CORPORATE COLLUSION?
The UK Medical Research Council has a secret file on Myalgic Encephalomyelitis (ME) that contains records and correspondence since at least 1988; the file is held in the UK Government Archive at Kew and cannot be opened until 2023. This present document is an overview of the misinformation and contradictions about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) that have pervaded some UK Departments of State and other agencies since 1988. It also considers the involvement of certain UK psychiatrists who have proven vested interests in the propagation of this misinformation that is contrary to world-wide scientific evidence and that for two decades has resulted in the medical abuse of UK patients with ME/CFS.
Professor Malcolm Hooper Eileen Marshall Margaret Williams
Contact address: malcolm.hooper@virgin.net
SEPTEMBER 2007
Introduction………………………………………………………………………........….. 2
Terminology………………………………………………………………………...…….. 3
Classification……………………………………………………………………………… 4
Current Government Policy (based on the Wessely School beliefs)………………….. 4
The reality and nature of ME/CFS……………………………………………………… 5
Two major but under-reported changes in relation to patients with ME/CFS……… 8
The Wessely School control of ME/CFS issues………………………………………… 10
The Wessely School and ME/CFS patients’ charities…………………………………. 11
Promulgators and purveyors of misinformation……………………………………… 16
Consequences of opposing the psychiatric ideology…………………………………… 17
The UK National Health Service – Similarities with Russian State Psychiatry?…… 17
The role of State Authorities in disseminating misinformation about ME/CFS
and their role in State-sponsored abuse of patients…………………………………… 18
The Centre for Reviews and Dissemination…………………………………………… 19
The NHS Information Authority (now the Information Centre)……………………… 19
The National Institute for Health and Clinical Excellence (NICE), including the Trent Institute Report…………………………………………………………….... 23
The Department of Health (including NHS Plus Policy Guidance and the National Service Framework)………………………………………………………........ 39
The Department for Work and Pensions………………………………………………… 43
The Medical Royal Colleges and The Royal Society of Medicine…………………….. 47
The Science Media Centre……………………………………………………………….. 51
NHS Direct………………………………………………………………………………… 52
The Medical Research Council (including the House of Commons Inquiry into the influence of the pharmaceutical industry “Big Pharma”)……………………. 52
The UK Medical Journals including the Medical Trade Journals……………………… 83
Tactics of Denial…………………………………………………………………………. .. 89
Conclusion…………………………………………….……………………………………. 99
CORPORATE COLLUSION ?
Introduction
One particular question in relation to the plight of patients with ME in the UK keeps recurring: who is driving the persistent denial of the evidence that ME is a multi-system biomedical disorder and not a behavioural disorder?
Does responsibility lie with the “Wessely School” psychiatric lobby (a small but influential group of mental health professionals led by Professor Simon Wessely of Kings College Hospital and the Institute of Psychiatry, London), or is it the other way round, with this psychiatric lobby acting as willing front men for covert State control of those with ME/CFS who are openly referred to as the “undeserving sick”? This term was used in 1999 by Wessely School psychiatrist Professor Michael Sharpe:
“Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment. Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service” (“ME: what do we know (real illness or all in the mind)?” Lecture given at the University of Strathclyde, October 1999).
These psychiatrists seem to be clearly in breach of the first tenet of medicine --- first do no harm--- in that by their words and deeds they have wreaked havoc in the lives of ME/CFS patients and their families by their arrogant pursuit of a psychiatric construct of the disorder which ignores the abundant clinical and scientific evidence (widely presented in the international medical and scientific literature) of the organic nature of ME/CFS.
There have been persistent and frequently covert attempts by these psychiatrists to subvert the international classification of this disorder from neurological to behavioural, with destructive consequences for those affected.
To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support.
Influenced by these psychiatrists, Government bodies such as the Medical Research Council have continued to propagate the same falsehoods with the result that patients are left without any hope of understanding or of health service provision or delivery, and Government funding into the biomedical aspects of the disorder is non-existent.
This coterie of psychiatrists has proven affiliations with corporate industry and has insidiously infiltrated all the major institutions, directing funding for research into an exclusively psychiatric model of the disorder, focusing on “management strategies” involving psychiatric techniques, even though such techniques have been shown to be at best of no lasting value and at worst to be harmful to patients with ME/CFS.
Nothing eradicates or changes what has been published time and again by Simon Wessely and his associated about those with ME/CFS, or the untold harm that he and his group of mental health professionals have caused to such very sick people.
Wessely School psychiatrists have published many articles denigrating those with ME, repeatedly claiming (whilst producing no supportive evidence) that there is “secondary gain” from “adopting the sick role”, and that once their incapacity has been “legitimised” by being given a medical label, patients with ME can then “manipulate” those around them to do their bidding, and that legitimising their “tiredness” absolves the sufferer from any sense of guilt for being a failure.
These psychiatrists see cognitive behavioural therapy as a brain-washing technique to rid patients of their “aberrant” belief that they are suffering from an organic multi-system disorder.
Wessely is on record as asserting that ME is merely a “belief” held by those who think they suffer from it; that ME patients’ muscle weakness is “simulated”; that efforts are made to over-interpret laboratory findings; that the average doctor will see ME patients are neurotic and will often be disgusted with them; that blaming a virus for the illness conveys advantages by protecting the victim from personal blame; that symptoms are simply normal sensations and are the result of “body-watching”; that ME is a “myth”; that ME is “learned helplessness”; that once validation is granted by a doctor, the ME patient may assume the “advantages of the sick role -- sympathy, time off work, benefits etc”; that ME symptoms have no anatomical or physiological basis; that patients’ aberrant beliefs are maintaining factors and that patients with ME exert a large and avoidable financial burden on health and social services.
(For individual references, see the December 2003 Briefing Paper for the House of Commons Health Select Committee: The Mental Health Movement: Persecution of Patients? which is available online at
http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm ).
Wessely rarely visits those who are house or bed-bound and he never considers those who have no-one at all even to speak to, let alone to attempt to “manipulate” to do their bidding, and who are reduced to a bare existence in truly dire circumstances.
He fails to consider that sufferers who have a conviction that they have a physical disorder may not be suffering from “dysfunctional thinking” or from “psychosocial denial”. Indeed, doctors who have set views regardless of the facts may themselves qualify as dysfunctional thinkers.
Powerful minority groups such as the Wessely School should not be allowed to determine public policy without there being some external moderation.
Merely to state that there is “medical disagreement” over ME/CFS is not enough: people in positions of power are misusing that power against sick people and are using it to further their own vested interests, but no-one in authority is listening, at least not until they themselves or their own family join the ranks of the psychiatrically-persecuted, when they too come up against a wall of utter indifference.
Most of what follows is already in the public domain but needs to be reiterated again and again to prevent it from being expediently “buried”, a ploy much favoured by New Labour for dealing with unpalatable facts.
The obfuscation of terminology by the Wessely School and their repeated misclassification of ME as a mental disorder is a significant component of the current dilemma facing UK patients with ME. Wessely School psychiatrists refer to CFS, ME, CFS/ME and chronic fatigue interchangeably, when there is abundant evidence that they are not the same, as was recognised by the American Medical Association as long ago as 1990 (JAMA 1990: AMA Science News Editor: correction to July 4th Issue).
In the World Health Organisation International Classification of Diseases -- to which the UK is a signatory and is therefore bound by it – myalgic encephalomyelitis (ME) has been classified as a neurological disorder since 1969. In the 1992 revision (ICD-10) chronic fatigue syndrome (CFS) is listed as a synonymous term for ME and both terms are listed in the neurological diseases section at G93.3, hence the disorder is referred to as ME/CFS. Another listed synonym is Postviral Fatigue Syndrome (PVFS).
Other states of on-going or chronic “fatigue” are listed under mental (behavioural) disorders in the psychiatric section at F48.0, a category from which ME/CFS is expressly excluded by the WHO. Those psychiatric states include the out-dated term “neurasthenia”, which Wessely insists is identical to “CFS”; he is on record as wishing to reintroduce the concept of neurasthenia (which fell into disuse in the UK over 100 years ago).
Substantial evidence exists that it is the intention of the Wessely School that ME should disappear and that “CFS” will refer to numerous psychiatric states of on-going tiredness or chronic “fatigue”, including neurasthenia. Such thinking focuses only on “fatigue” as a component of ME and wholly ignores the published evidence of biomedical abnormalities ie. the significant body of evidence that ME is a complex multi-system organic disease with, for example, evidence of unique pathology in the blood vessels.
Just a single quotation from Simon Wessely encapsulates his belief about ME/CFS: in a paper on “medically unexplained symptoms”, Wessely stated: “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).
ME/CFS however, is not a functional somatic syndrome.
The correct classification of a disorder is important.
Accurate classification of a disorder matters because it defines medical understanding of that disorder and leads to correct investigations, treatment and management.
NHS service provision is based upon classification codes and NHS software systems use ICD-10 to encode diagnostic data for use in statistical reporting, thus the correct code impacts upon NHS service provision and upon the delivery of appropriate and necessary medical care: national provision of NHS facilities by commissioning officers may be based on the use by admitting consultant clinicians of the correct ICD code. If no-one with ME/CFS is admitted to hospital under the G93.3 code, it will reinforce the non-provision of appropriate services for such patients, thus perpetuating the vicious circle of NHS neglect.
Further – importantly -- mental disorders are excluded from certain State and medical insurance benefits.
In 2001 the US Centres for Disease Control pointed out that basic laboratory tests are insufficient for ME/CFS patients because it is known that routine screening is normal in 90% of such patients, thus highlighting the need for sub-grouping and for more complex investigations such as immunological assays, nuclear medicine screening and gene expression profiling (Co-Cure RES: NOT: 17th July 2001).
In the UK, however, 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.
The illustrations below provide examples of the Wessely School’s many attempts to reclassify ME as a mental disorder. In the meantime, this psychiatric lobby refers to “CFS/ME”; on their own admission this is to patronise patients with ME, asserting that patients prefer the term “ME” because it sounds more serious but that doctors -- with their superior knowledge -- use the term “CFS”.
There is no doubt whatever that Wessely School psychiatrists use the terms “ME”, “CFS”, “CFS/ME” and “chronic fatigue” interchangeably, asserting that the WHO classifies it as the same disorder in two different sections of the ICD-10, once as a physical disorder (G93.3) and again as a mental disorder (F48.0).
This has been categorically refuted in writing by the WHO and on 11th February 2004 the UK Health Minister (then Lord Warner) was obliged to confirm in writing that the WHO classification of ME/CFS is as a neurological disorder.
This confirmation has had no effect upon the Wessely School and Departments of State to which they are advisors: ME/CFS continues to be listed throughout the NHS as the mental disorder “CFS/ME” (see below), even though the WHO classification renders such a classification factually incorrect.
At the launch by the US Centres for Disease Control in November 2006 of its “Toolkit” to promote better awareness of the reality of ME/CFS, Anthony Komaroff, Professor of Medicine at Harvard, said there are over 4,000 papers on the biomedical nature of ME/CFS. This extensive medical literature spans over 60 years. No-one who is aware of this wealth of information can credibly doubt the reality, the validity and the devastation of this organic multi-system disease.
Although the precise cause(s) is yet to be determined, the symptoms of ME/CFS are not “medically unexplained” and it remains beyond reason that the existence of so many documented abnormalities in people with ME/CFS should simply be disregarded and denied, including the following:
The above list is by no means comprehensive but merely gives an overview of documented abnormalities seen in ME/CFS that can be accessed in the literature, as well as in the abstracts and reports of international Clinical and Research Conferences ( http://www.meactionuk.org.uk/ME_Exists_-_True_or_False.htm ).
The evidence is there, and to deny it is to deny reality. However, it is easier to deny the evidence if the tests necessary to prove these abnormalities are proscribed, as is the case in the UK.
How can symptoms that clearly indicate significant pathology be so constantly dismissed and sufferers be so constantly denigrated by certain psychiatrists, given the nature of the problems presented? These include not only the watered-down subjective descriptions of “fatigue”, sore throat, cognitive impairment and altered sleep patterns, but organic symptoms that ought to be unmissable, even by psychiatrists, for example:
extreme malaise; abdominal pain and diarrhoea; post-exertional exhaustion almost to the point of collapse; inability to stand unsupported for more than a few moments – this is absolutely diagnostic of ME; sometimes too weak to walk (different from deconditioning); inability to walk upstairs or to maintain sustained muscle strength, as in repeated brushing of hair with arms elevated, or inability to carry a shopping bag, or dry oneself after a bath, peel vegetables or prepare a meal; neuromuscular incoordination, not only of fine finger movement with clumsiness and inability to control a pen and to write legibly, but also of the larynx and oesophagus -- a frequent complaint is the need to swallow carefully to avoid choking; oesophageal spasm and pain; dysequilibrium ie. loss of balance; staggering gait (ataxia); bouts of dizziness and frank vertigo; difficulty with voice production, especially if speaking is sustained; aphasia (inability to find the right word); muscle cramps, spasms and twitching; black-outs and seizure-like episodes; spasmodic trembling of arms, legs and hands; episodes of angor animi (brought about by abrupt vasomotor changes that cause the sufferer to have uncontrollable shaking, like a rigor, and to think they are at the point of death) – it is essential to understand the terror that such attacks induce in a patient, and no patient can fake them; photophobia; difficulty focusing and in visual accommodation, with rapid changes in visual acuity; blurred and double vision, with loss of peripheral vision; eye pain; swollen and painful eyelids, with inability to keep eyelid open; tinnitus; hyperacusis, for example the noise of a lawnmower can cause acute distress and nausea; heightened sensory perception (for example, acute sensitivity to being patted on the back; inability to tolerate lights, noise, echoes, smells, movement and confusion such as found in a shopping mall or supermarket without being reduced to near-collapse); frequency of micturition, including nocturia; peripheral neuropathy; numbness in face; altered sleep patterns, with hypersonmia (in the early stages) and insomnia (in the later stages); alternate sweats and shivers; temperature dysregulation, with intolerance of heat and cold; parasthesias; sleep paralysis; intermittent palindromic nerve pains; tightness of the chest alternating with moist chest; muscle tenderness and myalgia, sometimes burning or vice-like; typically shoulder and pelvic girdle pain, with neck pain and sometimes an inability to hold head up; orthostatic tachycardia; orthostatic hypotension, and symptoms of hypovolaemia, with blood pooling in the legs and feeling faint due to insufficient blood supply to the brain; labile blood pressure; intermittent chest pain akin to myocardial infarct; segmental chest wall pain; subcostal pain; vasculitic spasms, including headaches; cold and discoloured extremities, with secondary Raynaud’s; easy bruising; peri-articular bleeds, especially in the fingers; shortness of breath on minimal exertion; the need to sleep upright because of weakness of the intercostal muscles; pancreatic exocrine dysfunction leading to malabsorption; rashes (sometimes vasculitic in nature); flushing of one side of the face; ovarian-uterine dysfunction; prostatitis; hair loss and mouth ulcers that make speaking and eating difficult. The notable point about symptoms in ME/ICD-CFS is their variability. All the above symptoms and more are documented in the literature; they bear little resemblance to “chronic fatigue” or to a “continuum of on-going tiredness”.
It is, of course, the Wessely School psychiatrists’ view that such multiplicity of symptoms confirms their belief that ME/CFS is a somatoform disorder. If these psychiatrists do not acknowledge and identify such symptoms, they are either not seeing patients with ME/CFS (so therefore should not describe their studies and results as pertaining to those with “ME”) or are comprehensively failing in their professional responsibilities towards such patients.
In an article written in 2001 attention was drawn to two major but under-reported changes that were taking place in the UK. It was written partly in response to Simon Wessely’s article (Functional Somatic Syndromes: one or many? Lancet 1999:354:936-939) in which he wrote: “Functional somatic syndromes (chronic fatigue syndrome, multiple chemical sensitivity, fibromyalgia, irritable bowel syndrome and tension headache) are associated with unnecessary expenditure of medical resources. If we accept that functional somatic syndromes are considered together, we open the way for more general strategies for their management”.
The article noted that on 19th November 1996 Britain was a signatory to the preliminary draft of the Council of Europe Strasbourg Convention on Human Rights and Biomedicine. This conveyed certain rights on member states who signed the final document. Those conferred rights included provision for drug and other medical trials on human beings which, in certain groups of people, could be carried out without the individual’s consent. One of those groups is people who are deemed to be mentally ill. The Convention stipulated that in certain situations, “general interests” will take priority over those of the individual.
The article pointed out that at the same time, reform of the UK Mental Health Act (1983) was under way (Green Paper: Reform of the Mental Health Act 1983: Proposals for Consultation, November 1999). Proposals were drawn so widely that they would give psychiatrists far greater powers to enforce compulsory psychiatric treatment upon both adults and children, including giving psychiatrists powers to drug people (including children against the will of their parents) if they have “any disability or disorder of mind or brain, whether permanent or temporary, which results in an impairment of mental functioning”. The chilling inclusion of the words “or brain” was noted, as this would include people with incurable neurological disorders such as multiple sclerosis, Parkinson Disease and motor neurone disease, the support of whom costs the State considerable amounts of money for no economic return. The article questioned whether or not ME would be included, particularly if the psychiatric lobby were to be successful in reclassifying it as a mental disorder, and quoted from a letter dated 4th May 2000 from the Minister of State at the Department of Health, John Hutton, which did not completely rule this out: “it is highly unlikely that (CFS/ME) sufferers would qualify for detention under the Act even if it were to be reclassified as a mental rather than a physical disorder”.
The article noted that already in the UK, children and adolescents with ME were being forcibly removed from their parents and placed in psychiatric care, sometimes with the backing of a Court Order.
In April 1999, Dr Nigel Speight, Consultant Paediatrician at the University Hospital of North Durham and an acknowledged expert on ME/CFS, had reported that the frequency of psychiatrists diagnosing Munchausen’s Syndrome by Proxy in parents of children with ME/CFS amounted to an epidemic, and this was reported by the ME Association in the Autumn 1999 issue of Perspectives.
On 11th July 2001, the Daily Telegraph published an article which clearly showed that children and adolescents were being forcibly removed from their parents and placed in psychiatric “care”, sometimes with the backing of a Court Order (How the law is being used to force treatment on children – parents of ME sufferers are being victimised by the Children Act. The Countess of Mar; Daily Telegraph, 11th July 2001).
Wessely was first involved in this practice in 1988, just two years after he obtained his MRCPsych, when on 3rd June he wrote about 12 year old Ean Procter: “I did not perform a physical examination but was told there was no evidence of any physical pathology”. Ean had lost the ability to speak, which Wessely asserted was “elective mutatism” (sic). Wessely wrote: “I have considerable experience in the subject of ‘myalgic encephalomyelitis’. I feel that Ean needs a long period of separation from his parents. For this reason, I support the application made by your department for wardship”. On 10th June 1988 Wessely provided another report on Ean Procter, in which 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 (and) requires skilled rehabilitation to regain lost function. I therefore support the efforts being made to ensure Ean receives appropriate treatment”. After his signature, Wessely wrote: “Approved under Section 12, Mental Health Act 1983”. That same month, without ever having spoken to Ean’s parents, social workers supported by psychiatrists, armed with a Court Order that had been specially signed on a Sunday and in the presence of police officers, forcibly removed the sick child from his distraught parents.
Wessely’s involvement with the wardship of Ean Procter is incontrovertibly established, yet in a Channel 4 News programme on 26th August 1998 in which the forcible removal of another child with ME/CFS was being discussed, when asked by the presenter Sheena McDonald if there can ever be a case for the coercive approach in situations involving the forcible removal of a child with ME/CFS from the parents, Wessely replied: “I think it’s so rare. I mean, it’s never happened to me”. Wessely’s elective amnesia was broadcast on national television for all to see.
The 2001 article wondered if those two momentous changes determined the intended direction of Government policy and asked if this explained why Professor Anthony Pinching, then Deputy Chair of the Chief Medical Officer’s Working Group on “CFS/ME”, had said on 7th June 2000 at the Sounding Board Event at the Department of Health in London that there was no need for research into “CFS/ME”? (see below for Professor Pinching’s published views on “CFS/ME”).
The article also asked if those proposed changes explained why, despite compelling international evidence of biomarkers of organic pathoaetiology, Wessely and colleagues appeared to have carte blanche in all matters relating to ME/CFS, and if this likely direction of government policy underlay the directive of denial?
The Mental Health Act 2007 received Royal Assent on 19th July 2007.
For over two decades, in their role as advisers to Government Departments, Wessely School psychiatrists have been tirelessly influencing Government Ministers and Departments of State on behalf of their paymasters, known to be Big Pharma and the medical insurance industry, about what they term “medically unexplained” disorders, notably ME/CFS and Gulf War Syndrome, both of which they assert do not exist.
Simon Wessely, Michael Sharpe, Peter White -- and to a lesser extent their colleague Anthony Cleare -- are deeply involved with the medical insurance industry. Written evidence exists showing that claims for “CFS/ME” are inter-referred amongst themselves, and that claimants are coerced into being assessed only by this group of psychiatrists. Claimants are told: “If you agree to see (Dr) Michael Sharpe, we will agree to be bound by his opinion”, when the insurance company knows full well that Sharpe lectures to insurance companies, business schools and employers, advising that those with ME/CFS seeking payment of benefit under their policies “should not qualify for such payments”. Is it justice for Sharpe to be paid by insurance companies when he directly or indirectly advises the non-payment of claims for patients with ME/CFS? It was on 17th May 1995 that Wessely, Sharpe and Wessely’s colleague, behaviour therapist Trudie Chalder, all spoke at a Business Symposium in London attended by UnumProvident’s Dr John LoCascio: information presented included informing attendees that ME/CFS has been called ‘the malingerer’s excuse’. Extracts from UnumProvident’s “Chronic Fatigue Syndrome Management Plan” are pertinent: “Diagnosis: Neurosis with a new banner. UNUM stands to lose millions if we do not move quickly to address this increasing problem. Attending physicians (must) work with Unum rehabilitation services in an effort to return the patient / claimant back to maximum functionality with or without symptoms”.
This important issue of vested interests has been repeatedly raised in the House of Commons, most recently in the 2006 Report of the Gibson Inquiry (see below), and Members of the Scottish Parliament have written to Allied Dunbar about their concerns over Michael Sharpe’s suitability to give an unbiased view when assessing people with ME/CFS; Sharpe has asked MSPs to withdraw their statements to Allied Dunbar about him.
The ME Association: that Wessely School psychiatrists have sought absolute control of the ME situation is beyond doubt. Almost 20 years ago, Professor (then Dr) Simon Wessely wanted to become Medical Adviser to the ME Association and was recommended for the post by the then Medical Adviser Dr David Smith. Dr Melvin Ramsay’s response as President of the ME Association was “over my dead body”. Dr David Smith left his position at the ME Association and Dr Charles Shepherd took over as Medical Adviser.
Shepherd brought with him different (but perhaps related) problems in that he is, on his own admission, an active member of HealthWatch, an organisation that has received funding from both Big Pharma and the medical insurance industry. Simon Wessely has had connections with HealthWatch since its inception in 1989; soon after the press launch, he was listed as one of its leading campaigners. In its literature, one of its clearly-stated aims is to oppose “diagnoses that are misleading or false, or that may encourage unnecessary treatment for non-existent diseases”, and Wessely assiduously teaches that ME is a non-existent disease.
Despite its vehement denials -- including intimidatory letters sent by its lawyers inexplicably refuting its own literature -- HealthWatch (which started life in 1989 as the Quackbusters Campaign Against Health Fraud) has an indisputable and documented track record of opposing alternative and complementary medicine and of promoting pharmaceutical interventions as the best way of ensuring public protection. It is a matter of record that patients with ME/CFS are unable to tolerate pharmaceutical interventions; given the lack of NHS care apart from psychotherapy, they not unnaturally turn to alternative and complementary practitioners in their efforts to find some relief from their distressing symptoms, so Shepherd’s role in the ME Association has been controversial.
In particular, it is difficult to understand Shepherd’s strong opposition to advanced investigations for those with ME, notably nuclear imaging, immunological assays and testing for RNase L and other anti-viral pathways, all of which provide evidence of the biomedical nature of ME/CFS. On 17th July 2001 Shepherd wrote to the Chief Medical Officer confirming his opposition to such testing. People with ME/CFS have incredibly up-regulated interferon production (that is what the RNase activity literature is all about), so on what evidence does Shepherd (a part time private GP) oppose such testing, when internationally acclaimed ME/CFS experts – clinicians and academics alike – support it?
In his notes of the ME Alliance meeting held on 20th January 2005, Shepherd wrote: “I’m now going to reorganise what I’ve written, especially in the ‘call for research’ section. We decided not to campaign on the issue of finding a diagnostic test”.
Most people hold the view that until there is a diagnostic test for ME/CFS, the plight of those suffering from it will not improve.
Action for ME: the other main UK patients’ charity, Action for ME (AfME), has had a chequered history. In September 1993 it changed its name and logo to “Action for ME and Chronic Fatigue”. Complaints were made to the Charity Commission and the charity subsequently dropped “Chronic Fatigue”. On 24th July 2003, in a statement approved by its Council of Management, the charity announced that it is funded by the Department of Health.
Psychiatrist Michael Sharpe (infamous for his “undeserving sick” comment quoted above) is one of its medical advisers, though his name does not appear on the charity literature. It is well-known that in UnumProvident’s Chief Medical Officer’s Report (Trends in Disability, December 2002) Sharpe wrote: “Functional symptoms are not going to go away. Privatised doctors will collude with the patient’s views that they have a disabling and permanent disease. An increase in insurance claims is to be therefore anticipated. It will be imperative that social policy addresses this problem. This will not be easy. However, there are glimmers of progress. One of the major patient charities, Action for ME, is aligning itself with a more evidence-based approach. If this convergence of rehabilitation-orientated clinicians and a patient’s advocacy group is successful, there could be very positive implications for insurers”.
This liaison is encapsulated in the statement by Lord Turnberg (the former Sir Leslie Turnberg, President of The Royal College of Physicians): “The largest patients’ charity, Action for ME, is working closely with Wessely and his colleagues on new research initiatives funded by the MRC and the NHS” (Hansard [Lords]: 22nd January 2004: Vol 656: No. 27:1186). It was under the auspices of Turnberg that the biased and highly flawed 1996 Joint Royal Colleges’ Report CR54 on “CFS” was produced with his full support (see below).
Professor Anthony Pinching is currently AfME’s Principal Medical Adviser. He is lead adviser on “CFS/ME” to the Department of Health and was responsible for allocating the £8.5 million grant from Government for the new “CFS” Centres that deliver only psychotherapy. His views on “CFS/ME” were set out in his article in Prescribers’ Journal in 2000:40:2:99-106, published when he was Deputy Chair of the Chief Medical Officer’s Working Group on “CFS/ME” (“CFS is not related to on-going exertion”; “the Oxford criteria are too narrow for clinical use”; “over-investigation can [cause patients] to seek abnormal test results to validate their illness”; “complementary therapists sometimes introduce or reinforce unhelpful illness beliefs”; “the essence of treatment is activity management and graded rehabilitation”).
In March 2001 AfME produced an excellent report, Severely Neglected: M.E. in the UK. This report was the result of a membership survey of 2,338 respondents, making it the biggest survey ever done on ME in the UK. Its confidential Preliminary Report of 28th February 2001 stated: “graded exercise was reported to be the treatment that had made most people worse” but in the published version, this was changed to reporting that graded exercise made 50% of respondents worse. This makes it all the more surprising that AfME “is working closely with Wessely and his colleagues on research initiatives funded by the MRC and the NHS” when those “initiatives” are based on graded exercise.
AfME’s report found that 77% of respondents experienced severe pain because of ME; nearly two out of three had received no advice from their GP on managing the illness; 70% were either never able, or were sometimes too unwell to attend a doctor’s clinic; 80% of those who were bedridden by ME reported that a request for a home visit by a doctor had been refused, and that many people did not receive State benefits to which they were clearly entitled and desperately needed in order to survive.
By aligning itself with the Wessely School, who have a 20 year published track record of denigrating patients with ME, AfME has done patients with ME a massive disservice and may well have devalued the charity’s own important report.
Michael Sharpe has a similar published track record to that of Wessely: he asserts that in “CFS/ME”, personality factors have been shown to perpetuate disability; that no immunological, virological or nuclear imaging tests should be carried out on such patients; that “the label of CFS avoids the connotations of pseudo-diagnoses such as ME”; that “change in belief is an important factor in recovery”; that psychosocial factors are important in “CFS”; that his own view has long been “the issues around CFS/ME are the same as those surrounding (patients) who suffer conditions that are not dignified by the presence of what we call disease”.
Peter White, another key member of the Wessely School, misinforms medical students and clinicians about ME/CFS: together with Anthony Clare, Professor of Clinical Psychiatry at Trinity College, Dublin, Peter White contributed the section on Psychological Medicine in the medical textbook that is likely to be on the desk of every GP in the UK as it won the ‘Highly Commended’ British Medical Association Award (Clinical Medicine: Kumar and Clark, 2004, 5th edition: published by Saunders: ISBN 0 7020 25798). It is promoted as “one of the most highly respected textbooks of medicine in the world. It is used by medical students and practising doctors, as well as by many other health professionals. It has been translated into several languages”. One of the editors is Parveen Kumar, Professor of Clinical Medical Education at St Bartholomew’s and The London, Queen Mary School of Medicine (ie. the same institution as Peter White). The entry for Myalgic Encephalomyelitis directs the reader to the entry for CFS, which in turn directs the reader to Section 21 (Psychological Medicine) where CFS/ME is listed under Functional or Psychosomatic Disorders: Medically Unexplained Symptoms. White and Clare assert that the psychiatric classification of these disorders is “somatoform disorder”, which the authors state were previously known as “ ‘all in the mind’, imaginary and malingering”.
It is only when dealing with “CFS/ME” (and Gulf War Syndrome) that these psychiatrists are regarded by Government bodies and the medical insurance industry as “experts”. These psychiatrists are on record as being actively involved in social engineering via the deliberate creation of “psychosocial” illness. They believe that the biomedical approach to healthcare (ie. that ill-health and disability is directly caused by disease and its pathological processes) is (quote) “a blind alley” and that the correct approach is the psychosocial one, in which “aberrant” thoughts, feelings and behaviour can be “modified” by their own brand of cognitive behavioural therapy with graded exercise (CBT/GET), resulting in restoration of health and productivity.
Such a retrograde belief is fallacious, as the regime in question has been shown to be ineffective and even the proponents of the regime are themselves on record as acknowledging that (i) it is not remotely curative (ii) modest gains may be transient and even illusory (iii) these interventions are not the answer to “CFS/ME” (iv) patients have a tendency to relapse and (v) evidence from randomised trials is no guarantee of treatment success.
For more information see www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf and for a detailed review of Wessely School indoctrination of State agencies, and the impact of this on social and welfare policy, see
www.meactionuk.org.uk/Proof_Positive.htm .
A 52 page booklet (Quotable Quotes about ME/CFS) containing referenced illustrations from the published works of Wessely, Sharpe and White on “CFS/ME” is available from the charity Invest in ME (01603 – 701980).
Wessely School views about ME/CFS are at odds with the view expressed by Dr Mark Loveless, Head of the AIDS and CFS Clinic at Oregon Health Services University, USA, who at a Congressional Briefing in 1995 said that an ME/CFS patient “feels effectively the same every day as an AIDS patients feels two weeks before death” – the only difference being that ME/CFS symptoms can go on for decades.
It seems that AfME may be unaware that American ME/CFS experts have concerns about Wessely’s approach: Professor Charles Lapp from the Hunter-Hopkins Centre, Charlotte, North Carolina, is on record as saying: “In my opinion, cognitive behavioural therapy is widely maligned because of the British approach, which presumes that (ME)CFS has no organic basis and is therefore contradictory to current science. (The UK) type of CBT assumes that somatic symptoms are perpetuated by errant illness beliefs and maladaptive coping”. Professor Nancy Klimas from the University of Miami is on record as saying: “I don’t take the British view that CBT is the one thing you can do to effectively treat (ME)CFS”. Dr David Bell from New York is on record as saying: “I don’t refer (ME/CFS patients) to outside CBT therapy”. Dr Daniel Peterson, Medical Director of the Whittmore Peterson Neuro-Immune Institute, Nevada, is on record as saying: “Sending patients to therapists who don’t understand (ME)CFS isn’t something I’d comfortably do”. These quotations can be found in CFIDS Chronicle, Spring 2006.
At the ME Research UK international research conference held in May 2007 in Edinburgh, UK, Dr Ellie Stein, herself a psychiatrist, went on record about the MRC trials (see below) with which AfME has aligned itself: “It’s quite hard to watch millions of pounds being spent on a study that will tell us nothing”. Stein also said: “I would never in my practice use the Wessely model of cognitive therapy. I find it disrespectful to try to convince somebody they don’t have an illness that they clearly have”. Stein was supported by Professor Nancy Klimas, who said: “To dismiss people as not being real – that’s just rude”.
When promoting its (subsequently postponed) “Research Summit” in combination with the Medical Research Council in 2006, AfME made an extraordinary claim about its Research Summit being -- as far as AfME knew -- the first time that neurologists, immunologists, pain and sleep disorder specialists and others would be working together to explore innovative ways of tackling ME. This seemed to show remarkable ignorance of the many previous international medical conferences and workshops on ME(CFS) with the same aim -- known to number at least 24 -- that have been held over the last 18 years. Why would AfME (whose duty upon which its charitable status depends is to represent the best interests of its members) be unaware of this substantial body of existing knowledge about the disorder from which its members suffer? AfME, which started life as the ME Action Campaign, has had 20 years to get its act together but seems signally to have failed, not least by joining forces with the MRC, which categorises ME/CFS as a mental health disorder (see below in the section on the MRC). For a list of those conferences of which AfME seemed to be unaware, see
http://www.meactionuk.org.uk/Incessant_belief.htm
Unlike the ME Association, AfME has not held an Annual General Meeting at which members have voting rights since 1996.
Also unlike the ME Association (whose Ramsay Society Research Fund supports research), AfME decided not to fund-raise for research into ME; given that its members have no voting rights, on whose mandate was this decided?
Equally, given the charity’s founding mission (and mindful of its obligation to the Charity Commission, which requires a charity to be accountable, to be transparent, to provide reliable information to stakeholders that is free from bias, and to focus on stakeholders’ legitimate needs), why did its last Chief Executive Officer, Chris Clark, sign up to the Government policy set out in the NHS Plus Policy Document that is so damaging for those with ME (see below) when AfME refers to itself as “one of the main national ME charities”?
On 30th April 2007 Sir Peter Spencer KCB was appointed the new Chief Executive Officer of AfME. He was to give a talk on 3rd September 2007 in London; his talk was to be open to everyone, not just AfME members, and the flyer said: “We want this to be a constructive two-way process – your views matter!”. Why not restore voting rights to its members so that all of them can make their views known?
On 1st August 2007 Sir Peter’s assistant wrote on his behalf: “Action for ME continues to support the M.E. specialist services set up by the NHS in 2004”. A substantial body of evidence has been collated by Paul Davis of Research into ME (RiME) documenting the dismay, dissatisfaction and deep concern of ME/CFS patients about these “CFS” Centres. On 10th April 2007 Paul Davis wrote to AfME about the CFS Centres: “Last summer AfME launched a campaign to save the NHS “CFS/ME” Clinics. In AfME’s 8th August 2006 flyer you wrote ‘…there is overwhelming support from service users…’. Such a statement surely needs to be qualified by evidence. Can we see the evidence please? RiME has presented a contrasting view at recent All Party Parliamentary Group on ME meetings. There is a difference between our respective views – RiME’s is backed up by pages of evidence. Twelve pages are enclosed for your attention. This letter will be put in the public domain. We look forward to hearing from you”. The letter seems to have been ignored by AfME because five months later, RiME has received neither acknowledgment nor response. It is disturbing that AfME seems to disregard this first-hand evidence (see www.erythos.com/RiME ).
There is evidence that the “treatments” offered by the Government-funded new centres are psychiatrically biased and that the clinics appear to make no distinction between those with ME/CFS and those with other chronic fatigue states. Severely affected patients are not being catered for. One patient has described being put on gym machines and ending up in bed for several months – in a letter to the patient’s GP, psychiatrist Peter White from St Bartholomew’s Hospital, London, wrote that symptoms were the result of deconditioning, that fear and anxiety prevented the patient from exercising and that psychological factors contributed to the illness. It is reported that in the Greater Manchester area, a psychiatrist unknown to that area has come from nowhere and been made Head of the new “CFS/ME” service, with sufferers being told during cognitive behavioural therapy (CBT) sessions that they have a ‘fear of activity’ and ‘motivation problems’.
It has to be said that some people in the ME community do support the continuance of these Centres. At the recent Invest in ME International Conference held in London on 1st-2nd May 2007, the issue of these psychotherapy Centres arose; they were criticised by one speaker on the basis that they cannot possibly help those with complex neurological disease to recover, and the only management regime -- as distinct from treatment – that they offer could be potentially dangerous for some people with ME/CFS. However, one or two attendees believed that the Centres were better than nothing at all, and that the Centres should be supported by the ME/CFS community on the grounds that if patients do not attend these Centres, they will forfeit their entitlement to State and insurance benefits. When the Countess of Mar became aware of such a view, she was reported to have remarked that if this state of affairs is true, it is illegal.
Lady Mar was therefore asked directly if she had said this, and by email on 11th May 2007 she replied: “During the Committee Stage of the Welfare Reform Bill – debates from Clause 9 onwards in the Lord -- I managed to extract from the Minister statements to the effect that people with CFS/ME would not be forced to do CBT/GET in order to continue to get their benefits”. That debate is recorded in Hansard (Lords) on 28th February 2007, column GC198:
Countess of Mar: "If a group of people refuses graded exercise and cognitive behaviour therapy, on the basis either that they are afraid or that they know it will not help them, will they be penalised?"
Lord McKenzie of Luton (Parliamentary Under-Secretary, Department for Work and Pensions; Labour Peer): "there is no requirement for individuals to carry out any specific type of activity or treatment. That cannot be sanctioned".
AfME is involved in a forthcoming Collaborative Conference on 4th and 5th October 2007 in Milton Keynes on the implementation of the NICE Guideline on “CFS/ME” that was published on 22nd August 2007 (which promotes cognitive behavioural therapy and graded exercise for those with mild to moderate “CFS/ME”). The letter of 1st August 2007 on behalf of Sir Peter Spencer said about the Collaborative Conference: “I will of course be stressing our view that this is essentially a physical illness”. Does the WHO classify ME as “essentially” a physical illness? Many organic diseases, including multiple sclerosis and cancer, give rise to psychological distress but this does not mean they are “essentially” physical disorders – they are physical disorders, which by their very serious nature may give rise to psychological symptoms, just as may occur in ME/CFS.
Speakers at the Collaborative Conference are almost all members of the psychiatric lobby. On 12th July 2007 at the All Party Parliamentary Group on ME, Sir Peter said he did not understand why people are objecting to the choice of speakers.
Is it perhaps the case that Sir Peter has difficulty in understanding key issues? When on 12th December 2006 he appeared in his previous position as Chief of Defence Procurement before the House of Commons Defence Select Committee, Sir Peter did not excel himself in the Oral Evidence Session, as Questions 45 - 60; Questions 101 - 111 and Question 125 seem to demonstrate, for example:
Q46. Mr Jones (Kevan Jones MP): “You actually let a contract to Alvis Vickers”. Sir Peter Spencer: “I have no recollection”.
Q47. Mr Jones: “You are wrong because it did take place”.
Q52. Mr Jones: “Can I say, Sir Peter, I find it absolutely remarkable that you can come here today in charge of this programme and say that you did not know about (it). I know about it; industry knows well about it”.
Q56. Mr Jones: “A minute ago you told us you did not know about it. Now you are trying to describe what went on”.
Q59. Mr Jones: “Sir Peter, that is not true. If you are sitting here today and telling us that this was just part of this entire process, that is not the case. It’s no good coming here trying to wriggle out of it”.
Q101. (In response to a question from the Chairman, James Arbuthnot MP): Sir Peter Spencer: “That is really a question for ministers, I’m afraid”.
Q104. Mr Jones: “ No, it is not, Chairman”.
Q105. Mr Jones: “Why can you not tell us?”
Q106. Mr Jones: “Why can you not tell us? If you are prepared to tell industry what your estimate is, why are you not prepared to tell the House of Commons Defence Committee what your estimate is?”
Q109. Mr Jones: “I am sorry Chairman, I think that is bang out of order. We have got a civil servant here telling us that he is not prepared to give elected Members of Parliament who scutinise the Ministry of Defence information which he is quite happy to give to outside industry. I think it is disgraceful”.
Q110. Mr Jones: “Absolutely disgraceful”. Sir Peter Spencer: “No, it is not disgraceful”.
Q111. Mr Jones: “It is”.
Q125. Mr Jones: “How should we be able to see if you have been successful in delivering this programme if we are not going to get this information (because) you are being as evasive as you are?”. Sir Peter Spencer: “I am not being evasive….”.
Sir Peter's interrogation by the
Defence Select Committee can be accessed online at
http://www.publications.parliament.uk/pa/cm200607/cmselect/cmdfence/159/6121201.htm
If Sir Peter could seemingly mislead a Select Committee of astute MPs in deference to commercial interests, could he equally mislead sick people in deference to commercial interests?
Perhaps the responsibility between the Wessely School and the State is mutual: whatever the causal direction, the resulting situation is achieving its aim and is effectively paralysing State-funded scientific progress on ME/CFS, as well as compounding patients’ indescribable suffering and leading -- in an ever-increasing number of known cases -- to premature death, documented evidence of which has been presented to the Chief Medical Officer in person.
Using the denial of information as an instrument of power is an exceptionally effective strategy, especially when every avenue of dissemination of (mis) information about ME/CFS has been tightly secured to the extent that nothing but psychiatric propaganda can percolate the otherwise impenetrable information machine of the State.
Apart from Wessely School psychiatrists and adherents themselves, chief amongst the promulgators and purveyors of misinformation about ME/CFS are the Centre for Reviews and Dissemination at York; the NHS Information Centre (formerly the Information Authority); the National Institute for Health and Clinical Excellence (NICE); the Department of Health; the Department for Work and Pensions (DWP); certain Royal Colleges; the Science Media Centre; NHS Direct; the Medical Research Council (MRC), with whom Action for ME has also joined forces, as well as with the medical insurance industry, and the UK medical journals. Brief examples of their respective roles in the perpetration of misinformation about ME/CFS are included below.
All these bodies seem to have been contaminated by Wessely School misinformation about ME/CFS and to have embraced the Wessely School ideology that ME/CFS is a manifestation of aberrant illness behaviour that can be “modified” by a regime of psychotherapy. It is on record (by Michael Sharpe) that this particular “behavioural modification” regime was formulated by Wessely’s own group.
In the PRISMA company literature (a multi-national healthcare company which works with insurance companies by arranging “rehabilitation” programmes for those with CFS/ME), the regime is described as “a unique treatment programme” for “hopeless” cases, in which it expressly includes those with “CFS”.
In his article in the UnumProvident Report Trends in Health and Disability of December 2002, Michael Sharpe stated: “Funding of rehabilitation by commercial bodies has begun in the UK with organisations such as PRISMA and is likely to continue”. In the PRISMA Company Information, Simon Wessely is listed as a Corporate Officer. He is a member of the Supervisory Board and in order of seniority, he is higher than the Board of Management. He is listed as a “world expert” in the field of “medically unexplained illnesses, including Chronic Fatigue Syndrome”.
The consequences of opposing Wessely School ideology can be dire. When in January 2006 an organised peaceful protest was mounted outside a public lecture to be given by Professor Simon Wessely at Gresham College, London, some chilling incidents occurred. One day before the event, strange things had begun to happen. Staff at Gresham College began telling people that Wessely had cancelled his lecture. However, other information indicated that Wessely was secretly going ahead. It was said that Wessely claimed he had reason to believe he would be physically attacked. Total confusion ensued, with people returning home believing that the lecture had been cancelled, when in reality it was going ahead. At the event, the police were present and were photographing everyone present. The protest organisers had learned of Wessely’s public appearance only a week before the event but, on the day, they managed to display personal stories of people whose lives had been destroyed by Wessely’s ideas: some were harrowing, describing years of suffering, financial hardship, ridicule and abandonment by the NHS, family and friends as a result of Wessely’s theories. The protest organisers believed that by ignoring “the mountains of evidence about the physical causes of these syndromes, (Wessely) and his colleagues are personally responsible for suffering on a massive scale”, so they had set up a campaign called “Illness Denied” ( www.illnessdenied.org.uk ). On the day of the protest, the lead protester noticed unusual problems with her mobile phone. She also experienced problems with computer hacking (which in an official attempt to undermine her mental stability were ridiculed but which were later validated by an IT expert). The harassment included a threat placed on the internet directed at her children. She was subsequently arrested, with three police officers, two doctors, two social workers and a community psychiatric nurse arriving at her home unannounced with a warrant for her arrest. She was given no time to pack or to get in touch with a lawyer. She was then detained against her will under Section Two of the Mental Health Act 1983. She was kept on Pond Ward of the Central Middlesex Hospital for 30 days under appalling conditions. While she was under detention, her mother was suddenly taken ill and died a few days later; the protest organiser had to beg to be allowed out and was only permitted to see her mother accompanied by an escort in case she “escaped”.
In her “Statement regarding my Detention”, the protest organiser wrote: “I feel that my experience raises very serious issues about the powers that psychiatrists, social workers, and other authorities have in our society to repress others on the basis of their political beliefs. It is now clear that there are enough people out there who do have the courage to face issues even when they are controversial or call into question ideas we take for granted – that we live in a democracy, that public health authorities always act in our best interests, that governments are there to protect us, that psychiatrists in the west never diagnose and treat people on the basis of their political beliefs, that the science of medicine is never subordinated to politics or the profit needs of corporate giants. I believe that the recent events will only serve to focus people’s minds more than ever on these issues”. The protest organiser was fortunate to have been supported by informed doctors, scientists, journalists, a peer of the realm and a very sharp, hard-hitting team of solicitors. (For more information, see http://www.lyme-rage.info/elena/statejun06.html ).
The above episode seems to have overtones of how Russia used to silence dissidents by giving them a psychiatric diagnosis, a situation that seems not to have disappeared in current times.
In The Daily Telegraph on 13th August 2007, Adrian Blomfield’s article “Labelled mad for daring to criticise the Kremlin” told a harrowing tale of “punitive psychiatry” and referred to “state psychiatrists”: “The Daily Telegraph has learnt of dozens of incidents that suggest that Russia’s psychiatric system is rapidly becoming as unsavoury as it was in Soviet times”. Blomfield wrote:“ ‘Once again psychiatrists see stubbornness in an individual as a sign of psychosis’ said Lyubov Vinogradova, the executive director of the Independent Psychiatrists’ Association. ‘If a person goes to court against a state institution or writes letters of complaint he is treated as a social danger and is in danger of incarceration’. With a presidential election due next March, ‘Everything is ready for a wide scale political abuse of psychiatry’ said Mrs Vinogradova”.
The same day, the following comments appeared on an ME internet group: “There is some parallel with the treatment of ME patients in the UK: (1) ME patients are given a psychiatric label. (2) As a result, they are regarded as irrational and their opinions are not taken seriously. (3) Effectively they are silenced, since no-one will afford them credibility. Not their GPs, not their MPs, not their employers, and sometimes not their friends. (4) By silencing patients, their opposition is neutered, and psychiatric dominance in ME continues unchallenged. (5) Liaison psychiatrists exult in their success, and bank their loot from the MRC and DWP” (see http://groups.yahoo.com/group/LocalME/ ).
As Greg Crowhurst noted in his paper Be a trouble maker: “ ‘You can’t go after a health care system (that is) under the control of the insurance companies and pharmaceutical corporations. That system is immune’ warns Noam Chomsky in his latest book (Interventions; Hamish Hamilton, 2007), yet a radical corporate-led health care system is exactly what New Labour are bringing about in the UK, shadily and with little public consultation. Large companies are being invited to tender for the commissioning function of Primary Care Trusts (PCTs). Private companies will then have control over which treatments patients receive and who receives them. Clinical decision-making will increasingly come under the control of commercial managers and shareholders. That great bane of ME sufferers’ lives, the medical insurance industry – which since the mid 1980s has lobbied hard with great success to have ME reclassified as a psychiatric behavioural disturbance, in order to avoid massive pay outs – makes no secret of its intention to take over the UK health market. In 2001, UnumProvident launched New Beginnings, a public-private partnership which has been hugely influential in shaping policy, especially in relation to the DWP’s Pathways to Work programme. Illness, according to (Unum’s) distorted logic, is a dysfunction of the person; the problem of illness is located in the individual’s beliefs and behaviour. New Labour’s Welfare Reform Act was passed in May 2007. ‘Pathways to Work’, based on Unum’s behaviourist logic, is to be rolled out across the country by 2008. GPs and Primary Care staff will be offered rewards for getting people back to work. All of this is taking place against a wider picture of social control and state repression: as ‘the new rulers of the world’ (Pilger 2003), the corporations, aided and abetted by media and government, take over and implement health and social policies consistent with their own strategic and economic interests (Noam Chomsky, Failed States, Penguin 2003). These topics however ‘scarcely enter into public discussion and the basic facts are little known’. What can be done? It means a day- to- day dedication to the task. It means incredible courage and determination and above all a complete refusal to compromise on the truth that ME is a physical disease” (this article was posted on Co-Cure ACT, 14th August 2007; see also http://www.onetree93.freeserve.co.uk/resorces.html ).
The bed-rock of misinformation about ME/CFS in the UK lies firmly in the hands of Wessely School psychiatrists. For twenty years they have flooded the medical literature with their own theories dressed up as fact and seem to have ensnared ill-informed and uncritical editors who in turn seem to have paid little heed to the disturbing evidence of bias that has been shown to pervade the peer-review process.
Wessely School members have also financially supported the promulgation of their own views – for example, the meeting at which the Oxford criteria for “CFS” were conceived was financially supported by psychiatrist Peter White and it will be recalled that Peter White is paid by the medical insurance industry, which happens to hold the same interests.
However, the role of State authorities should not be underestimated. Examples of their complicity are provided below.
1. The Centre for Reviews and Dissemination
The Centre for Reviews and Dissemination (CRD) is based at York. It was set up in 1994 to provide the NHS with information on the effectiveness of treatments and the optimum organisation of health care. It works to support NICE, which in turn is funded by and responsible to the Department of Health. The CRD is a sibling of the Cochrane Collaboration, a body set up under the UK directorship of (then) Dr Iain Chalmers (a long-term member of HealthWatch, see above) to compile a meta-analysis of clinical trials. Simon Wessely offered himself to and was accepted by the Cochrane Collaboration to be responsible for entries on “CFS/ME”.
The CRD collaborates with health information organisations around the world and is a member of the International Network of Agencies for Health Technology Assessment (INAHTA). The CRD plays an important part in disseminating the contents of Cochrane Reviews to the NHS.
Recently, the Cochrane Collaboration was exposed as being corrupted by money and vested interests (Evidence-Based Medicine and the Cochrane Collaboration on Trial; David Cundiff, MD. Medscape General Medicine: 2007:9: (2):56).
The CRD’s various review teams trawl through the literature and then produce “Systematic Reviews” which claim to be grounded on “evidence-based” medicine. The team members are not medically qualified and so they have advisers to assist them. In the case of ME/CFS, those advisers included psychiatrist Simon Wessely (whose own database formed the basis of the CRD’s work on “CFS/ME”) and Professor Anthony Pinching.
The work of the CRD on “CFS/ME” was cogently exposed as flawed in a major Review in January 2006 by Hooper and Reid. The CRD team’s deficiencies include apparent “misinterpretation” of the data; discrepancy in their data; the inadequacy of the chosen evidence-base; failure to address their remit; concealment of adverse clinical events (which may constitute research misconduct); anomalies between the first version and the up-dated version of their Review and the skewing and even deletion of information in order to cast cognitive behavioural therapy (including graded exercise therapy) in a good light.
The suppression of published findings in a Systematic Review is a particularly serious matter. The lead author was persuaded to change her mind between her 2001 article in the Journal of the American Medical Association (JAMA) and her 2005 up-dated Systematic Review for NICE: the same author has remarkably different approaches to the same data in the two documents concerning the recommended psychiatric management regime favoured by NICE (ie. cognitive behavioural therapy and graded exercise). In 2001, she found methodological inadequacy; study withdrawals with high drop-out rates; unacceptability to patients of the regime in question; the exclusion of severely affected patients from all studies; the reported improvements of the management regime may be illusory, with little lasting benefit, and an acknowledgement that the data had been corrupted. These findings were published in one of the world’s most prestigious medical journals (JAMA), yet in her Systematic Review for NICE, the same author disowns her own previous findings on exactly the same data; she excludes the many reports of adverse events and signally fails to address the safety and effectiveness of the recommended interventions (a remit with which she was specifically charged).
The Hooper and Reid Review (Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base) can be found at
http://www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html
2. The NHS Information Authority (now the NHS Information Centre)
One of the routes of dissemination of information within the NHS used to be via the NHS Information Authority (NHSIA). Contrary to the WHO classification of ME as a neurological disorder, the NHS Information Authority listed chronic fatigue syndrome / myalgic encephalomyelitis as a mental disorder in its Mental Health Minimum Dataset Version 2.0 July 2001 on its website.
The NHSIA was responsible for providing correct information throughout the entire NHS, which is the third largest employer in the world.
From 6th April 2003, for over a year written representations were repeatedly made to the NHSIA by Mrs Connie Nelson from Glasgow, the mother of a son with ME/CFS and a committed campaigner on behalf of the ME/CFS community, asking for the erroneous entry on ME/CFS to be removed from the Mental Health Minimum Dataset.
The paper-trail of these communications is demoralising but typical, with correspondence being passed from a “Helpdesk” to the Data Quality and Training Department, to the Coding and Classification Helpdesk, to the Department of Health, back to an “IFPH” Helpdesk, to a Data Quality and Classification Advisor, to the Dataset Development team, to a Data Quality and Classification Programme Manager. None of these agents addressed Mrs Nelson’s complaint that ME/CFS had been incorrectly classified as a mental disorder by the NHSIA.
Upon receiving confirmation from the NHSIA that “the source of the coding of Chronic Fatigue Syndrome in the Mental Health Minimum Dataset (MHMDS) Data Manual is the WHO Guidance on Mental Health for Primary Care (and) the MHMDS Data Manual will continue to maintain consistency with the provision of the WHO guidance”, Mrs Nelson provided written evidence to the NHS Information Authority confirming that the disorder is not classified as a mental disorder, whereupon she received the following reply from the NHSIA: “The nature and specification of the data items, which make up the Mental Health Minimum Dataset (MHMDS), are matters for the Department of Health. The Department’s view is that it is appropriate for the MHMDS to continue to maintain consistency with the provisions of the WHO guidance”
At that point, Mrs Nelson accepted that as an individual she was unlikely to make progress on this issue, so she enlisted the help of Tony Wright MP, then Chair of the All Party Parliamentary Group on ME, who contacted the NHSIA on her behalf.
On 12th September 2003 Steven Harrison, Head of Corporate Affairs and Governance at the NHS Information Authority, replied to Tony Wright MP about Mrs Nelson’s complaint that ME/CFS was incorrectly coded by the Information Authority: “This causes an anomaly with the ICD-10. It is this anomaly that the Authority has been trying to clarify with the Institute of Psychiatry, London. Originally, the Institute was going to republish its adaptation of the WHO Guide to Mental Health in Primary Care in May of this year (ie. 2003) but delayed it because of our querying of this classification in question”.
On 10th December 2003 the NHS Information Authority sent another letter to Tony Wright MP in the following terms: “The issue associated with Chronic Fatigue Syndrome was that the Mental Health Minimum Dataset: Data Manual Version 2.0, July 2001, produced by the NHS Information Authority, has referenced the WHO Guide to Mental Health in Primary Care which, with permission of the WHO, has been adapted by the UK and produced by the Institute of Psychiatry, London, from the Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10, chapter 5, Primary Care Version, and in this UK adaptation Chronic Fatigue Syndrome has been assigned the code of F48.0 under the chapter for mental disorders. The point made by your correspondent was that this classification of F48.0 for Chronic Fatigue Syndrome was wrong. Within the UK adaptation, the code for Chronic Fatigue Syndrome has been allocated a code within the mental health and behavioural disorders chapter, which conflicts with the main WHO ICD-10 (mandated for use in the acute sector). I hope that the situation now arrived at, whereby the Code G93.3 will be available for Chronic Fatigue Syndrome in the UK adaptation by the Institute of Psychiatry will prove to be an acceptable situation”.
Upon receipt of this information, Mrs Nelson wrote to Steven Harrison, Head of Corporate Affairs and Governance at the NHS Information Authority, pointing out that merely making the correct code for ME/CFS “available” in the IoP’s revised edition of the Guide to Mental Health in Primary Care failed to address her original complaint, namely the misclassification of “CFS/ME” in the Information Authority’s Mental Health Data Manual.
It was not until 19th February 2004 that a formal complaint was submitted to the NHS Information Authority by Dr Charles Shepherd on behalf of the ME Association.
For over a year, the issues of the misclassification of ME/CFS by the NHS Information Authority remained unaddressed.
It was not until 18th March 2004 that Steven Harrison of the NHS Information Authority sent a letter in the following terms: “I have now been able to investigate your complaint fully. The NHS Information Authority will place a note on our website drawing users’ attention to the changes within this Guide introduced in February. The website will be updated with the current information by 24th March 2004”.
The Guide to Mental Health in Primary Care
The NHSIA’s confirmation that it had taken a decision not to alter the Data Manual on the grounds that the source of the information was the WHO “Guide to Mental Health in Primary Care” and that the Mental Health Minimum Dataset had to retain consistency with that guidance requires clarification.
The “Guide to Mental Health in Primary Care” was produced in 2000 by the WHO Collaborating Centre for Mental Health at the Institute of Psychiatry; it used Wessely’s own material on “CFS/ME” and included ME as a mental (behavioural) disorder. The Guide was funded by the Department of Health.
Despite strenuous complaints and despite the WHO ICD-10 classification being mandatory in the UK, sales of the Guide were allowed to continue unabated until almost 30,000 copies had been sold, thereby allowing misinformation to continue to be widely circulated via the Royal Society of Medicine Press.
Eventually an erratum was promised; despite misclassification being the vehicle for entry into this Guide to Mental Health, the erratum slip made no clear statement that ME/CFS is not classified as a mental disorder but merely informed readers of the correct classification code within the WHO International Classification of Diseases. This would mean nothing to many readers. The title of the second edition was changed to “Guide to Mental and Neurological Health” but did not clarify which disorder is mental or neurological in nature, so the fact that ME/CFS remains within a Guide to Mental Health will continue to mislead.
The Department of Health claimed – erroneously – that this was a World Health Organisation problem and declined to intervene.
Confusion arose because the WHO Collaborating Centre at the Institute of Psychiatry was legitimately able to use the WHO logo on the Guide, so people were misled into believing it was an authorised WHO Guide when such was not the case: it was not the WHO itself but the WHO Collaborating Centre at the IoP which had reclassified ME as a mental disorder, based on Wessely’s own beliefs. In September 2001 the WHO headquarters in Geneva issued a statement repudiating the unofficial reclassification of ME/CFS by the UK Collaborating Centre.
The ME community had been informed by Matt Smart, Executive Assistant to the Dean of Psychiatry at the IoP that “The second edition of the Guide (to Mental Health) due for publication in December 2003, has been in preparation for the past 12 months. CFS has been retained. The entry is a consensus section including both the ICD-10 mental health entry (neurasthenia) and the ICD-10 neurology entry (ME)”.
This demonstrated that when they were compelled to accept the WHO ruling that the correct classification for ME/CFS was in the neurological section of ICD-10, Wessely School psychiatrists simply maintained that the WHO ICD-10 itself had classified the same disorder (ME/CFS) in two different places, once in the Neurological Section (G93.3) and again in the Mental (Behavioural) Section (F48.0).
Once again, the claims made by the Wessely School were repudiated by the WHO: on 23rd January 2004 the WHO confirmed: “According to the taxonomic principles governing ICD-10, it is not permitted for the same condition to be classified to more than one rubric”.
The matter was raised in Parliament on 22nd January 2004, where Earl Howe noted the suggestion that Professor Wessely had “effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness” (Hansard [Lords] 23rd January 2004:Vol 656: No 7:1192).
It seemed that nothing would halt the Wessely School juggernaut’s determination to eradicate ME and to classify CFS as a mental disorder, which left the ME/CFS community with a serious problem in that ME/CFS remained incorrectly listed as a mental disorder throughout the NHS Information Authority.
The Mental Health Minimum Dataset “is a nationally defined framework of data on adult mental health patients. All providers of specialist mental health services for adults are mandated to collect the MHMDS”. This seems to mean that all NHS staff have no option but to regard ME/CFS as a mental disorder.
Things became even more complicated in that on 1st April 2005, the NHS Information Authority ceased operation. Some of its work was being continued by the NHS Connecting for Health and some by the Health and Social Care Information Centre (telephone number 0845-300-6016).
On 13th August 2007 a request was lodged with the Information Centre to see if the NHS Information Authority had kept its promise and removed ME/CFS from the Mental Health Minimum Dataset. Previously the public could check for themselves but -- despite New Labour’s lip-service to transparency in government – this facility has been removed and access is now only available to NHS staff by using a password. The inquirer was subjected to a barrage of questions which seemed an extraordinary response to a simple request for information: what is your full name (ie. not just the first fore-name); what organisation do you work for; why are you asking for this information; what do you want this information for; what is the particular reason for wanting this information; what journal are you writing for, and more. It seemed ironic that the logo of the channel through which the enquiry had to be made (the Information Centre for Health and Social Care) carries the words “Knowledge for Care”.
The answer was received on 17th August 2007: “CFS/ME” is still on the Mental Health Minimum Dataset and has definitely not been removed. There are no plans to remove it. This confirmation came from the Higher Information Analyst on the Mental Health team at the Information Centre for Health and Social Care, who was specifically asked if there were any plans to remove it. The inquirer was informed that this informatio