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Introduction………………………………………………………………………………….. 2
Problem: Terminology …………………………………………………………………….. 4
Problem: Continued refusal to heed the biomedical evidence that disproves the
biopsychosocial model of ME/CFS………………………………………………………… 5
Problem: Choice of Guideline Development Group members………………………….. 12
Problem: Secret Advisers to the Guideline Development Group……………………….. 14
Problem: The NICE Questionnaire……………………………………………………….. 14
Problem: Respondent Statistics……………………………………………………….. ….. 15
Problem: The Key Questions upon which the Draft Guideline is based……………….. 15
Problem: The narrow aim (and remit) of the York Systematic Review team…….……. 15
Problem: The ignoring of patients’ own evidence……………………………………….. 16
Problem: The refusal to listen to patients perpetuates and even sanctions the
culture of contempt surrounding ME/CFS patients……………………………….. …… 18
Problem: Apparent misinterpretation of the “evidence” by the York Review team…… 27
Problem: Anomalies in the updated Review by Chambers & Bagnall in the JRSM……. 37
Problem: The myth of the biopsychosocial model…………………………………………. 38
Problem: Flawed process…………………………………………………………………… 40
Problem: More misinformation that supports the NICE Draft Guideline………………. 41
Comments on specific statements in the Draft Guideline…………………………………. 44
Comments from other ME/CFS charities on the NICE Draft Guideline………………… 50
Technical anomalies that seem to invalidate the Draft Guideline………………………… 51
Conclusion……………………………………………………………………………………. 53
Prepared for a Registered Stakeholder:
The 25% ME Group for the Severely Affected
4, Douglas Court
Beach Road
Troon
Ayrshire, KA10 66Q
The NICE web page gives instructions for respondents to the Draft Guideline on “CFS/ME” that are misleading: it states that the Institute is unable to accept comments that are not on the correct (online) proforma. When contacted about this, NICE confirmed that the Institute favours online responses because they make things easier for NICE, but confirmed that nominated respondents without a computer are permitted to send in responses. However, NICE then stated that individual responses that are not sent in via a registered stakeholder will not be considered. This again contradicts the web page, which states: “Individuals and organisations not registered as stakeholders are able to comment”. Further, the web page states that the Institute is unable to accept more than one response per stakeholder and it is unclear whether or not the responsibility for collating the comments of all their nominated respondents into one single response is deemed to be the responsibility of each stakeholder. This means that from the outset of the consultation period, there are restrictions and unacceptable confusion that the sick people who are the subject of the Draft Guideline are likely to find insurmountable. Following discussions, NICE has since confirmed that submissions from stakeholders’ nominated respondents will be accepted in whatever format the stakeholders receive them, but it is requested that non-online submissions be typed and be submitted as soon as possible (ie. well before the end of the consultation period). It is understood that the NICE web page is to be amended to reflect this clarification.
In many respects the NICE Draft Guideline on “CFS/ME” of September 2006 is a remarkable document. There are, however, technical anomalies that require correction in the final version – for example, the acronym “QALY” is not explained in the Glossary of Terms (QALY stands for Quality Adjusted Life Years and is the product of life expectancy and a measure of the quality of the remaining life years).
For identification of other significant technical anomalies in the Draft Guideline, see below.
The Draft Guideline is certainly an impressive tool for managing the biopsychosocial model of chronic fatigue. The major problem is that it fails to distinguish between authentic ME and various other states of chronic fatigue which bear little resemblance to ME. Perhaps expediently, it includes compelling evidence from sufferers who have authentic ME so it can legitimately claim to target such patients within its remit.
However, in terms of understanding the nature of ME and in terms of implementing its favoured regime of cognitive behavioural therapy/graded exercise therapy (CBT/GET) upon those with ME, the Draft Guideline comprehensively fails those with ME, as did two of its predecessors, the Report of the “independent” Working Group for the Chief Medical Officer in January 2002 and the Medical Research Council’s CFS/ME Research Advisory Group Report “CFS/ME Research Strategy” in May 2003.
To be added to the reports that fail the ME/CFS community is the new Guideline (now a published Policy Document) from NHS Plus for the Department of Health that will have a devastating impact upon those with ME/CFS who are of working age (“Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline” DH Publication 2006/273539). This National Guideline is clearly timed to support the NICE Draft Guideline on “CFS/ME” and has the same misapprehensions, perhaps because its own Guideline Development Group included Professor Trudie Chalder and its External Assessors were psychiatrists Professors Michael Sharpe and Peter White, all of whom believe that “CFS/ME” is a behavioural disorder.
Peter White is well-known for his belief that medicine is currently travelling up a “blind alley” by following the biomedical approach and he believes that the biopsychosocial approach is the way forwards. Whereas the biomedical model accepts that ill-health is directly caused by diseases and their pathological processes, White and other members of the “Wessely School” (see below) prefer the psychosocial approach which incorporates thoughts, feelings and behaviour --- they believe it is what they deem to be “aberrant” beliefs that result in and perpetuate ill-health (see www.meactionuk.org.uk/PROOF_POSITIVE.htm ).
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 Barts 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. White and Clare state that “CFS” has two classifications (ie. in the International Classification of Diseases): one as neurasthenia in the psychiatric section and the other as myalgic encephalomyelitis in the neurological section; perpetuating factors are said to include inactivity, avoidant behaviour and maladaptive illness beliefs (statements that are insupportable).
Clare himself is known for his disparaging comments about those with ME/CFS: when he chaired the meeting that was convened to formulate the Oxford criteria, there was, he said, only one reason for calling the meeting and that was “a group of patients with a cluster of symptoms who get a lot of publicity”: (BMJ:1990:300:832).
Under “Conflicts of interest”, the NHS Plus Guideline states: “none declared”, yet the two external assessors (Sharpe and White) are long-time medical advisers to the insurance industry and White does consultancy work for the Department for Work and Pensions, so failure to declare such obvious conflicts of interest would seem to be a serious matter.
Also of concern is that the searches upon which so much reliance is placed are limited to those that will deliver the desired outcome: “Due to time and resource limitations, the “grey literature” on CFS (do they mean the biomedical literature?) was not comprehensively searched. The two external assessors are experts in the field of CFS and they indicated that they were content that all relevant research had been identified in the review”.
Unsurprisingly, this National Guideline states: “in the past 20 years, the medical profession has increasingly come to recognise that the symptoms of individuals with CFS are not readily explained by recognisable organic disease”. It concludes that the two treatments for which there is the greatest weight of evidence are CBT and GET and its “Key priority for implementation” states: “Ill health retirement should be deferred until CBT/GET has been explored”.
The timing of the appearance of these two documents seems to indicate a co-ordinated tactical strategy by the psychiatric lobby to achieve its aim of widespread implementation of psychotherapy for patients with “CFS/ME” via national guidelines.
As for the NICE Draft CFS/ME Guideline itself, it has to be said that it is exactly what was predicted. How could it be otherwise, given that the Government has already invested £8.5 million on new Centres expressly to deliver the same management regime and when previous publications from NICE have widely promoted CBT/GET as the management regime of choice for “CFS/ME”? (see “Effective Health Care” bulletin produced by the Centre for Reviews and Dissemination at the University of York (May 2002: volume 7 (4): “Interventions for the Management of CFS/ME”, published by the Royal Society of Medicine).
As has been noted many times previously, the nub of the problem is that the term “CFS” means different things to different people.
The term “ME/CFS” denotes the neurological disorder ME and acknowledges that in the World Health Organisation’s International Classification of Diseases (ICD-10), an alternative term for ME is “Chronic Fatigue Syndrome”. It is this latter term that has been foisted on the international research community since 1988 and thus the extensive biomedical research literature uses the term “CFS”.
Confusion arises because the UK psychiatric lobby (known colloquially as the “Wessely School” after its notorious prime mover Professor Simon Wessely) uses the same term “CFS” to mean neurasthenia, or chronic “fatigue” ie. a mental (behavioural) disorder.
This matter of terminology is very much a live one. Jill McLaughlin draws timely attention to the on-going battle by the psychiatric lobby to legitimise “hysteria” (Co-Cure ACT:RES: 9th October 2006) and notes that on 26th September 2006 the New York Times carried a feature by Erika Kinetz on hysteria and its newer names that include ‘neurasthenia’, ‘non-organic’ and ‘medically unexplained symptoms’: “ ‘Hysteria has always been a perjorative term, because of its association with women’ said Dr William E Narrow, associate director of the research division of the American Psychiatric Association. Patients with medically unexplained symptoms account for up to 40% of all primary care consultations (but) to avoid the wrath of patients, clinicians use these blander terms. ‘Hysterical patients take a bad rap in the medical profession’ said Deborah N Black, an assistant professor of neurology at the University of Vermont. ‘We don’t like them’ Dr Black said. ‘Somewhere deep down inside, we really think they’re faking it. The other reason we don’t like them is they don’t get better’ ”.
Thus for ME/CFS to be regarded as synonymous with “neurasthenia” (ie. “hysteria”) by the Wessely School perpetuates the existing culture of contempt for these patients (see below).
The Wessely School adherents seem to suffer from tunnel vision in relation to “fatigue”, apparently believing that fatigue is fatigue, whatever its provenance, and that it should be managed by a wall-to-wall behavioural modification approach. They seem impervious to the fact that fatigue is a feature of over 30 different disorders with widely differing pathology and treatment, any of which may present with “fatigue”.
On page 38, line 23, the Draft Guideline states that CBT is a psychological therapy and at line 27 states that it “is used in many health settings including cancer”. Whilst it is not disputed that psychological support can be helpful (and even essential) in any illness for those upon whom the demands imposed by events exceed their ability to cope, that is very different from stipulating that psychotherapy should be the first- line management regime, which is what is happening with ME/CFS. For the record, several cancer charities, including Cancer Research UK, have confirmed that CBT/GET is not routinely used as part of cancer patients’ rehabilitation programmes. Equally, the MS charities have confirmed that it is not used as a first-line management approach.
Since there is no specific psychiatric service providing compulsory corrective behaviour regimes upon fatigued cancer sufferers in order to compel them to change their “illness beliefs” that they are sick, or upon those with lupus, or on those with multiple sclerosis or other neurological disorders, how can it be justified to impose such a regime on those with ME/CFS? The answer is because Wessely School psychiatrists advise Government bodies that ME does not exist except in the minds of those who think they suffer from it, and that CFS is a behavioural disorder.
The NICE Draft Guideline asserts that the term “CFS” was adopted by the Royal College of General Practitioners in 1996 (when it appeared in the much criticised and psychiatrically biased Joint Royal Colleges’ Report CR54) but the rest of the world adopted the term in 1988. However, “ME” was recognised by the WHO as a distinct neurological disorder in 1969 and was officially recognised in the UK by the Royal Society of Medicine in 1978; in 1987 it was recognised by the Department of Health, who accepted it as an organic disorder in November that year and have repeated this acceptance numerous times thereafter. (For official evidence, see http://www.meactionuk.org.uk/Reality_Check.htm).
However, the NICE Draft Guideline uses the term “CFS/ME”, which is diagnostically meaningless. It was coined by Simon Wessely purely to placate patients: “In this article we discuss how illness beliefs arise and suggest principles for dealing with patients. It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering. One challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome. It may seem that adopting the lay label (ME) reinforces the perceived disability. A compromise strategy is ‘constructive labelling’: it would mean treating chronic fatigue syndrome as a legitimate illness while gradually expanding understanding of the condition to incorporate the psychological and social dimensions. The recent adoption by the UK Medical Research Council and the chief medical officer’s report of the term CFS/ME reflects such a compromise ” (ref: “Managing patients with inexplicable health problems”. B Fischoff S Wessely BMJ 2003:326:595-597).
What disorder is the Draft Guideline therefore talking about?
Problem: Continued refusal to heed the biomedical evidence that disproves the biopsychosocial model of ME/CFS
No matter how much biomedical evidence about ME/CFS is submitted to UK official bodies, it is ignored, even when sent by Recorded Delivery. For illustrations of what has been submitted to various official bodies over the years, see the www.meactionuk.org.uk website.
The only feasible conclusion is that no biomedical evidence, however relevant to ME/CFS patients’ well-being, will be allowed to displace the pre-determined agenda of imposing CBT/GET on patients diagnosed with “CFS/ME”, nor will biomedical evidence be allowed to displace the determination of the influential psychiatric lobby to re-classify ME as a behavioural disorder by subsuming it within the heterogeneous term “CFS/ME”, the intention being to drop the term “ME” as soon as expediently possible, thereby achieving Wessely’s long-held goal of “eradicating” ME (see page 20 below).
There can be no acceptable rationale for this continued ignoring by Government bodies of the evidence that ME/CFS is a multi-system, multi-organ disorder at endothelial level ie. that it is an inflammatory-mediated response causing endothelial swelling and arterial stiffness with hard evidence of raised isoprostanes not seen in any other known disorder.
Although the precise cause is yet to be determined, the symptoms of ME/CFS are not, as stated in the Draft Guideline (page 135, line 1), “medically unexplained”: as noted in our article “ME Exists: True or False?”, 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 (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 anomalies are proscribed.
For example, the Draft Guideline specifically recommends (5.2.8, page 107) that serology testing for viral or bacterial infections (including other chronic and latent infections) should not be carried out, yet Professor Maes et al (see above) recommend that all patients with ME/CFS should be checked by means of the IgA panel, which is another test that is not approved in the Draft Guideline.
Equally, in cases of suspected ME/CFS, informed clinicians believe that patients should be tested for borreliosis, one of most important differential diagnoses, yet this, too is proscribed, despite the fact that a leading UK microbiologist recognises that some people who are thought to have ME/CFS may actually have borreliosis. As BADA (Borreliosis & Associated Diseases Awareness: www.bada-uk.org) points out, it is recognised by the scientific establishment that Borrelia is able to evade immune surveillance. Lyme Disease (LD) may be misdiagnosed as multiple sclerosis, ME/CFS or other autoimmune disorders.
The symptom list for ME/CFS and for borreliosis has considerable overlap, for example: fatigue, myalgia, migratory joint pain, neuropathy (including numbness, tingling, burning and itching, hypersensitivity), tremor, muscle twitching, vision problems such as double vision, photophobia, hyperacusis, balance problems and vertigo, severe startle factor, short-term memory loss, sleep disturbance, cardiac arrhythmia, tachycardia, nausea / vomiting, adrenal dysfunction and immune system disturbances.
To reiterate: the longer the tests that reveal serious (but sometimes treatable) organic pathology continue to be disallowed, the longer the psychiatric paradigm will prevail and patients will continue to be neglected and abused by some members of the medical profession.
For illustrations of the psychiatric lobby’s denial of ME/CFS as an organic disorder, see The Mental Health Movement: Persecution of Patients? by Professor M. Hooper et al, which looks in detail at the tactics used by psychiatrists of the Wessely School to deny the evidence and to claim “CFS/ME” as a behavioural disorder ( www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm ).
Illustrations of biomedical anomalies
To redress the psychiatric bias and apparent ignorance that pervades the NICE Draft Guideline, a few quotations from the literature are provided about ME/CFS:
1956
(A New Clinical Entity? Editorial: Lancet 26 May 1956)
1989
“Many of the immunological and physical features of ME/CFS cannot be explained by mental illness”
(Stephen E Straus of the National Institutes for Allergy and Infectious Diseases, USA, Progress toward an answer to Chronic Fatigue: reported in CFIDS Chronicle, Spring 1989, pp77-78)
1989
“The abnormalities we found provide evidence for central nervous system and neuromuscular involvement”
(Carolyn L Warner: Neurology, March 1989:39:3: Suppl 1: 420; Presentation at the American Academy of Neurology Conference, Chicago, April 1989
1989
(J Cuozzo: Chronic Fatigue: JAMA 1989:261:5:697)
1989
“The crucial differentiation between ME and other forms of postviral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states”
(Dr Melvin Ramsay, President, UK ME Association. ME Association Newsletter, Winter 1989: 20-21)
1991
(Nancy Klimas, Professor of Medicine, University of Miami School of Medicine; Director of Immunology; Director of AIDS research and Director of the Allergy Clinic at Miami. Presentation: Immunological Markers in (ME)CFS. The CFIDS Association Research Conference, November 1990, Charlotte, North Carolina. Reported in CFIDS Chronicle, Spring 1991; pp 47-50)
1991
“Once one is familiar with the concept of post-viral fatigue syndrome (ME/CFS), such patients are in practice not too difficult to differentiate from those with true psychiatric illnesses. The physical symptoms should be an aid to diagnosis, although they may be wrongly attributed to primary psychological illness unless care is taken in eliciting them”
(Professor Rachel Jenkins: Assessment and Diagnosis of ME in the Psychiatric Clinic.
In: Postviral Fatigue Syndrome; British Medical Bulletin 1991:47:4:241-246)
1992
Patients with ME/CFS “may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system”
(Buchwald D, Cheney P, Peterson D et al: A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpes type 6 infection. Ann Int Med 1992:116:103-116)
1992
“CFIDS has an organic basis; it is not a psychiatric illness. Our Surveillance Study does not support the notion that (ME)CFS is a psychiatric illness, and in fact, suggests that it has an organic basis”
(Dr Walter Gunn, Principal Investigator of (ME)CFS studies at CDC: CFIDS Chronicle, February 1992, page 1)
1993
“The worst cases have both an MS-like and an AIDS-like clinical appearance. The most difficult thing to treat is the severe pain. Most have abnormal neurological examination. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self” (Testimony by Dr Paul Cheney before US FDA Scientific Advisory Committee)
1993
“The performance of the CFIDS patients was sevenfold times worse than either the control or the depressed group. These results indicated the memory deficit in CFIDS patients was more severe than assumed by CDC criteria. A pattern emerged …supporting neurological compromise in CFIDS”
(Curt Sandman, Professor of Psychiatry and Human Behaviour, University of California School of Medicine: Memory deficits associated with chronic fatigue immune dysfunction syndrome: Biol Psych 1993:33:618-623)
1994
“The spectrum of illnesses associated with a dysregulated immune system must now include (ME)CFS”
(Paul H Levine, Research Professor of Epidemiology and Biostatistics, George Washington University, Washington DC: Summary and Perspective: Epidemiology of (ME) Chronic Fatigue Syndrome: Clin Inf Dis 1994:18: (Suppl 1):S57-S60)
1994
“Abnormalities of immune function, hypothalamic and pituitary function, neurotransmitter regulation and cerebral perfusion have been found in patients with (ME/CFS). Recent research has yielded remarkable data. The symptoms of (ME)CFS have long been viewed as a neurologic pattern, as confirmed by other names such as myalgic encephalomyelitis. A link is being forged between the symptoms pattern of (ME)CFS and objective evidence of central nervous system dysfunction. The view that (ME)CFS is a primary emotional illness has been undermined by recent research”
(Dr David S Bell: Instructor in Paediatrics, Harvard Medical School: Chronic fatigue syndrome update: Findings now point to CNS involvement: Postgraduate Medicine 1994:98:6:73-81)
1995
“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages”
(Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)
1995
“I take great issue with the current recommendations that no additional testing should ever be done. I believe there are indications for more advanced testing”
(Dr Daniel Peterson: JCFS 1995: 1:3-4:123-125). Peterson is a Diplomate of the American Board of Internal Medicine and it was he who first identified CFIDS during an outbreak in Incline Village, Nevada, in 1984. At the Second World Congress on ME/CFS and related disorders, held in Brussels in September 1999, Peterson said he was amazed at the misconceptions that existed about ME/CFS; he said that ten years ago, he believed ME/CFS would be resolved by science; he had now changed his mind and believed it could only be resolved by politics)
1997
“The signal abnormalities in ME/CFS patients most closely resemble those seen in AIDS encephalopathy. Patients often experience rejection by family, friends and physicians. The illness is hardly ‘imaginary’ ”
(Anthony Komaroff, Assistant Professor of Medicine, Harvard Medical School: Clinical Crossroads: Conference Report: JAMA 1997:278:14:1179-1185)
1999
“The most important thing is not to have (patients) do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA”
(Paul Cheney, Professor of Medicine, Capital University, USA: Presentation in Orlando, Florida, February 1999 at the International Congress of Bioenergetic Medicine). (At the 7th AACFS International Research and Clinical Conference in Wisconsin in October 2004, magnetic resonance spectroscopy evidence was presented showing mitochrondrial dysfunction similar to mitochondrial encephalomyopathy)
2000
“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”
(Anthony Komaroff: Assistant Professor of Medicine, Harvard Medical School: Editorial: Am J Med 2000:108:2:169-171)
2001
“In ME, there are chronic sequelae and the effects may be neurological, hormonal, autoimmune and myalgic, which may affect the myocardium”
(Dr John Richardson: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Other Organ Pathologies. The Haworth Press Inc, New York, 2001)
2001
“There is considerable evidence already that the immune system is in a state of chronic activation in many patients with (ME)CFS”
(Anthony Komaroff, Assistant Professor of Medicine, Harvard Medical School: American Medical Association Statement, Co-Cure, 17 July 2001)
2001
“New Survey reveals Chronic Fatigue Syndrome (ME) is as disabling or debilitating as lupus, multiple sclerosis and rheumatoid arthritis. Many medical professionals are acknowledging it as a seriously disabling condition. Three quarters of medical professionals responding to the survey believe that (ME)CFS, also known as CFIDS, is as or more disabling than other chronic diseases”
(Press Release, CFIDS Association of America, 15th November 2001)
2005
“Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society”
(Professor Nancy Klimas, University of Miami, AACFS In-coming Presidential Address: Co-Cure, 21st March 2005: http://www.co-cure.org ).
Patients with ME/CFS can indeed be “terribly ill” and “misunderstood” and without doubt do “suffer at the hands of a poorly informed medical establishment”, so on what rational basis can the NICE Draft Guideline recommend that the first line (and indeed only) management approach to such a clearly devastating disorder as ME/CFS should be one that utilises behavioural modification techniques in an attempt to convince patients that they do not have a legitimate physical disorder?
It seems that where ME is concerned, most of those chosen to be advisers to official bodies are those with the same ideology as the psychiatric lobby, who are then assured of their pre-determined outcome. Why, for instance, would the following be appointed as members of the NICE GDG?
Dr William Hamilton has a published track record of believing that CFS/ME is a behavioural disorder. In 2001 he co-authored a paper with Dr Alison Round, a community health physician who was one of the five members of the CMO’s Working Group to walk out because they were not getting enough of their own way in that their insistence that “CFS/ME” be designated a behavioural disorder met significant resistance (the others who walked out being psychiatrists Professor Peter White, Dr Anthony Cleare, Professor Elena Garralda and former mental nurse Trudie Chalder, now Professor of Cognitive Behavioural Psychotherapy).
Hamilton et al concluded that CFS patients consulted their GP more frequently in the 15 years before the development of their condition (how such a conclusion relates to those with ME/CFS under the age of 15 years is not addressed) and Hamilton therefore concluded that behavioural factors have a role in the aetiology of CFS (ref: Frequency of attendance in general practice and symptoms before development of chronic fatigue syndrome: a case-control study. WT Hamilton, GH Hall, AP Round. British Journal of General Practice 2001:51 (468):553-558). His conclusions were attacked by Professor JC Murdoch in the BJGP, to which Hamilton took exception, asserting: “No abnormality has been demonstrated with CFS. Extensive searches for immunological, infectious or endocrine explanations have drawn a blank”, an astonishing assertion that is readily disproved by a survey of the scientific and medical literature. More troubling is Hamilton’s interpretation of his own study and his demand that CFS researchers and clinicians examine their beliefs against his findings and see how well they match (Co-Cure RES. NOT: 21st December 2001).
Also notable is that Hamilton has spent 15 years working for the medical insurance industry and is currently Chief Medical Officer for a major medical insurance company, The Exeter Friendly Society; it was Hamilton who drew up their exclusion clause for CFS/ME, which states: “No benefit shall be payable for investigation or treatment of chronic fatigue syndrome / myalgic encephalomyelitis or allied conditions. The allied conditions are excluded because CFS/ME has several other labels including PVFS, neurasthenia and fibromyalgia”. Other medical insurance companies have adopted the same exclusion as that drawn up by Hamilton.
It is disturbing that Hamilton appears to be unaware that ME is classified in the ICD-10 as a neurological disorder at G93.3, that neurasthenia is classified as a mental disorder at F48.0 and that fibromyalgia is classified as a soft tissue disorder at M79. They cannot be the same condition because the World Health Organisation has confirmed in writing that it is not permitted for the same condition to be classified to more than one rubric.
Why is someone with Hamilton’s known views deemed suitable to be on the GDG that is formulating the NICE national policy for patients with ME/CFS?
Lumping different disorders together and claiming -- in defiance of the evidence -- they are but one single (somatoform) disorder is simply a re-run of Simon Wessely’s 1999 paper in which he and Mike Sharpe claimed that conditions such as CFS/ME are nothing more than “artefacts of medical specialisation” and should “not be dignified by their own formal case definition and body of research” but should be managed as a psychiatric disorder (Functional somatic syndromes: one or many? S Wessely C Nimnuan M Sharpe. Lancet 1999:354:936-939).
As Geenen et al noted in 2001: “The apparent overlap between fibromyalgia, chronic fatigue and irritable bowel is not sufficient cause to consider all these syndromes as manifestations of a single syndrome. The objective should be to try to find pharmacological or non-pharmacological treatment of choice for specific subgroups of patients” (see Fibromyalgia: diagnosis, pathogenesis and treatment. Geenen R, Jacobs JW. Curr Opin Anaesthesiol 2001:14 (5):533-539).
No evidence-base and no rationale exists for such lumping together of separate syndromes; to do so is both morally and scientifically unacceptable because it perpetuates diagnostic confusion to the detriment of the various patient groups. If Hamilton does not know or accept this, his input to the GDG is seriously flawed.
Dr Fred Nye is another member of the NICE Guideline Development Group. He is a consultant physician and “Clinical Champion” of the Liverpool “CFS” Clinical Network Co-ordinating Centre, whose advertisement for therapists informed applicants that “CFS” patients have perpetuating illness behaviour; that they experience barriers to understanding; that there can be significant barriers to accepting the changes needed in behaviour, which have to be overcome in therapy in order to facilitate a successful outcome; that the Fatigue Therapist will be required to modify patients’ predisposing personality style and provide motivation to patients with CFS; that some clients may be resistant to working in a psychological framework and that there may be verbal aggression (Chronic Fatigue Treatment Service: Ref: 2570. Closing date: 31st January 2005).
Dr Hazel O’Dowd: In the Draft Guideline Acknowledgements (page 6), Dr Hazel O’Dowd gets a special mention for her work on the behaviour section of the Draft Guideline. She is a psychologist who is a CFS “Clinical Champion” at Frenchay Hospital Bristol: like Hamilton, she is a believer in behavioural modification regimes for those with ME (to which she refers as myalgic encephalopathy, a non-classified disorder).
She states about herself: “I was previously in adult mental health. CBT is a tool to help change and deal more effectively with problems their particular diagnosis gives them. CBT works best for people who can identify aspects of themselves or their coping style which they want to change. Changing the way you think and feel about yourself and your illness can bring about massive improvement in mood, sleep, levels of fatigue, and work. We plan to offer this type of approach in the home for the more severely disabled. However, if people don’t like the approach, they won’t do the therapy. Under those circumstances, CBT cannot be expected to produce results. Graded activity is part of the rehabilitation package we offer, combined with CBT. We do this because the research consensus is that this is the most powerful intervention currently available” (ME Essential, October 2004, page 21).
However, her recent publication may cause Ms O’Dowd to reconsider her beliefs about the effectiveness of CBT.
She has just published a paper in which the objective was to test the hypothesis that group CBT will produce an effective and cost-effective management strategy for patients in primary care with CFS/ME; it was a double-blind, randomised controlled trial that used the Chalder fatigue scale as one of its outcome measures.
The study findings were unequivocal: “Group CBT did not achieve the expected change in the primary outcome measure as a significant number did not achieve scores within the normal range post-intervention. The treatment did not return a significant number of subjects to within normal range on this domain (and) it did not bring about improvements in cognitive function or quality of life” (Cognitive behavioural therapy in chronic fatigue syndrome; a randomised controlled trial of an outpatient group programme. O’Dowd H et al. Health Technol Assess 2006:10(37):1-140).
The NICE Draft Guideline asks at page 154, line 20: “Is Group CBT cost-effective relative to individual CBT?”. Will Ms O’Dowd draw her negative findings to the attention of the NICE Guideline Development Group?
Problem: Secret Advisers to the Guideline Development Group
Even though the ME Association has submitted a written request for the names of these advisers, there seems to be a curious reluctance to name them and the advisers themselves seem suddenly shy. However, Carole Forbes, Systematic Review Project Manager at the Centre for Reviews and Dissemination (a co-author of the current Chambers / Bagnall et al JRSM paper) was contacted about this some months ago and she confirmed that the NICE Guideline is being formulated through NICE’s own Guideline Development Group and that the Advisory Panel to the GDG is the same as the one used for the York Systematic Review in 2001 and that it includes psychiatrists Simon Wessely, Mike Sharpe and Peter White.
Problem: The NICE Questionnaire
The Questionnaire was sent out on 6th February 2006 and had to be returned by 5th May 2006. NICE promised that “The GDG will use the results to help them make decisions about the recommendations that NICE will publish for public consultation (and) the results will help to inform the GDG’s decision-making”.
However, the Draft Guideline itself acknowledges (on page 52, line 14) that there were problems, quoting one respondent: “How I, or anyone else with ME or even recovered could possibly read, digest and understand the NICE document enough to be able to answer the Questionnaire is beyond my comprehension”.
It is known that some people were simply unable to complete the Questionnaire and did not return it because the process was made too complicated and impossible for sick people to cope with, for example, how could those severely affected by ME/CFS even hold a copy of the 488 page Systematic Review update of October 2005 by Bagnall et al from the Centre for Reviews and Dissemination at York that was required to be read before answering the Questionnaire (which when sent electronically could not be downloaded because it was too large a document, causing computers to stall, so hard copies had to be sent out even to those who had requested an online version).
The nature of the Questionnaire sent to stakeholders indicates that the major decisions had already been taken by the GDG without reference to the stakeholders. Only disputed matters, where the GDG were “uncertain”, have been sent for stakeholder input, which means that 80% of matters have been decided without consultation, with only a token 20% being referred.
Importantly, the Questionnaire contained a serious “misprint” relating to questions 29 – 61, making a nonsense of responses to those questions. Since there were 90 questions in total, this means that answers to over one third of questions (33 out of 90) were likely to be erroneous.
Perhaps expediently, the following section (starting with question 62 and relating to “Behavioural Approaches”) changed -- without guidance or instruction -- from choosing ‘inappropriate’ in the previous section to choosing ‘appropriate’ in that section. How many people with cognitive impairment would have spotted this semantic hurdle?
On 3rd May 2006 Nancy Turnbull, Chief Executive and Project Lead, National Collaborating Centre for Primary Care which sent out the Questionnaires on behalf of NICE (based at the Royal College of General Practitioners) acknowledged in writing that there was a problem: respondents were given just two days in which to consider, check, amend and return their Questionnaire, which for sick people was virtually impossible in such a short time scale (and which by that time had been returned anyway).
Problem: Respondent Statistics
The Draft Guideline gives a suggested population prevalence of “CFS/ME” in the UK of at least 0.2% – 0.4%. The rate in 2002 Report for the Chief Medical Officer was 240,000 (ie 0.4% of the UK population) and the Draft Guideline adopts this figure (page 38, line 10).
The Draft Guideline lists 143 registered stakeholders, each of whom could nominate 5 to 50 people with knowledge or experience of “CFS/ME” to take part in the Questionnaire. If 143 stakeholders nominated 50 respondents, there would have been 7,150 potential respondents; if stakeholders nominated the minimum 5 respondents, the number of potential respondents would have been 715.
However, only 399 Questionnaires were sent out. Of these, 219 were completed, out of which only 119 were returned by patients themselves (the remainder being returned by carers or healthcare professionals), so out of a presumed patient population of 240,000, this is just 0.05%. This tiny response will be even easier for NICE to ignore, which seems to have been the intention from the beginning.
How is such a response representative of the UK ME community, also bearing in mind the fact that the incorrect wording in the Questionnaire may have resulted in erroneous responses to over one third of the questions?
Problem: The Key Questions upon which the Guideline is based
NICE claims that “The Guideline is based on the best available evidence from the research literature”. In relation to ME/CFS, this seems to be a misleading statement. Instead of focusing on the needs of the ME community and on the research literature that supports a biomedical model of the disorder, the GDG have created their own “key questions” to fit the NICE scope (the scope being the document that sets out what the Guideline will cover). These seem to preclude anything other than a biopsychosocial model; indeed, the Draft Guideline states: “The key questions set the basis for subsequent evidence reviews and facilitated the development of the recommendations by the GDG” (page 41, line 25). This seems to support the notion that the key questions were designed specifically to achieve a pre-determined agenda, especially as the York Review team (whose advisers include Simon Wessely) was instrumental in the formulation of those five questions (page 41, line 28).
For example, out of the five key questions, Question 1 is: “what are the existing case definitions for chronic fatigue syndrome in adults and children?”. The Draft Guideline states (page 36, line 11) that the Oxford criteria are “frequently used definitions”, which is misleading, since the Oxford criteria have never been adopted internationally, being used only in the UK by Wessely School adherents. The Oxford criteria have been shown to have no predictive validity and have been rejected by world experts in ME/CFS.
Question 3 is: “does the evidence show that any particular intervention is effective in treatment, management or rehabilitation of adults and children with a diagnosis of CFS/ME?”. Since only the psychiatric lobby has been able to obtain serious funding, it follows that the literature is replete with their psychiatric studies which purport to show that the intervention of CBT/GET is effective, so on a numerical evaluation of published studies, the answer to this question is inevitable and simply feeds the self-perpetuating psychiatric paradigm.
Problem: The narrow aim (and remit) of the York Systematic Review team
According to Anthony Komaroff, Professor of Medicine at Harvard and acknowledged world expert in the disorder, there are in excess of 2,000 research studies showing biological abnormalities in ME/CFS.
The York Review team seems to have ignored every single one and overstates the belief of the Wessely School that “CFS/ME” is amenable to behavioural modification.
It was in 1998 that Wessely wrote: “Citation of the literature is influenced by (the) review authors’ discipline” (Joyce, J, Wessely S et al: JAMA 1998:28 (3):264-266). This acknowledgement of bias seems to have been overlooked in the present literature searches upon which the Draft Guideline relies.
The Draft Guideline states (page 43, line 3): “The aim of the literature search was to identify the most relevant published evidence in relation to the key clinical questions in order to produce an evidence review”. This seems to be yet another example of the self-perpetuating psychiatric paradigm that, by virtue of the acknowledged lack of studies other than psychiatric that address management, inevitably assures that the literature search will produce only studies that support a psychiatric intervention.
On 26th January 2006, Sarita Tamber of the NHS Communications Executive at NICE wrote to a respondent: “With regard to the CFS/ME Guideline, because of the lack of evidence, it was decided to use formal consensus methods within the GDG”, adding: “NICE Guidelines are based on research evidence (and) the systematic review (the Evidence Review) was carried out by the University of York and updates the earlier review which informed the CMO’s report”. Given the composition of the GDG (see above), the known views of the GDG advisers and the limitations of a literature search that was bound to include only psychiatric studies, the outcome was inevitable.
Problem: The ignoring of patients’ own evidence
“Evidence-based medicine” (EBM) is often quoted as the gold standard by which all interventions are to be judged. Contrary to sound-bytes emanating from the psychiatric lobby, EBM does not consist solely of random controlled trials (RCTs) but must include all three sources of evidence (1) RCTs (2) patient experience and (3) clinician experience. In the case of ME/CFS where -- due to prevailing policy -- there is a paucity of good quality evidence about non-psychiatric interventions such as dietary modification and other forms of complementary medicine, it is irrational to rely on just five RCTs that appear to support GET as the intervention of choice (page 147, line 11) whilst ignoring the other two components, especially given that the RCT study participants may not have had authentic ME in the first place and that the RCTs excluded those with severe ME/CFS.
Moreover, the sample sizes in the five RCTs ranged from just 49 to a maximum of only 148 (page 147, line 12). How relevant the health status of these few patients is to the large number of severely affected ME/CFS patients in the UK is impossible to say. It is worth recalling that Wessely himself has dismissed other researchers’ biomedical studies on the grounds that there were too few participants to be meaningful, yet the NICE Draft Guideline is promoting a national policy on what is by any standards a small and unrepresentative sample.
All Guideline Development Groups are governed by a Code of Practice stipulating that patient groups must be consulted if implementation is to succeed. There is every indication that this particular GDG will pay mere lip-service to the “consultation” process and that its mind is already made up even though the consultation period has only just started: in his summary of a NICE meeting held on Thursday 5th October 2006, the Medical Adviser to the UK ME Association (Dr Charles Shepherd) was under no illusion: “Unfortunately I was left with the impression that the (Draft) Guideline would not be the subject of major changes at this late stage in the development process (and) I doubt if we are going to see a Guideline that the ME Association can endorse – certainly on the basis of the responses that were given on Thursday” (at which Professor Peter White was in attendance: Co-Cure ACT: 8th October 2006).
Whilst not unexpected, this is a matter of deep concern, as the proposed CBT/GET regimes have been consistently rejected by patients because they are either ineffective or actively harmful. It is a matter of record that a substantial number of mild-to-moderately affected patients became – and have remained -- severely affected following exercise regimes.
Insistence on implementation of management regimes that patients have found both useless and harmful is contrary to the principles set out in the Department of Health booklet “The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century” (2001) but the NICE Draft Guideline ignores this, stating (page 181) that CBT/GET “should be offered to ALL adults and children with CFS/ME”. It neglects to mention that for those who refuse this “offer” – because they may be too sick -- State and medical insurance benefits are likely to be withdrawn.
Patients may indeed know best about how to manage their own condition. Often, rest is best, despite the endless admonitions of the psychiatric lobby that rest is not to be tolerated.
Ciara MacLaverty, a University graduate who became a severely affected ME patient, has written in compelling terms of her own experience:
“It’s been 20 years since I was first diagnosed with ME and I have never had a full day’s health since then. I want to express my concerns over the widely-touted dictate that ‘total and/or prolonged rest’ is counter-productive in ME. When I was in the acute phase I was bed-bound for three years and was in pain and excruciating malaise every waking moment. The pain in my head was searing and nothing would lessen the pain. I couldn’t read, watch TV or listen to the radio. I had to wear earplugs as household noises caused surges of acid-like pain in my head. I could barely speak. If I was propped up in bed, I nearly passed out. I sometimes vomited. I often couldn’t hold a knife and fork. I longed for a bath and was mortified that my hair was unwashed for so long. When I finally started to heal it was NOT because I started ‘gentle exercise’. The pain in my head began to lessen by small degrees. I believe this slow healing within the brain happened because I gave my body the best chance. When I hear the ‘no total rest’ prescription I get exasperated as there are so many cases where this is wholly inappropriate. I recently took part in Dr Chaudhuri’s research project, undergoing a magnetic resonance spectroscopy (MRS). The brain scan (was) indicative of ongoing inflammation. I knew that the sense of brain inflammation I had in the first three years of ME was utterly crippling on a scale that is extremely difficult to convey. I just wasn’t believed. Doctors who want to prescribe ‘no total rest’ to patients in my position should start by listening to the patient. How ill must a person be when they have to shut down all meaningful interaction with life, forgo all of life’s pleasures and lie, barely moving in the dark for several years? Does that sound like a rest? Or any kind of a choice? The inability to get out of bed is not a consequence of the disease. It is the disease”.
Patients like Ciara MacLaverty who have no option but to follow their own instincts are berated and derided by the psychiatric lobby and dismissed by clinicians who have been unduly influenced by it. This compounds their despair.
If the aim is to help patients and to move toward a better understanding of best-practice and cost-effective policy, instead of the NICE Draft Guideline inflating the paucity of existing (unrepresentative) evidence to a stature that is insupportable in order to conclude that CBT/GET should be implemented throughout the UK “CFS/ME” community, it would surely be better to give more weight to the patients’ surveys which find that CBT is unhelpful and that GET is harmful. The Draft Guideline itself acknowledges this (page 56, line 3: “graded exercise was felt to be the treatment that made more people worse than any other”).
In considering patients’ experience of CBT and GET, a patients’ survey carried out by The 25% ME Group for the Severely Affected that was submitted to NICE is not mentioned in the Draft Guideline (Severe ME Analysis Report, March 2004). This is an important omission because in that survey, 93% found CBT unhelpful; 95% found GET unhelpful and of those who tried GET, 82% reported that they were worse afterwards.
As in the tragic case of Ciara MacLaverty, even to think of imposing CBT and GET on house-bound severely affected patients makes such patients objects of derision and shows a disturbing lack of understanding of their situation. Those who are bed-bound are nowhere near “activity management” level (page 138, line 1). Many of those with severe ME/CFS may have between 10% - 20% functional ability, and Professor Mike Sharpe himself concedes that at least 80% functional ability is needed in order to engage in activity management. The proposed 90 minute sessions (a considerable percentage of which will be via the telephone for those with severe ME/CFS) are not feasible. Many people with even moderate ME/CFS are not able to use the telephone for as much as 10 minutes at a time. How much therapeutic intervention can be delivered by telephone, especially for those who are isolated?
It is the case that ME/CFS patients, their carers, their clinicians and even their MPs have submitted evidence making plain their legitimate concerns about CBT/GET.
From what is contained in the Draft Guideline, it seems that all these submissions have been ignored, just as they were ignored by the CMO’s Working Group and by the MRC.
Problem: The refusal by NICE to listen to patients perpetrates and even sanctions the culture of contempt surrounding ME/CFS
That there is a culture of contempt about people with ME/CFS that is perpetrated by certain members of the medical profession cannot be disputed.
In 1990 Wessely wrote: “The description given at the Mayo Clinic remains accurate: ‘the average doctor will see they are neurotic and he will often be disgusted with them’ ”. (Chronic fatigue and myalgia syndromes. Wessely S. In: Psychological Disorders in General Medical Settings. Ed. N Sartorius et al. Hogrefe and Huber, 1990).
In 1994 Wessely stated: “Patients with inexplicable physical 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).
This was further exemplified by Professor Mike Sharpe in 1999: “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 in October 1999 by Michael Sharpe, hosted by the University of Strathclyde).
1990
Old wine in new bottles: neurasthenia and ME Simon Wessely.
Psychological Medicine 1990:20:35-53
“Suggestible patients with a tendency to somatize will continue to be found among sufferers from diseases with ill-defined symptomatology until doctors learn to deal with them more effectively”
1990
Possible ME S Wessely
The Practitioner 8th March 1990:234:195-198
“ME is a description, not a diagnosis”
1990
The chronic fatigue syndrome – myalgic encephalomyeltitis or postviral fatigue S Wessely PK Thomas
In: Recent Advances in Clinical Neurology. Pub: Churchill Livingstone 1990:pp85-132
“It is regrettable that (ME) has become a fad”
1990
In: Psychological Disorders in General Medical Settings Ed: N Sartorius et al Hogrefe & Huber, 1990
“Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. Do any of these symptoms possess diagnostic significance? The answer is basically negative”
1991
Postviral fatigue syndrome and psychiatry Anthony S David
British Medical Bulletin 1991:47:4:966-988
“A diagnosis of depressive illness would be appropriate. Unfortunately, this is not good enough for the patient”
“In summary, there is considerable direct and circumstantial support for chronic fatigue (note the title purports to refer to PVFS, or ME/CFS) being an aspect of psychiatric illness”
1991
Cognitive behaviour therapy in chronic fatigue syndrome Butler S, Chalder T, Ron M, Wessely S
JNNP 1991:54:153-158
“Continuing attribution of all symptoms to a persistent ‘virus’ preserves self-esteem”
1991
The psychological basis for the treatment of CFS Wessely S
Pulse of Medicine 14th December 1991:58
“The prognosis may depend on maladaptive coping strategies and the attitude of the medical profession”
1991
Psychiatric management of Post Viral Fatigue Syndrome M Sharpe
“To exclude (patients with a psychiatric diagnosis) is practically restrictive”
“Psychiatric management may be defined as the assessment and treatment of the mentally ill”
“Personality factors (attitudes, beliefs and thoughts) and behaviour have been shown to perpetuate disability. These unhelpful or “dysfunctional” cognitions include the beliefs that recovery from the illness is not under personal control or that the illness is poorly understood”
“In response to the lack of acceptance of the “reality” of the symptoms of CFS, support has been sought for the existence of a disease called myalgic encephalomyelitis or ‘ME’ ”
“The insistence that ‘ME’ is an exclusively physical disease with a poor prognosis may have been unhelpful for sufferers (and) such a restricted conception of the problem may have perpetuated illness in some individuals”
“The use of extensive laboratory investigation may be psychologically harmful to the patient by reinforcing their beliefs about serious physical disease”.
1992
The epidemiology of fatigue: more questions than answers Lewis G Wessely S
Journal of Epidemiology and Community Health 1992:46:92-97
“Studies usually find a high prevalence of psychiatric disorder among those with CFS, confirming that physicians are poor at detecting such disorders”
1992
Eradicating myalgic encephalomyelitis (ME) Simon Wessely
Report of the meeting held on 15th April 1992 at Belfast Castle / Pfizer Invicta Pharmaceuticals, pp4-5
“It seems that ME sufferers prefer to feel that they have a ‘real’ physical disease – it is better for their self-esteem (and) the label ‘ME’ helps legitimise their dealings with doctors”
1994
Predictors of chronic “postviral” fatigue Helen Cope, Anthony David et al
Lancet 1994:344:864-868
“Doctor behaviour, such as sick certification, emerged as a significant contributor to the risk of chronic fatigue” (note the title refers to postviral fatigue)
1994
The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study.
K. Fukuda S.Straus M Sharpe et al
Ann Int Med 1994:121:12:953-959
“In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended”
“Examples of specific tests (which should not be done) include serologic tests for enteroviruses; tests of immunologic function, and imaging studies, including magnetic resonance imaging scans and radionuclide scans (such as single photon emission computed tomography (SPECT) and positron emission tomography (PET) of the head. We consider a mental status examination to be the minimal acceptable level of assessment”
1994
Patients with medically unexplained symptoms Alcuin Wilkie Simon Wessely
British Journal of Hospital Medicine 1994:51:8:421-427
“Their symptoms have no anatomical or physiological basis”
1994
Microbes, Mental Illness, The Media and ME: The Construction of Disease Simon Wessely
9th Eliot Slater Memorial Lecture, 12th May 1994
“I will argue that ME is simply a belief, the belief that one has an illness called ME”
“The Royal Free Disease itself is part of the world of myth”
1995
British Journal of Psychiatry 1995:167:86-94
“Clinicians should avoid reinforcing unproven illness beliefs”
“We are critical of what we regard as the misuse of neuropsychological test results to confirm or refute an ‘organic’ basis for CFS”
1995
Psychiatry in the Allergy Clinic LM Howard S Wessely
Clinical and Experimental Allergy 1995:25:503-514
“Many doctors are frequently consulted by patients with persistent unexplained symptoms attributed to allergy or chemical sensitivity” (no evidence is provided to support this claim)
“When patients are told there is no evidence of any underlying immunological or allergic cause, they can be difficult to manage”
“The epidemiology of environmental illness is reminiscent of the difficulties encountered in distinguishing between the epidemiology of myalgic encephalomyelitis (ME), a belief, and chronic fatigue syndrome, an operationally-defined syndrome” (the World Health Organisation does not regard ME as “a belief” but as a formally-classified neurological disorder)
“Attribution of unexplained symptoms to a ‘virus’, as happens in most patients with the label of ME, may preserve self-esteem and protect against the stigma of psychiatric disorder”
“These syndromes are akin to culture-bound syndromes afflicting modern developed societies where sufferers from unexplained symptoms no longer see themselves as possessed by devils or spirits but instead by toxins and viruses”
“Further investigations will add nothing to the management but will reinforce the patient’s belief in organic pathology”
“Liaison between the physician and the psychiatrist is necessary so that patient acceptance of psychiatric referrals can be facilitated”.
1996
Chronic fatigue syndrome: an update Anthony J Cleare Simon C Wessely
Update 1996:14 August:61
“Chronic fatigue may be better understood by focusing on perpetuating factors and the way in which they interact in self-perpetuating vicious circles of fatigue, behaviour, beliefs and disability”
“The perpetuating factors include inactivity, illness beliefs and fear about symptoms, symptom focusing, and emotional state”
“CFS is dogged by unhelpful and inaccurate illness beliefs, reinforced by much ill-informed media coverage; they include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder”
“Increased symptom focusing occurs in CFS sufferers; (this) increased concern leads to selective attention and ‘body watching’: this can intensify the perceived frequency of symptoms, thereby confirming illness beliefs and reinforcing illness behaviour”.
1999
ME. What do we know (real physical illness or all in the mind?)
Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde
“In my lecture this evening, I would like to talk to you about myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome or CFS (which) for convenience I will refer to as CFS”
“CBT has been shown to have substantial benefits for patients with CFS (and) can reduce disability in most patients”