder seems never to cease. In 1997 he deliberately included ME in the WHO Guide to Mental Health in Primary Care. This Guide, available to all GPs in the UK, was produced by the UK WHO Collaborating Centre at the IOP, so it legitimately bore the WHO logo. However, Wessely’s covert re-classification of ME was effected without the approval of the World Health Assembly and the WHO has confirmed in writing that what Wessely published about the classification of ME in the UK Guide to Mental Health in Primary Care did not carry WHO approval, stating: “It is possible that one of the WHO Collaborating Centres in the UK presented a view that is at variance with WHO’s position”. When on 18th August 2003 the Countess of Mar wrote to Wessely’s Dean at the Institute of Psychiatry (Professor George Szmukler) raising concerns about the erroneous inclusion of ME as a mental disorder, his reply of 27th August 2003 failed to address the issues raised and instead consisted of a paean of praise for Wessely, describing him as “one of the most outstanding medical researchers in the UK, and indeed internationally (and he) has been awarded a Research Medal by the Royal College of Physicians (specifically for work on CFS). The Institute of Psychiatry has every reason to have confidence in the quality and integrity of Professor Wessely’s research”. It later transpired that the Dean had co-edited a psychiatric text book with Wessely’s wife, also a psychiatrist and a Senior Policy Adviser to the Department of Health.
The NHS Information Authority (NHSIA): this is a body which was set up in 1999 to disseminate approved information throughout the NHS. The fact that the WHO so unequivocally distanced itself from the UK Guide to Mental Health in Primary Care did not prevent Government Ministers and the NHSIA from relying upon the Guide in their own database of mental disorders, both as a source of information from Ministers to Members of Parliament and also for distribution throughout the entire NHS, with dire results for ME sufferers. In various letters to MPs, the Parliamentary Under Secretary of State for Health (Stephen Ladyman MP) refers to the UK Guide to Mental Health in Primary Care as “the WHO Guide”, mistakenly conveying the notion that he was referring to a Guide produced by the WHO itself in Geneva (whereas he ought to have been referring to the UK WHO Collaborating Centre at the IOP) and stating about the Guide “Although WHO were initially keen to use the term ‘neurasthenia’, they eventually decided to call the section “Chronic Fatigue and Chronic Fatigue Syndrome (may be referred to as ME)”. In one letter dated 29th August 2003, Stephen Ladyman provided false information for Dr Liam Fox MP, erroneously stating that the current version of the ICD classified CFS in two different places: “as Neurasthenia / Fatigue Syndrome in the mental health chapter (F48.0) and as Post Viral Fatigue Syndrome / Benign Myalgic Encephalomyelitis in the neurology chapter (G93.3)”. This is quite unacceptable, because, as mentioned above, the WHO itself has confirmed that this is not the case, and that ME/CFS is expressly excluded from F48.0. It took until 2003 before “patient power” finally succeeded in securing an erratum on the website of the Royal Society of Medicine (publishers of the Guide) but to date (December 2003), the NHSIA has still not corrected its website and continues to classify ME/CFS as a mental disorder.
The House of Commons Library: it is known that MPs are provided only with information on ME/CFS which endorses a psychiatric aetiology, in particular with a Research Paper prepared for MPs by Dr Alex Sleator of the Science and Environment Section of the House of Commons Library (98/107, December 1998) which is simply a re-hash of the discredited Joint Royal Colleges’ Report of 1996 (see below). Many letters exist from MPs which testify to this. This is despite the fact that medical textbooks, papers, journals and international conference reports which demonstrate an organic basis for the disorder are known to have been placed in the House of Commons Library for the use of MPs. It has been ascertained that the information supporting an organic basis has been removed to the Library archives, so unless an MP was sufficiently well informed to know what s/he was asking for by name, it is difficult for them to access such material.
The Official Secrets Act: During the life (1998-2002) of the Chief Medical Officer’s Working Group on ME/CFS, members were ordered not to discuss the deliberations and were even threatened with the Official Secrets Act (documents available). If the psychiatric lobby which dominated that Working Group is so confident that they are right, why the need to force the suppression of opposing views by resorting to threats of prosecution under the Official Secrets Act in a Working Group that had nothing to do with State security but was supposed to be acting simply in the best interests of sick people? This is in marked contrast to the “Key working principles” set out in the first Briefing Note of March 1999, which states “The Group must have maximum ‘transparency’ ie. as much information about its activities to be distributed as possible to all potential interested parties”.
The Media: The UK national newspapers frequently run headlines such as “ME’s mainly in the mind---Study reveals yuppie flu can be cured by positive thinking” (Daily Express, 5th January 1996, about one of Mike Sharpe’s studies) and “ME is just a myth, sufferers told” (Sunday Telegraph, 20th November 1994, about the conclusions of 150 British psychiatrists attending a pharmaceutical conference in Jersey). On 5th May 1996 the Daily Express carried an article by Jonathan Miller from America, which ran with the headline “Chronic Bandwagon Disease” in which he referred to CFS as “Completely Fictitious Syndrome”.
Medical Trade Journals: The medical trade magazines (widely distributed free to doctors, especially to GPs and to hospital libraries by the drug companies) have made a point of promoting psychiatric interventions for those with “CFS” and of mocking and denigrating sufferers from ME/CFS in a way they would not dare do about patients with multiple sclerosis or other neurological disorders, yet ME is formally classified by the WHO as a neurological disorder. For example, on 1st April 1994 “GP Medicine” carried a bold banner headline proclaiming “GPs despise the ME generation”; on 12th January 1995 “Doctor” magazine ran a feature called “Bluffer’s Guide” by Dr Douglas Carnall, in which he wrote “Modern bluffers prefer the term chronic fatigue syndrome….if they really insist on a physical diagnosis tell them chronic fatigue syndrome is a complex disorder in which multiple biopsychosocial factors are mediated via the anterior hypothalamus ---in other words, it’s all in the mind. Or, if you’re feeling tired, you could always refer”; “Doctor” magazine also ran a quiz by Dr Tony Copperfield (known to be the pseudonym of a GP in Essex) in which GPs were asked to choose from four possible answers to the question “What would be your initial response to a patient presenting with a self-diagnosis of ME?” The correct answer was “For God’s sake pull yourself together, you piece of pond life”. One of the worst and most damaging examples was published on 20th October 2001 in “Pulse” in a series called “Choices for the new generation of GPs”. The item on which three GPs provided their approach was entitled “ME patient with litigation history demands inappropriate therapy” and the approach provided by Dr Mary Church (this is her real name: she is a Principal in a practice in Blantyre, Scotland and most disturbingly of all, she is a member of the British Medical Association medical ethics committee) was particularly contemptuous but is not untypical: “Never let patients know you think ME doesn’t exist and is a disease of malingerers. Never advise an ME patient to make a review appointment. At the end of the consultation, I say goodbye, not au revoir. Always refer ME patients to a local expert. It’s a wonderful way of passing the buck”. Although some of these items are doubtless intended to be amusing, it is not appropriate for a doctor to write with such contempt about any illness, physical or psychiatric, which ruins lives and quite frequently causes death, and these items are damaging because they lend credence to what many doctors privately admit they still believe (ie. Wessely’s view that ME does not exist and that “CFS” is a psychiatric disorder).
Disgraceful treatment of ME patients: On Sunday 15th June 2003, Clare White, a woman in her early 60s (a graduate who taught French during her professional academic career but who has been severely affected by ME for many years) was taken ill: being unable to contact her GP (because the surgery had only an answering machine telling patients to telephone NHS-Direct) she was forced to telephone 999 for an ambulance. She was taken to the A & E Department of a flagship London hospital in great distress, suffering from acute renal colic and vomiting. On arrival she was seen by a very helpful, polite, considerate and conscientious junior doctor who examined her and found that she had many abnormalities, including blood in her urine. He asked her if she had any other diagnosis, so she told him she suffered from ME. He started to organise various investigations, including an IVP (intravenous pyelogram), informing her of what was proposed. The woman then heard him discussing her case with a more senior colleague just outside her cubicle and was dismayed to hear the senior doctor instruct the junior doctor to do nothing because ME was a “personality” problem which did not need further investigation. She definitely heard this said very clearly. The junior doctor repeated forcefully that the abnormalities he had found had nothing to do with ME and that she needed investigating. The two doctors had a heated argument, the outcome being that the junior doctor, although clearly very angry, was pressurised into not investigating further. In her own words, “a stop was put on the works”. To his credit, the junior doctor, who was visibly uncomfortable, arranged a wheelchair and ambulance transport for the woman to be taken home. She lives alone and has no-one to look after her. The pain has now spread to the bladder region but she is receiving no medical care and no social support. No-one wants to know and no-one cares.
Medical Insurance: In December 2003 a professional woman telephoned SAGA with a view to taking out private health insurance; she was asked if she suffered from any chronic physical disorder, to which she replied that she suffered from ME. The reflex response of the clerk was “Oh, that’s not a physical disorder”.
Illustrations of Wessely’s influence over the international perception of ME/CFS
Wessely’s influence is not restricted to the UK; of many available, just two illustrations (one from Australia and New Zealand and one from Canada) are presented here.
The Australian CFS Report 2002 (Chronic fatigue syndrome: Clinical practice guidelines ---2002. Report of a Working Group convened under the auspices of the Royal Australasian College of Physicians. Medical Journal of Australia 2002:176: S17-S55). This Report virtually echoed the UK Joint Royal Colleges’ Report of 1996 and was comprehensively condemned as seriously flawed. One typical review is that of Dr Abhijit Chaudhuri, DM, MD, MRCP(UK), Clinical Senior Lecturer in Neurology, University of Glasgow and Consultant Neurologist who specialises in ME/CFS: “This document contains many flawed statements and observations (and) the accounts appear biased and inaccurate. I have deep concerns about the selectivity of the literature review. The document has over-emphasised the behavioural model and has failed to review the appropriate literature on the neurology. The paper has devoted much of its clinical discussion on the comparison of psychiatric disorders with CFS. The quality of references and review on the neurological aspect of CFS is very poor, with omissions of research carried out by international groups in the past three or four years. The cited references show a skewed representation of a group of psychiatrists. The guidelines show a preference for cognitive behaviour therapy and graded exercise therapy and ignore criticisms and the flawed designs of the trials upon which their success has been claimed. Many areas of the text appear highly opinionated in favour of the psycho-behavioural model of CFS. The document cannot be recommended since it does not reflect the cumulative base of knowledge on CFS”.
Notwithstanding intense international criticism, it was this same Australian Report that formed the basis of the MRC’s 2003 Report on the direction of future research in ME/CFS from its Research Advisory Group (see below).
A Canadian reference book: Whiplash and Other Useful Illnesses (a medico-legal reference book by Andrew Malleson, published in 2003 by McGill-Queen’s University Press, Montreal and London). This supposed reference book is one of the worst in existence and is a shameful display of ignorance on the part of its author. He cites Wessely in his references and in the chapter headed “Finessing Whiplash: Copycats and Fashionable Illnesses” vents his undisguised venom on ME/CFS patients :
“Somatizers had dropped neurasthenia like a hot brick, Fatigued somatizers needed a new diagnosis (so) they developed “chronic fatigue syndrome” (CFS) in North America and “myalgic encephalomyelitis” (ME) in the United Kingdom. Chronic fatigue syndrome has gone from strength to strength. In Britain in the mid 1950s, an apparent viral illness featuring muscle pains and severe fatigue hit 292 members of the staff at the Royal Free Hospital in London. The illness was well-publicized by the media and, in a familiar pattern, people all over the country soon came down with it; many are still doing so. The Royal Free epidemic was first christened “encephalomyelitis” but because no-one died, the illness was re-named “benign myalgic encephalomyelitis”. Its victims soon dropped the “benign” so the condition is now known simply as “myalgic encephalomyelitis”. Shorter comments “The disease label alone was a triumph of the longing for organicity over science”. At the end of the 1980s, conventional medicine focused on the acquired immunodeficiency syndrome of AIDS. AIDS left its victims in a chronic state of exhaustion. In the typical way that fashionable illnesses have of acquiring serious-sounding pathology, CFS quickly incorporated this concept. The chronically fatigued promptly renamed their illness “chronic fatigue and immune dysfunction syndrome (CFIDS), a condition satisfactorily endowed with all the pathological glamour of AIDS, but respectable. From the medico-legal point of view (lists produced by itemizers of symptoms) are a goldmine. They provide lawyers with symptoms over which they can litigate and healthcare practitioners with the ability to charge insurance companies for treating practically any symptoms of which a patient might choose to complain. Victims of CFS and ME, like the neurasthenics before them, are mostly young to middle-aged women from the middle and professional classes. Epidemics of ME, CFS (and) environmental hypersensitivity do not occur in the industrially underdeveloped countries. Fashions and affluence go together. Before the days of the welfare state, only the well-off could afford a fashionable illness, although as sickness benefits and compensation payments have made the luxury of pseudo-illnesses more accessible, these illnesses have trickled down the social pyramid. I have used the word “victim” to designate the sufferers of fashionable illnesses. I have done so deliberately, because these sufferers are quick to adopt the victim role. They often see themselves being harmed by members of the medical profession who inflexibly refuse to recognize the validity of their suffering. As well-educated members of the middle and professional classes, these victims are often vocal advocates for their own anguish. Despite their fatigue, literate victims of fashionable illnesses have displayed inexhaustible energy writing, arranging meetings and proselytising on behalf of their particular fashionable illness. Victims aim much of their copious literature at the unbelieving doctors and their callous disregard for such illnesses (because) in order to provide compensation or support, insurance companies and government social services require medical validation of the illness. Some doctors, perhaps out of a sense of scientific integrity, out of bloody-mindedness, or even, as the claimants for fashionable illnesses sometimes maintain, because of payments from insurance companies, refuse to validate these pseudo-illnesses. Responsible members of the medical profession have difficulty providing authentication when no evidence of any disability exists”.
Andrew Malleson was born and brought up in England but is now a psychiatrist with Toronto University Health Network; he is also psychiatric consultant to the Canadian Government Occupational Health and Safety Agency; his particular interest is in the uses and abuses of illness, especially illnesses that are intentionally or unconsciously feigned. He has done medico-legal work for the last 15 years.
Malleson seems entirely unaware of a well-recognised problem in modern medicine, namely, that medicine does not listen to patients any more, nor does it pay any regard to symptoms: it only respects laboratory results. Clinical practice (the very foundation of medicine) is now ignored. In a nutshell, there is a current misconception that evidence-based medicine means laboratory-based medicine, wherein objective clinical observation is accorded lower evidential weight than laboratory measurements. If no cutting-edge laboratory investigations are to be permitted (as is currently the case for ME/CFS patients), then the politically desired status quo will prevail and the advancement of medical science will continue to be actively obstructed by corporate control.
Tactics of denial
It is not only upon ME/CFS patients that Wessely School psychiatrists seek to impose their preferred but unproven psychotherapy regimes; other related conditions for which these particular psychiatrists promote their own regime include almost any syndrome for which medicine does not yet have an explanation of the exact, confirmed pathoaetiology, for example, fibromyalgia, multiple chemical sensitivity, chronic low-dose organophosphate poisoning, Gulf War syndrome, pre-menstrual tension, irritable bowel syndrome, and atypical chest pain. Psychiatrists of the Wessely School deny the physical reality of all these conditions, asserting that they are all one and the same psychiatric condition. (In the case of irritable bowel syndrome (IBS), it has now been shown not to be a “psychological” disorder at all: American researchers have demonstrated molecular alterations in serotonin signalling in the gastro-intestinal tract and that IBS is caused by altered gut biochemistry).
In relation to Gulf War syndrome, Wessely claims that Gulf War veterans have a three-fold increase in somatoform disorders: despite the fact that in the UK alone, over 500 formerly healthy, tough young men have died, Wessely denies the existence of any such syndrome and has advised the Ministry of Defence that one of the biggest risk factors for a soldier to develop ill-health following deployment to the Gulf is the fact that s/he knows another deployed person who has developed a similar illness.
Denial of the known and available evidence
Denial of existing evidence is currently popular by those who see themselves as “revisionists”, and such people are extremely dangerous, as they seem to believe that they and their like-minded colleagues alone have the prerogative to define reality.
On 29th April 2000 Channel Four transmitted a programme entitled “Denying the Holocaust” which revealed the tactics used by “deniers” of the truth (in that case, the reality of the Holocaust).
Whilst in no way comparing the suffering and atrocities imposed upon Holocaust victims with the suffering imposed upon those with ME/CFS by doctors who do not believe in it, it may nevertheless be salutary to examine the similarities in the tactics and methods used by “deniers” and “revisionists” of whatever discipline.
Referring to David Irving (the subject of the lengthy legal action involving Penguin Books and Professor Deborah Lipstadt, who was also the subject of the programme). Lipstadt branded Irving “one of the most dangerous of the men who call themselves revisionists”. The narrator said “familiar with (the)…evidence, he bends it until it conforms to his ideological leanings and political agenda”.
Such allegations have been made about Wessely in relation to what he publishes about ME/CFS.
Tactics used by “deniers” were identified in the programme as including the following:
manipulation, distortion, deliberately portraying things differently from what is known, falsifying facts, invention, misquotation, suppression, illegitimate interpretation, political re-modelling, exploiting public ignorance and intimidation.
Deniers take liberties with facts, and what is omitted is often more significant than what is included.
A falsifier uses many different means but all these techniques have the same effect ---falsification of the truth and denial of reality.
Other tactics include the following :
Tactics of denial used in relation to ME/CFS as a physical disorder
Revisionism and denying known evidence in medicine is nowhere more apparent than in the case of ME/CFS, and the choice of Government medical advisers is a matter of great economic impact.
To policy makers and physicians in a cash-strapped NHS, the advantages of denial must seem attractive. The last thing needed is a disease which threatens the health of hundreds of thousands if not millions world-wide, so accepting advice which promotes the view that the condition in question is neither new nor particularly disabling (and that the disorder is largely self-perpetuated) makes instant economic sense, especially if the advice also recommends that granting state benefits to those affected would be not only inappropriate but counter-productive.
In ME/CFS, denial is directed at undermining the experience and expertise of doctors who hold different views from Wessely School psychiatrists.
In medicine, denial ought to be very rare due to the peer-review system, but in the case of ME/CFS, many peer-reviewers and editors of journals appear to share the same views as the deniers, so that articles and research papers which show a lack of objectivity and which misrepresent the existing literature and which make unsubstantiated claims abound, with the consequence that readers are deliberately misled.
In the UK ME/CFS literature (mostly as a result of the assiduous activities of psychiatrists of the Wessely School), there is evidence of a systematic attempt to deny the severity of the symptoms, the role of external causes and the nature of the illness. Such is the profundity of articles, reports and research papers produced by this group of psychiatrists that there is now a widespread belief that ME/CFS is not a disorder which requires money to be spent on specialist tests or on expensive virological or immunological research, let alone on long-term sickness benefits.
It may be informative to compare the tactics of denial listed above as identified in the TV programme with a selection of methods and tactics used by those engaged in denial activity relating to ME:
In the case of ME/CFS, it seems apparent that the tactics of denial which were exposed in the Channel Four programme mentioned above are indeed being implemented by the psychiatrists of the Wessely School; out of the many available illustrations, just the following are provided:
The Joint Royal Colleges’ Report on CFS, October 1996
Like its successors from the same stable (the CMO’s Working Group Report of January 2002 and the MRC’s Strategy document of May 2003 – see below), this Report erroneously refers to CFS as being classified by the WHO in the ICD under “Mental and Behavioural Disorders” (F48.0), whereas in fact CFS is one of the terms by which ME is listed and is classified under Diseases of the Nervous System at G93.3.
It is worth noting that out of the 15 medical members of the joint working group, 12 were committed adherents of the Wessely School well-known for their entrenched views on ME/CFS, illustrations of which include the following:
Anthony David: “Doctor behaviour, such as sick certification, emerged as a significant contributor to the risk of chronic fatigue” (Predictors of chronic “postviral” fatigue. Lancet 1994:344:864-868).
Sean Lynch: “The original criteria for the chronic fatigue syndrome would exclude patients with any concurrent psychiatric symptoms, but as few patients would then meet this definition, these criteria were widened to include psychiatric morbidity” (Antidepressant therapy in the chronic fatigue syndrome. British Journal of General Practice 1991:41:339-342).
Anthony Pelosi: “The myalgic encephalomyelitis societies should not try to set the research agenda or shout down views with which they disagree” (Chronic fatigue syndrome and myalgic encephalomyelitis. BMJ 1994:309:276), It seems to be perfectly acceptable for psychiatrists to set the research agenda and to shout down views with which they disagree,
It is enlightening to compare Wessely School views as set out in the Joint Royal Colleges’ Report on CFS (CR54) of October 1996 (known to have been dominated by Wessely) with an American Report of the same time (Chronic Fatigue Syndrome: Information for Physicians. NIH Public Health Services, US Department of Health and Human Services, September 1996).
For example, with regard to children, the American Report states on page 7 that it advocates a “supportive approach” but the UK Report states that children may need to be forcibly removed from their parents, stating “CFS in children covers a broad spectrum of problems, even Munchausen’s by Proxy Syndrome” (10.2).
The American Report states on page 8 that “the physician should work with the school to limit class time, if necessary, and to resume school attendance gradually”, but the UK Report urges “an immediate return to school” (10.12).
The American Report advises “Home tuition may be an alternative” but the UK Report states “School phobia is important as a complication of CFS” (10.8) and “We discourage home tuition” (10.12).
The American Report points out (on page 3) that “It is important to note that about 40% of carefully evaluated CFS patients do not have depression or other psychiatric illness”, but the UK Report asserts that 75% of all CFS patients do have psychiatric illness (Summary for commissioners, page 45).
The American Report states (on page 3) that “some studies have found a significantly greater prevalence of allergy in CFS patients (and) patients report a worsening of allergic symptoms or the onset of new allergies after becoming ill with CFS”; on page 9 it refers to “the high prevalence of allergies in the CFS population”, but the UK Report describes CFS patients who have “food allergies (or) chemical sensitivities” as fulfilling the criteria for somatisation disorder (7.9); significantly, the authors refer to “food allergy” in inverted commas, thereby indicating their disdainful non-acceptance of food allergy as legitimate.
The UK Report authors are adamant that “We see no need for the creation of specialist units” (12.1); that “We do not think that specific guidelines on the management of CFS should be issued for general practitioners” (12.4) and that “In CFS, the greater the number of somatic symptoms, the greater the probability of psychiatric disorder” (7.11)
The UK Report authors are unequivocal that “there is no justification” for the use of neuroimaging studies because ‘abnormalities’ require careful interpretation (and may be) of little consequence” (7.13); this might be compared with what the foremost UK researcher in nuclear medicine, Dr DC Costa of UCL Medical School, believes about the abnormalities found in ME, namely that the hypo-perfusion of the mid-brain seen in ME is more severe than in AIDS encephalitis, or indeed in any other brain disease he has examined since 1985.
The UK Report authors specifically advise against looking at immunological parameters since “revealed changes (are) rarely substantial” (8.9), and in their Summary for commissioners they conclude that “No investigations should be performed to confirm the diagnosis”.
Predictably, the authors state that the “aims of assessment” should “elicit the beliefs and fears of patient and family (and) identify psychological distress” (8.12).
The UK Report authors state “We have concerns about the dangers of labelling someone with an ill-defined condition which may be associated with unhelpful illness beliefs” (9.2): ME is classified by the WHO as a neurological disorder, so it is hardly an “unhelpful illness belief” as these psychiatrists claim it to be.
The American Report states on page 6 that “Patients with CFS should be treated with compassion”, but the message of the UK Report is clear --- ME does not exist; CFS patients must not be gratified on any level and their aberrant beliefs that they are physically sick must be corrected by compulsory psychotherapy.
Of note is that out of the 256 cited references, almost half were by the same or associated group of authors and included nine which had not been published or reviewed.
Requests that the flawed Joint Royal Colleges’ Report be withdrawn were made at the highest level but were refused. The damage done by the Joint Royal Colleges’ Report is still reverberating on the UK ME community, but it is notable that at a “CFS” event at the Royal College of Physicians in January 2003, the current President (Professor Carol Black) indicated that more had been learnt since the publication of the Joint Report. Informed attendees refrained from pointing out that much had been learnt long before the 1996 Joint Report was published but that the available knowledge base was comprehensively rejected by the report’s authors.
The CMO’s Working Group Report on “CFS/ME”
It was as a result of the obvious bias and mis-information which the Joint Royal Colleges’ Report contained that the CMO set up the supposedly “independent Working Group” in 1998, whose Report was published in January 2002. Sadly, its membership was far from “independent” and was dominated by the Wessely School psychiatric lobby including Simon Wessely himself, Peter White, Anthony Cleare and Trudie Chalder, supported by child psychiatrist Elena Garralda and Harvey Marcovitch (a paediatrician and editor of Archives of Disease in Childhood and well-known for his article in the BMJ fo