12th December 2005
Prepared for The Group on Scientific Research into Myalgic Encephalomyelitis (the Gibson Parliamentary Inquiry) that has been established “to assess the progress of scientific research on ME since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002, (and) to increase public understanding of scientific research into ME/CFS (and) to identify research and funding requirements in establishing the cause of ME/CFS”.
This document is a compilation of illustrations taken from the published evidence-base of the organic aetiology of ME/CFS over the fifty years from 1955 to 2005.
To facilitate comparison it also includes Appendices of illustrations from the published works of psychiatrists who believe ME/CFS to be a behavioural disorder.
Malcolm Hooper
Emeritus Professor of Medicinal Chemistry
Department of Life Sciences
University of Sunderland
SR2 7EE, UK
There is a large and significant published international evidence-base that ME/CFS is a legitimate medical disorder with numerous reproducible biomarkers of organic pathology, but this evidence has been consistently buried in the UK by “Wessely School” psychiatrists (so named after its leading activist Professor Simon Wessely) who have vested interests in promulgating their own hypothesis that ME is nothing but an “aberrant illness belief” that is best managed by compulsory “behavioural rehabilitation” regimes
Wessely School psychiatrists themselves admit that their favoured therapies have limited impact on the disorder and that any modest improvement disappears after several months
Despite this, the Medical Research Council (MRC) and the UK Government have directed substantial funding into these therapies but nil funding for biomedical research into ME/CFS
This is a human rights travesty
Patients with ME/CFS who are not mentally ill are forced to attend psychiatric clinics; a single attendance at a psychiatric unit constitutes a de facto psychiatric diagnosis in the eyes of many, including GPs, employers, insurance companies, and family members
No credible evidence exists that ME/CFS is a mental health issue, yet Wessely School psychiatrists continue to exercise a virtual monopoly on ME/CFS research in the UK
There is an urgent need to end the Wessely School stranglehold on ME/CFS research, as well as the promulgation of their retrograde belief that the scientific biomedical approach to disease is a (quote) “blind alley” that should be replaced by a “psychosocial” model of disease (in which thoughts, feelings, beliefs and behaviour in the social context are responsible for diseases), and also their potentially seriously damaging psychosocial “management” regimes that are imposed on those with ME/CFS on pain of withdrawal of State and medical insurance benefits
The Wessely School argument that syndromes like ME/CFS cause “unnecessary expenditure of medical resources” has been criticised by a leading US researcher for its pernicious public policy implications (see Lancet Correspondence, 11th December 1999:354, Number 9195)
Research funding for ME/CFS must be urgently directed towards scientific and medical disciplines other than psychiatry and the MRC must cease to reject high quality biomedical research proposals on ME/CFS (known to have been submitted)
Many GPs and most NHS Consultants (for example, cardiologists, neurologists, chest physicians, rheumatologists, immunologists) have virtually no accurate knowledge about ME/CFS and therefore underestimate both its seriousness and the multi-system dysfunction it causes, so patients are simply dismissed and abandoned without support
The malign influence of Wessely School dogma extends throughout Government Departments, throughout the NHS, and even extends to the Judiciary: one High Court litigant was told that “Judges regard ME as psychological self-indulgence”; one Local Health Board will only fund treatment for ME/CFS where the prime focus is cognitive behavioural therapy and/or graded exercise therapy; a spokesman for Grampian NHS Trust is on record in 2003 (ie. more than a year after the publication of the CMO’s Working Group report) as stating: “ME is not a condition we recognize or treat”
The damage perpetrated on those with ME/CFS by Wessely School adherents cannot be quantified
Illustrations from the international literature showing that the Wessely School hypothesis about the nature of ME/CFS is wrong begin on page 9 below
Appendices: (provided for direct comparison of the biomedical with the psychosocial models of the disorder)
Illustrations of actual quotations about patients with ME/CFS from psychiatrist Professor Simon Wessely (page 129)
Illustrations of actual quotations about patients with ME/CFS from psychiatrist Professor Michael Sharpe (page 146)
“Wessely’s Wisdom? Some more open questions for Professor Wessely” (page 162). This document asks Professor Wessely some cardinal questions about ME/CFS that he and other Wessely School adherents have consistently failed to address
“Unanswered Questions: do inconsistencies matter in medicine?” (page 171). This document looks at the irrationality of drawing conclusions across differing patient populations; at the absurdity of relying on assumptions as the basis for a compulsory management regime of behavioural modification for patients with ME/CFS; at the divergent assertions about the efficacy of cognitive behaviour therapy and at the inherent danger of applying a ‘one size fits all’ policy.
This document has been compiled to acquaint Members of Parliament with the existing international evidence base on the organic nature of myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS). It should be read in conjunction with our previous submission entitled “For UK Parliamentary Inquiry into ME/CFS: Chronological List of Documents Relevant to the Inquiry” (7th November 2005).
On 28th July 2005 there was a meeting between Dr Gibson MP, Professor Malcolm Hooper and members of the Norfolk ME community, at which Dr Gibson stressed his determination to hear evidence from both sides of the medical divide (ie. from those advocating a biomedical aetiology and from those advocating a purely psychosocial aetiology), and especially from affected patients. What Dr Gibson offered at that meeting was an open-minded, comprehensive and transparent examination and evaluation of all the evidence, including and especially the failure of the insurance industry to meet legitimate claims by those with ME/CFS, the problems of those with ME/CFS in obtaining State benefits, and the lack of all support for those with ME/CFS.
We and others, including senior NHS Consultants, are concerned that Members of the Parliamentary Inquiry should understand the travesty that currently exists in the UK in relation to ME/CFS. A group of psychiatrists known to patients and researchers alike as the “Wessely School” strenuously promotes their own hypothesis that ME/CFS is a mental health disorder that is best managed by a regime of cognitive behavioural therapy (CBT) which incorporates compulsory graded exercise therapy (GET) as a form of “rehabilitation”. CBT is described in the Chief Medical Officer’s Working Group 2002 Report on CFS/ME as “a tool for constructively modifying attitudes and behaviour”.
Emanating from the Wessely School, a spurious medical consensus has emerged, namely that the syndrome is a primary psychiatric (behavioural) disorder. There is no evidence whatever that ME/CFS is a psychiatric disorder, and even adherents of the Wessely School themselves admit that CBT/GET has limited impact on the illness.
Objective evidence that such interventions are effective in ME/CFS is lacking: in 2001 a Leading Article found there was no such evidence and questioned whether the reported improvement might actually be an illusion (JAMA 2001:286:11:1360-1368).
Professor Simon Wessely himself has conceded that his therapies are “not remotely curative” and are only “modestly effective” and that “these interventions are not the answer to ME/CFS” (Trials and Tribulations: JAMA 2001:286:11).
Professor Wessely is also on record as stating: “cognitive behaviour therapy has been shown to improve functional impairment and fatigue for up to eight months after treatment. Observed gains may be transient” (Am J Psychiatry 2001:158:2038-2042).
It was as long ago as 1997 that Simon Wessely made public his own knowledge about the questionable safety of such therapies: “People involved in psychotherapy should know that it has side effects and risks. There is evidence that some intensive courses do have rates of casualties” (Guardian, 11th March 1997, page 16). This must surely raise legitimate doubts about the assertions of Wessely School psychiatrists that the regime they promote so assiduously for those with ME/CFS is “safe” and “acceptable to patients” when there is no such evidence (because evidence of the efficacy of CBT/GET in those with authentic ME does not exist).
Despite these contra-indications, the Medical Research Council (MRC) and the UK Government have directed millions of pounds sterling into these psychotherapy strategies, which are the only Government-funded provision for patients with ME/CFS. This imbalance in funding has had negative consequences for those afflicted by ME/CFS.
The evidence set out below needs to be borne in mind when considering the unproven dogma about ME/CFS that currently dominates UK Government policy, namely that “CFS/ME” is a mental health issue.
It is important to understand that the expedient term “CFS/ME” is a heterogeneous label that specifically and intentionally includes psychiatric disorders in which “fatigue” is a dominant feature and which therefore cannot be synonymous with ME/CFS, also known as Post Viral Fatigue Syndrome / PVFS, and sometimes known in the US as Chronic Fatigue and Immune Dysfunction Syndrome or CFIDS.
The view that “CFS/ME” is a mental health issue also prevails at the Medical Research Council -- see the 32 page Report of January 2005 from the MRC Neurosciences and Mental Health Board’s Strategy and Portfolio Overview Group, which clearly states: “Mental health research in this instance covers CFS/ME” (NMHB Mental Health Scoping Study Report). Given that ME/CFS is internationally classified by the World Health Organisation as a neurological disorder, the MRC was questioned about its own “classification” and in a written response dated 6th December 2005 Dr Robin Buckle stated: “This classification for the Mental Health Scoping Study was pragmatic, and related to the grants associated with the activities of one section of the office, allowing for an analysis of research trends”.
It is unacceptable that Wessely School psychiatrists continue to exert a virtual monopoly on ME/CFS research in the UK when the international evidence clearly does not support their hypothesis about the nature of it.
The Wessely School view of ME/CFS is not accepted by most of Wessely’s medical peers in the USA, nor is it shared by all psychiatrists in the UK.
However, to the detriment of UK patients, the Wessely School hypothesis is now misguidedly believed to be scientific fact by many UK doctors, as well as by the medical insurance industry with which these psychiatrists are closely involved as medical advisers, and by the commercial company that holds the contract to carry out assessments for State benefits (formerly a French company called SEMA, then from 2002 a Franco-German conglomerate called Schlumberger SEMA and currently a massive multi-national company with headquarters in Paris called Atos Origin whose UK head office is at 4, Triton Square, Regents Place, London NW1 3HG).
We draw attention to the fact that five years ago, there was an Inquiry by the House of Commons Social Security Select Committee that resulted in a major 245 page Report (“Medical Services”; HC 183, 12th April 2000): it was condemnatory about the way the SEMA Group mishandled Social Security claims and it took evidence from at least eight sources about specific difficulties experienced by those with ME/CFS. There was a long debate in the House of Commons on the Government’s response. Nothing, however, has changed since the publication of that Report: if anything, the situation has worsened considerably for many patients with ME/CFS.
We wish to place on record our concern that the Gibson Inquiry does not allow itself to be misdirected or misled into believing that post-2002 “progress” in research in ME/CFS in the UK has been significant simply by virtue of the setting up of 50 Government-funded “CFS Centres”, because these Centres offer only the same psychotherapy regimes that are promoted by the Wessely School; indeed, the situation has deteriorated so dramatically that, for example, the South & East Dorset NHS Primary Care Trust actively includes ‘somatisation’ in its GP referral protocol for “CFS/ME” patients (somatisation is the manifestation of emotional distress through constantly changing physical symptoms).
Not only are CBT and GET regimes potentially harmful for those with ME/CFS (unknown numbers of whom may be in a form of heart failure), but they continue to ignore the existing and established evidence-base of scientific knowledge that demonstrates the organic nature of the disorder, which cannot be in sufferers’ best interests, since the evidence is abundant that even moderate physical exercise is likely to induce relapse.
Should the Gibson Inquiry allow itself to be misdirected or misled, it will be seen as yet another manipulated betrayal of the ME/CFS community, particularly as the terms of reference currently make no mention of the need for effective support for both patients and their carers.
We wish to make it plain that we fully endorse the need to move forwards, but we maintain that the only way to do this is to build upon, not ignore, the existing knowledge base of biomedical research evidence.
We completely support Dr Gibson’s view as set out in his Press Release of 1st December 2005: three years on from the CMO’s Working Group Report, “the time is right to evaluate how much further we have come in understanding the causes of ME, establishing a programme of research on all aspects of the condition and securing adequate investment for this research”.
This present document is lengthy because it provides some indication of how extensive is the existing biomedical evidence-base that has been so effectively buried by those who insist that the disorder is perpetuated by the “aberrant behaviour” of both ME sufferers themselves and those medical professionals who support them in their conviction that ME is a physical, not a mental health issue.
It has been compiled because (i) we accept it is unrealistic to expect Members of Parliament on the Inquiry to visit and review the existing knowledge-base for themselves, and (ii) because we maintain that without this knowledge, their deliberations will inevitably be based on fallacious assumptions.
According to Anthony Komaroff, Professor of Medicine at Harvard and a renowned world expert on ME/CFS, there are more than 2,000 papers which demonstrate that ME/CFS is an organic, not psychiatric, disorder. The following examples are therefore merely illustrative but provide hard evidence of some of the published clinical observations as well as some of the international biomedical research findings on ME/CFS from 1955 to 2005.
Based on this evidence, it is submitted that in the light of the undisputed biomarkers of serious organic pathology, the psychiatric paradigm lacks both validity and scientific credibility, as do the numerous attempts by Wessely School adherents to re-classify ME from its current neurological classification in the World Health Organisation International Classification of Diseases to a mental (behavioural) classification.
Indeed in 1999, Leonard Jason, Professor of Psychology, DePaul University, Chicago, was outspoken, writing that it is regrettable that the disorder is portrayed in such a narrow way, and that flaws in the case definition of “CFS” have led to “inaccurate and biased characterization of ME/CFS which incorrectly favours a psychiatric view of the illness” because “the British case definition does not consider psychiatric disorders are exclusionary for (ME)CFS”.
Jason pointed out that “the erroneous inclusion of people with primary psychiatric conditions in ME/CFS samples will have detrimental consequences for the interpretation of treatment efficacy findings”.
He also stated that there has been an ignoring of “a large body of medical research demonstrating biological abnormalities in individuals with ME/CFS. For years, investigators have noted numerous biomedical abnormalities among ME/CFS patients, including over-activated immune systems, biochemical dysregulation in the 2-5A synthetase / RNASE L pathway, muscle abnormalities, cardiac dysfunction, abnormal EEG profiles, abnormalities in cerebral white matter, decreases in blood flow throughout the brain, and autonomic nervous system dysfunction. Unfortunately, some uninformed physicians continue to believe that (ME)CFS and other disorders like it are primarily psychiatric in nature. Some confuse (ME)CFS with neurasthenia. Biases such as these have been filtered through to the media, which portrays ME/CFS in an overly simplistic and stereotyped way (which) compromises patient-doctor relationships and medical care for patients” (see LISTSERV home page at LISTSERV.NODAK.EDU 18th March 1999).
We submit that the behaviour of the Wessely School in relation to ME/CFS may be considered to be perverse and may even amount to scientific misconduct because of its adverse impact on the health and well-being of sufferers.
This is because of the Wessely School’s relentless dismissal for almost two decades of the international biomedical evidence that ME/CFS is an organic (not psychiatric) disorder, particularly:
their repeated failure to distinguish between “chronic fatigue” and ME/CFS (even though the differences have been repeatedly brought to their attention and even though as long ago as 1990, the American Medical Association issued a specific notice emphasizing that chronic fatigue is not the same as chronic fatigue syndrome)
their demonstrable bias that has resulted in the deliberate suppression of the biomedical evidence on ME/CFS by UK medical journals
their selective manipulation of others’ published papers (by claiming other authors’ findings support their own view when such is not the case)
their unscrupulous determination to “eradicate” ME by asserting that it is nothing more than an “aberrant illness belief” and their tactics of denial (for referenced evidence and illustrations of such tactics of denial, see “The Mental Health Movement: Persecution of Patients” available online at http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm and “Consideration of Some Issues Relating to the Published Views of Psychiatrists of the ‘Wessely School’ in relation to their belief about the nature, cause and treatment of ME” at http://www.meactionuk.org.uk/consideration.htm )
their focusing on the single symptom of chronic “fatigue” in ME/CFS and ignoring of other significant symptoms and signs, especially cardiovascular, neurological and immunological
their deliberate dilution of the case description to include any “medically unexplained” fatigue, ie. their obfuscation of the case definition so that it specifically includes somatisation disorders (which instantly greatly increases the numbers of patients with an alleged diagnosis of “CFS/ME” who can be coerced into enrolling in the Wessely School management regime); if those with ME/CFS are physically unable to continue and have no option but to withdraw from these regimes, they immediately risk losing their State benefits and their medical insurance payments)
their advice to Government that no tests should be performed on those with ME/CFS to confirm the diagnosis (other than the most basic screening, which is universally known to be normal in ME/CFS)
their advice to Government that the reported biomedical abnormalities “should not deflect the clinician from the biopsychosocial approach and should not focus attention towards a search for an ‘organic’ cause” (ref: Joint Royal Colleges’ Report on CFS, CR54, 1996)
their influence and functioning in areas of medicine in which they have no expertise: as psychiatrists, it follows that areas of complex medical science such as immunology, vascular biology and muscle pathology which underpin ME/CFS are not within their remit of expertise. In July 2005 the General Medical Council criticised and struck off Professor Sir Roy Meadow from the Medical Register for acting outside his area of expertise. The Chairman of the Disciplinary Hearing told Meadow: “Your misguided belief in the truth of your argument is both disturbing and serious. You should not have strayed into areas that were not within your remit of expertise”. During the GMC hearing, Robert Seabrook QC stated that Meadow had ignored almost three decades of relevant research and that this was not simply a case of poor research or simple error: it was a calculated move that enabled him to impress his own theses on the public mind. Many in the ME community draw a parallel with Professor Wessely in relation to ME/CFS. (For a more detailed consideration, see http://www.meactionuk.org.uk/Another_Meadow.htm ).
As Professor Jason stated in his letter of 12th May 2005 to the Editor of Psychology Today, ME/CFS is a “devastating” chronic disorder and he questioned why it is assumed that it is only sufferers themselves who believe it to be an organic disorder when many scientists, including himself, support such a view.
He noted that much of the published data asserting a psychiatric aetiology derives from tertiary centres where instruments to assess psychiatric symptoms have often been inappropriately selected, so one cannot conclude that ME/CFS is a psychiatric illness.
Jason further noted that although there is a group of investigators who feel it is the “misbeliefs” that the patient support groups “inadvertently re-inforce” which account for the illness, many other researchers hold the view that there are neurologic, neuroendocrine, autonomic and immunologic explanations for ME/CFS.
Jason admonished those who improperly insist that psychiatric interventions be imposed on those with ME/CFS: “To suggest that efforts to help people cope with a chronic illness is the primary and only way to cure them does a disservice to all individuals with this condition” (see Co-Cure, 12th May 2005).
Professor Jason is a leading American psychologist who is author of one of the largest US epidemiological studies on ME/CFS, the recipient of numerous National Institutes of Health grants and the originator of a research portfolio that is widely considered to be scientifically superior in construct to that of Professor Simon Wessely.
As John Lalor noted on 4th December 2005 in the Irish Independent: “Psychiatrist and author Thomas Szasz claimed that the misuse of psychiatry was ‘linked to the political power intrinsic to the social role of the psychiatrist in totalitarian and democratic societies alike’. Szasz’ concept of power and psychiatry relates directly to the present state of health services as a whole”.
No-where is this more apposite than in relation to ME/CFS politics in the UK: it was at the Second World Congress on (ME)CFS held in Brussels in September 1999 that ME/CFS expert Professor Daniel Peterson from the US went on record saying that ten years ago (ie. in 1989) he believed that (ME)CFS would be resolved by science; he had since changed his mind and believed that it could only be resolved by politics.
The evidence below speaks for itself, from which the assertions of the Wessely School that ME/CFS is a behavioural disorder can readily be seen to be entirely without foundation, especially their assertions that it is perpetuated by “aberrant illness belief” and by “the misattribution of normal bodily sensations” and that patients “seek and obtain secondary gain by adopting the sick role”.
Indeed, the unsubstantiated and unproven beliefs of the Wessely School about the nature of ME/CFS have already been shown to be as erroneous as the equally dogmatic assertions of their psychiatrist predecessors who in the 1940s decreed that the intention tremor that characterizes Parkinsons Disease (PD, which used to be known as the shaking palsy) was caused by an inner conflict resulting from the wish to masturbate (Psychodynamcis in Parkinsonism. Booth G. Psychosomatic Medicine 1948:10:1-14). It was not until the discovery of the neurotransmitters, especially dopamine, in the late 1950s that psychosocial studies on PD were replaced by biomedical research studies.
Psychiatrists have a long track record in mis-attribution of medical disorders: the literature is replete with examples of psychiatrists having claimed – with certainty – “unexplained” symptoms as psychiatric disorder: many common conditions, including diabetes (which in the 1930s was said to represent “the last stand of neurosis” caused by sexual repression), epilepsy, multiple sclerosis, pernicious anaemia, myasthenia gravis, gastric ulcer, glaucoma, asthma and Dupuytren’s contracture have all been claimed as psychiatric disorders until medical research proved otherwise.
Such is the “certainty” of psychiatry, yet it is such “certainty”about ME/CFS that the present New Labour Government and its departments so enthusiastically espouse at incalculable cost to many severely sick people.
It is surely simplistic to think that UK government agencies can be so intellectually inferior to their international counterparts as to be unaware of the convincing science that supports an organic aetiology for ME/CFS, so why do these bodies continue to ignore this evidence?
The answer would seem to be a bizarre scandal of such magnitude that people who are unaffected by it regard it as risible and therefore dismiss it as fictional conspiracy.
1955
Outbreak at the Royal Free ED Acheson (who later became Sir Donald Acheson, UK Chief Medical Officer)
Lancet 1955:394-395
“All outbreaks have been remarkable for the relatively long active course of the disease and for marked muscular pain and spasm. Sensory symptoms and signs are additional features”.
1956
A new clinical entity? Editorial (although at the time this Editorial was anonymous, it was later conceded by Sir Donald Acheson that he had written it)
Lancet 1956 (May 26);789-790
“In spite of perplexing variations in the clinical picture from case to case it soon became clear that a new clinical entity had appeared”
“Relapses are frequent”
“Among the more characteristic features are the severe muscular pains, often accompanied by exquisite tenderness. Most commonly they affect the neck, back or limbs but there may also be Bornholm-like chest and abdominal pains”
“In nearly every patient there are symptoms or signs of disease of the central nervous system”
“Hepatitis and splenomegaly may also turn out to be part of the picture”
“The term ‘benign myalgic encephalomyelitis’ does describe some of the striking features by (1) symptoms and signs of damage to the brain and spinal cord; (2) protracted muscle pain with paresis and cramp; (3) emotional disturbances in convalescence; (4) normal cerebrospinal fluid; (5) involvement of the reticulo-endothelial system; (6) a protracted course with relapses in severe cases”
“We believe that its characteristics are now sufficiently clear to differentiate it from, need it be said, hysteria”.
1959
The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia ED Acheson
Am J Med 1959:26:569-595
“Pain in the muscles was an almost constant feature. In severe cases it was agonizing and unresponsive even to opiates”
“Definite parasthesia occurred. Diplopia (was noted)”
“It would be manifestly erroneous to consider as hysteria the emotional instability associated with this illness. The disorder is not a manifestation of hysteria”
“Other sensory disturbances consisted of loss of memory and difficulty in concentration”
“It is concluded that the disease is recognizable in its epidemic form on clinical and epidemiological grounds and therefore may properly be considered a clinical entity”.
1969
Letter to the Editor Joyce R Adamson
New England Journal of Medicine 1969:281:798
“This entity is in danger of becoming a ‘wastebasket’ diagnosis because of its variable signs and symptoms. Almost every conceivable neurologic sign has been described under the heading of epidemic neuromyasthenia”.
1970
Encephalomyelitis resembling benign myalgic encephalomyelitis SGB Innes
Lancet 1970: (May 9):969
“Motor weakness may not be confirmed on formal testing since it appears to take the form of an incapacity for sustained muscular effort”.
1977
Iceland Disease (benign myalgic encephalomyelitis or Royal Free disease) AM Ramsay, EG Dowsett et al BMJ 1977: (May 21):1350
“Physical findings may include hepatitis”
“Objective manifestations of the disease can still be present over thirty years after the initial illness”.
1978
Epidemic myalgic encephalomyelitis Editorial
BMJ 1978: (3 June):1436-1437
“The features common to every epidemic include headache, unusual muscular pains (which may be severe), lymphadenopathy and low grade fever. In a minority of cases frank neurological signs can be detected by careful clinical examination: there may be nystagmus, diplopia, myoclonus, bulbar weakness, motor weakness, increased or decreased tendon reflexes, disturbances of the sphincters and extensor plantar responses”
“Fasciculations, cranial nerve lesions and extrapyramidal signs have also been reported”
“One characteristic feature of the disease is exhaustion, any effort producing generalised fatigue. Often there (is) emotional instability and lack of concentration. The clinical outcome may take any of three courses: some patients recover completely, some follow a relapsing course and some are permanently incapacitated”
“At a symposium held recently at the Royal Society of Medicine to discuss the disease and plan research there was clear agreement that myalgic encephalomyelitis is a distinct nosological entity”
“Other terms that have been used to describe the disease were rejected as unsatisfactory for various reasons: the cardinal clinical features show that the disorder is an encephalomyelitis…indeed, the exhaustion and tiredness are similar to that described by patients with multiple sclerosis”
“From the patient’s point of view the designation ‘benign’ is misleading, since the illness may be devastating”
“Some authors have attempted to dismiss this disease as hysterical, but the evidence now makes such a tenet unacceptable. The organic basis is clear --- from the detection of an increased urinary output of creatine, the persistent findings of abnormal lymphocytes in the peripheral blood of some patients, the presence of lymphocytes and an increased protein concentration in the cerebrospinal fluid and the neurological findings. Immunological studies showed a high incidence of serum anticomplementary activity and the presence of ill-defined aggregates on electron microscopy of acute-phase sera”. (This Editorial was fully referenced).
1978
An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955
Nigel Dean Compston
Postgraduate Medical Journal 1978:54:722-724
“It became clear early on that there was organic involvement of the central nervous system. There was objective evidence of involvement (of the CNS)”
“The most characteristic symptom was the prolonged painful muscle spasms”
“Bladder dysfunction occurred in more than 25% of all the patients”
“Objective evidence of brain stem and spinal cord involvement was observed”
“McEvedy and Beard’s (psychiatric) conclusions ignore the objective findings”.
1979
Clinical and biochemical findings in ten patients with benign myalgic encephalomyelitis
AM Ramsay A Rundle
Postgraduate Medical Journal 1979:55:856-857
“Ten patients were investigated for blood levels of myoglobin and various enzymes. The biochemical pattern bears a close similarity to that found in Duchenne muscular dystrophy (DMD). These findings are discussed with particular reference to the recent suggestion that the permeability of cell membranes may be impaired by changes in intracellular energy mechanisms”
“The dominant clinical features could be classified as follows: (1) abnormal muscle fatigability (with severe pain, particularly in the legs and back) (2) circulatory impairment was a feature of all cases, suggestive of hypothalamic damage and (3) impairment of memory and inability to concentrate was common in all patients”
“The duration of illness in the ten cases was 35 years, 9 years, 6 years, 3 years, 2 years, 23 years, 17 years, 2 years, 5 years and 17 years respectively. A tendency to severe relapse was a feature of (four) cases”
“If the aetiological factor in benign myalgic encephalomyelitis impairs the permeability of the muscle cell membrane as a result of changes in the intracellular energy content, this could be followed by a differential loss of intracellular proteins”.
1981
Was it Benign Myalgic Encephalomyelitis? CS Goodwin
Lancet 1981:January 3: 37
“In 1969 it was suggested that ME should only be diagnosed if neurological and muscle signs were found. Parish has described the neurological signs and the symptoms of involvement of the autonomic nervous system”
“It is important that the title ‘myalgic encephalomyelitis’ should be restricted to patients who show some of each of the three major features of the disease: Firstly, symptoms and signs in relation to muscles, such as recurrent episodes of profound weakness and exhaustion, easy fatiguability, and marked muscle tenderness. Secondly, neurological symptoms or signs, especially affecting the eyes, or weakness of peripheral muscles, as demonstrated by the voluntary muscle test; or some loss of peripheral sensation; or involvement of the autonomic nervous system (orthostatic tachycardia, abnormal coldness of the extremities, episodes of sweating or pallor, [and] bladder disturbances). Thirdly, biochemical abnormalities, such as a raised urinary creatine, or an abnormal electrophoresis pattern with raised IgM”.
1983
Sporadic myalgic encephalomyelitis in a rural practice BD Keighley EJ Bell
JRCGP June 1983:339-341
“ME (is) a distressing and often prolonged illness. Many of the patients included in the study had been dismissed by hospital clinicians with the implication that there was no organic basis for their problems. As the study progressed, a pattern to the complexity of the symptoms developed (which included) malaise, exhaustion on physical or mental effort, chest pain, palpitations, tachycardia, polyarthralgia, muscle pains, back pain, true vertigo, dizziness, tinnitus, nausea, diarrhoea, abdominal cramps, epigastric pain, headaches, paraesthesiae and dysuria”
“The group described here are patients who have had miserable illnesses. There is a large number of ill and unhappy patients in the community”.
1984
Myalgic encephalomyelitis and the general pracitioner JC Murdoch
New Zealand Family Physician 1984:11:127-128
“Recent reports have shown an association with infection with the Coxsackie (sic) and two authoritative editorials have pointed to an entirely physical basis for the disorder”
“Most sufferers had monumental problems with work, family and personal life and with their doctors. They should be warned to expect a long illness charaterised by relapses. They should be certified as unfit for work”
“In the long-term sufferer, patients are often anxious to identify food and chemical allergies”.
1984
New Zealand Medical Journal 1984: 14th November:782
“It has been my consistent observation that activity requiring physical exercise or mental concetration exacerbates the condition”
“Many ME patients also experience food and chemical intolerances, and are often therefore unusually sensitive to the side effects of drugs”.
1984
ibid
“An attempt to recover normal fitness and activity levels can exacerbate the condition and bring about a relapse”.
1985
ANZMES, 10th October 1985
“The following features are commonly represented: atopy, history of food reactions and allergies”
“ME can be indistinguishable from multi-allergy syndrome”
“(There is) a tendency to a relapsing course”
“(In addition to the classic features), other features include (a) plethora of symptoms – usually involving multi-organ systems. The person may have a moist chest, headaches with sore muscles of the shoulders, neck and back. They may have frequency of urine or an irritable bowel. There is often oesophageal reflux with oesophageal tenderness and intermittent oesophegeal spasm. Chest pain may be intermittently prominent, and may be severe enough for hospital admission (and there may be) palpitations and a tight chest. Vision (is) often blurred, (with) stinging -- often burning -- pain behind the eyes (and) sensitivity to light. (There may be) sore joints”
“The commonest mistake doctors make is failing to take a wide enough view (with) an adequate systems review when encountering apparently unconnected complaints”
1985
Persisting Illness and Fatigue in Adults with Evidence of Epstein Barr Virus Infection
Stephen E Straus et al
Annals of Internal Medicine 1985:102:7-16
(Note that in the US, the condition was at that time thought to be associated with the Epstein Barr (glandular fever) virus and so was known as chronic EBV disease)
“By all regards, including formal evaluations, many of these patients appeared to be neurotic. However, our detailed studies have uncovered a series of subtle, yet objective, organic abnormalities in these patients”
“This disorder is not rare”
“It is of immeasurable benefit to patients with this disorder to document an organic basis for their complaints”.
1985
The postviral fatigue syndrome – an analysis of the findings in 50 cases PO Behan, WMH Behan, E J Bell Journal of Infection 1985:10:211-222
“Our data confirm the organic basis of the illness (and) suggest that it is associated with disordered regulation of the immune system and persistent viral infection”
“The illness was severe, with a high morbidity and a disastrous effect on their lives”.
1985
Electrophysiological studies in the post-viral fatigue syndrome Goran A Jamal Stig Hansen
JNNP 1985:48:691-694
“The post-viral fatigue syndrome, also known as ME, has been recognised recently as a distinct neurological entity with increasing evidence of the organic nature of the disease”
“The most important findings were type II fibre predominance, subtle and scattered fibre necrosis and bizarre tubular structures and mitochondrial abnormalities”
“About 75% of the patients had definitely abnormal single fibre electromyography results. This was regarded as evidence of abnormality in the peripheral part of the motor unit”
“We conclude that we have shown clear electrophysiological evidence of an abnormality in the peripheral part of the motor end unit in patients with post-viral fatigue syndrome”.
1986
Correlation between allergy and persistent Epstein-Barr virus infection in chronic active EBV infected patients George B Olsen James F Jones et al
(Note that in the 1980s (ME)CFS was known as Chronic EBV Disease)
“Eighty percent of patients demonstrate clinically significant IgE mediated allergic disease, including food and drug reactions”
“The data indicate that patients have a high association with hypersensitivity states”
“Percent positive responsiveness to allergens is consistent with the high degree of allergy observed in these patients”.
1987
The postviral fatigue syndrome: a review MI Archer
JRCGP 1987:37:212-216
“Relapses are precipitated by undue physical or mental stress”
“However compelling the evidence for an hysterical basis may be, there is further, equally compelling, evidence of organic disease”
“Some patients do have frank neurological signs”
“Muscle biopsies showd necrosis and type II fibre predominance”.
1987
J Campbell Murdoch
The New Zealand Family Physician 1987:14:51-54
“Two hundred patients fitting the criteria were seen between January 1985 and December 1986”
“All had other symptoms, the most common of which were irritability, lack of concentration, short-term memory problems, vertigo, visual upset, recurrent sore throat, difficulty with breathing, palpitations, abdominal distension and diarrhoea”
“On examination there were two important common findings – the presence of acute tenderness in the muscle bulk and a positive Romberg’s sign, indicating vestibular upset”
“17% of patients had a positive smooth muscle antibody and a further 11% had a weakly positive SMA. 4% had anti-nuclear antibody and two patients had weakly positive thyroid autoantibody”
“This syndrome has about the same prevalence as Parkinson’s disease and is more prevalent than multiple sclerosis”
“The clinical findings strongly suggest that the musculature and the central nervous system are the main sites of disorder in these patients”
“In addition, nuclear magnetic resonance revealed abnormal muscle metabolism”
“Such patients become immunocompromised. That ME patients are immunocompromised is beyond question”
“Surely the underlying message is that patients with this syndrome need not await the solving of this puzzle
before they are accorded the sick role (and) in the interim, it is our duty to care for them as sick”.
1987
Phenotypic and functional deficiency of natural killer cells in patients with Chronic Fatigue Syndrome Michael Caliguri, Dedra Buchwald, Paul Cheney, Daniel Peterson, Anthony L Komaroff et al
J Immunol 1987:139:3306-3313
“These studies show that a majority of patients with (ME)CFS have low numbers of NKH1 T3- lymphocytes”
“When tested for cytotoxicity against a variety of different target cells, patients with CFS consistently demonstrated low levels of killing”
“In this study we demonstrate that a majority of patients with (ME)CFS have abnormally low numbers of NKH1+T3- cells that result in a distinct NK subset abnormality, as well as a deficiency of cytotoxicty against both standard and viral-infected targets”
“(This study) will hopefully improve our understanding of the immunopathogenesis of this illness”.
1987
“Drug therapy is not recommended in general, and there are some drugs, particulary anaesthetics, that can have disastrous effects”.
1987
“Certain factors are almost guaranteed to worsen ME. Surgery and general anaesthetics may cause relapse”.
1988
A Consultant Anaesthetist (Dr F.L.M of the McNeil Centre for Research in Anaesthesia, Philadelphia)
“When there may be neural involvement by a disease, spinal or epidural anaesthesia is not recommended because of the risk of worsening symptoms”
“Normally, a depolarizing muscle relaxant is used, (but) in persons with neuromuscular disease such as demyelination, which has been decribed for (ME/CFS), this drug has a known risk of causing potassium release from muscle, which can lead to cardiac arrest”
“Because of chronic muscle weakness, breathing may be impaired (and) muscle weakness increases the risk of respiratory failure”
“More care than usual is appropriate in the case of (ME/CFS)”.
1988
Postviral fatigue syndrome PO Behan WMH Behan
Crit Rev Neurobiol 1988:4:2:157-178
“Any kind of muscle exercise can cause the patient to be almost incapacitated for some days afterward. In severe cases, the patient is usually confined to bed”
“Psychiatric diagnoses abound: many patients will already have been labelled as neurotic, neurasthenic, or depressed”
“What is certain is that when one reviews PFS with its clinical features and laboratory results, it becomes plain that this is an organic illness in which muscle metabolism is severely affected”.
1988
Human Enteroviral Infection EG Dowsett
J Hosp Inf 1988:11:103-115
“Enteroviral syndromes range from trivial to severe and many are unrecognised or underinvestigated”
“Myalgic encephalomyelitis has been the cause of more than 50 epidemics. Serious (neurological) sequelae are common. Enteroviral infections in humans, as in animals, may be persistent”
“The main features (of ME) are prolonged fatigue following muscular exercise, an extended relapsing course which, unlike other postviral fatigue, lasts for months or years”
“An association with neurological, cardiac and other characteristic enteroviral complications (including) pancreatitis has long been recognised as part of severe generalised enteroviral infection”.
1988
Postviral fatigue syndrome: persistence of enterovirus RNA in muscle and elevated creatine kinase
LC Archard, NE Bowles et al
JRSM 1988:81:325-331
“These data show that enterovirus RNA is present in skeletal muscle of some patients with postviral fatigue syndrome up to 20 years after onset of disease and suggest that persistent viral infection has an aetiological role”
“These results provide further evidence that Coxsackie B virus plays a major role in ME, either directly or by triggering immunological responses which result in abnormal muscle metabolism”.
1988
Transmissible disease and psychiatry RP Yonge
JRSM 1988:81:322-325
“This was the first time that it was possible to show unequivocally that there was an organic basis for the fatigue experienced by a patient diagnosed as having postviral syndrome”
“Nuclear magnetic resonance (imaging) has shown a metabolic basis for the fatigue experienced by some patients diagnosed as suffering from postviral fatigue syndrome”
“We have shown that muscle fatigue and weakness for which there has previously been no explanation is indeed in the muscle rather than in the mind”.
1988
Chronic fatigue syndromes: relationship to chronic viral infections Anthony L Komaroff
“The fatigue and associated symptoms are debilitating in all patients and can be fully disabling in some”
“There are a group of conditions which go by different names but which may share a final common pathogenic pathway. (These include) true chronic mononucelosis; another, much less frequent group have apparent severe chronic active EBV infection; another chronic, fatiguing illness is called myalgic encephalomyelitis; another illness characterized by chronic fatigue is fibromyalgia (and) finally, there are patients with what we now call chronic fatigue syndrome”
“One simple piece of evidence that these (“CFS”) patients are suffering from an ‘organic’ illness is the sudden onset of the illness in 85% of the patients”
“A few of the individuals in our group had acute neurologic events: primary seizures (7%); acute, profound ataxia (6%); focal weakness (5%); transient blindness (4%) and unilateral parasthesias not in a dermatomal distribution”
“On past medical history, the only clearly striking finding is a high frequency of atopic or allergic illness in approximately 50%”
“On physical examination, unusual and abnormal findings are observed in up to 50% of patients, (including) hepatosplenomegaly”
“Because of the neurologic and cognitive symptoms, (some) patients have had lumbar punctures. In 45% of the patients, there was pleocytosis (the presence of an abnormally large number of lymphocytes in the cerebrospinal fluid). In several patients, the lymphocytes were described as ‘atypical’ ”
“It is the judgment of the neuropsychologists that the pattern of test performance suggests an ‘organic’ deficit, rather than cognitive dysfunction secondary to mood disorder”.
1988
Allergy and the chronic fatigue syndrome Stephen E Straus et al
J Allergy Clin Immunol 1988:81:791-795
“Many patients report inhalant, food or drug allergies (and) this article emphasizes our assessment of one of (the syndrome’s) more common manifestations, allergy”
“Allergies are a common feature of patients with the chronic fatigue syndrome”
“Attempts to avoid all the allergens further isolate the victims of ‘total allergy’ ”
“A variety of immunologic abnormalities can be detected in patients with the chronic fatigue syndrome, abnormalities that suggest that the immune system may participate in the pathogenesis of this disease”
“It is possible that individuals with a heightened reactivity to allergens also respond more vigorously to certain infectious antigens. Inherent hyper-responsiveness would be the initiation by certain infectious agents of a level and duration of lymphokines and interleukin release that would in themselves perpetuate the reactive symptoms of the syndrome”
“Among the features of this syndrome is a high prevalence of allergy, an allergy that appears to be substantial”.
1988
FHN Spracklen
“The frequency of this condition is demonstrated by the increasing number of ME associations being founded around the world”
“The strength of the ME lobby in the UK is illustrated by the fact that the Member of Parliament for Clydesdale, Jimmy Hood, drew attention to ME with the first reading of a Bill on 23rd February 1988 and the second reading on 15th April 1988. This was used to attract public attention and counter the suffering and injustice caused by this terrible illness”
“Hood requested an annual report on progress made in investigating the causes, effects anmd treatment of ME”
“A promise was given by the Parliamentary Under-Secretary of State for the Department of Health and Social Services, Mrs Edwina Curry, that ME was recognized under the NHS and would be treated correctly in all NHS hospitals”
“The difficulty in understanding (ME)CFS is that one is probably dealing with several different entities, all of which can result in the Ramsay triad of (i) muscle fatiguability, where even after a minor degree of physical effort, three or more days may elapse before muscle power is restored; (ii) an extraordinary variability or fluctuation of symptoms even over 24 hours; and (iii) an alarming chroncity”
“In Mowbray’s opinion, 62% of cases are due to persistent infection with enteroviruses, especially when muscle fatigue occurs only on exertion”
“Mowbray stresses that pericraditis is found in 10% of patients”
“Reflecting British thinking, Dowsett has stated that the evidence for persistent enteroviral infection is so strong that the use of the term CFS as opposed to ME is to be deplored”
“There is no question that fatigue is worsened by exercise”
“It seems unlikely that the neuropsychiatric symptoms described in this syndrome are causative”
“Attempts to invoke concepts like mass hysteria (and) psychosomatic illness seem unwarranted”
“Two-thirds of patients report respiratory or gastro-intestinal symptoms”
“While the onset in 20% of cases may be insidious, the remainder follow acute vertigo, Bornholm’s disease, pericarditis, herpangina, thyroiditis, parotitis, viral meningitis or acute visual disturbances”
“Electron microscopy has shown increased mitochondria and ‘bizarre tubular structures’ ”
“Periods of physical stress should be avoided”
“Since exertion and physiotherapy are known to aggravate symptoms, rest is probably the most important treatment”.
1989
The Chronic Fatigue Syndrome Anthony L Komaroff, Stephen E Straus, Nelson M Gantz, James F Jones
Ann Int Med 1989:110:5:407
“We agree that primary psychiatric disease is common in patients with fatigue and that only an occasional patient seeking medical care for chronic fatigue has a well-recognised organic illness”
“We believe there is another disorder, the chronic fatigue syndrome, that is likely to be an organic disorder”
“A critical question has not been addressed: are patients fatigued because they have a primary mood disorder, or has a mood disorder developed as a secondary component of a chronic organic illness?”
“We are concerned about the interpretation of data: many of the instruments base the diagnosis of psychiatric disease on the presence of symptoms that could well reflect an underlying organic illness”
“It would be inappropriate to conclude that patients with chronic fatigue had only a primary psychiatric disorder”.
1989
Statement to the (USA) House Appropriations Subcommittee, 25th April 1989
James F Jones, National Jewish Center for Immunology, Denver
CFIDS Chronicle: Spring 1989:28-30
“For the patients, there is no question that the illness exists. For the physicians who see these patients, the similarities among them allow ready identification of a distinct clinical illness. For those who scoff at this
concept, one can only query as to what happened to their curiosity and their ability to listen to patients”.
Nancy Eby, Seymour Grufferman et al
In: Natural Killer Cells and Host Defense. Ed: Ades EW and Lopez C. 5th International Natural Killer Cell Workshop. Pub: Karger, Basel, 1989:141-145
1989
Stephen E Straus, National Institutes for Allergy and Infectious Diseases
CFIDS Chronicle: Spring 1989:77-78
“Many of the immunological and physical features of ME/CFS cannot be explained by mental illness”.
John Esdale, Rheumatologist, Montreal General Hospital.
CFIDS Chronicle: Spring 1989:79
“It is a real organic problem and people who have it don’t need the additional stress of hearing doctors tell them they are crazy”.
1989
CFIDS in Children David S Bell, Instructor in Paediatrics, Harvard Medical School
CFIDS Chronicle: Spring 1989:34-37
“The most obvious factor is of course the severity of CFIDS”.
1989
Chronic Fatigue Syndrome Gerald H Ross et al
Canadian Medical Association Journal 1989:140:361
“We have found that many people with this clinical picture have concomitant food and chemical sensitivities”
“We were therefore greatly surprised to learn from Dr Holland (ibid: 706) that ‘it would be non-therapeutic to offer such a patient empathy’ and that we must not condone a belief in a ‘non-existent disease’ ”
“These statements are difficult to reconcile with the immunologic abnormalities, disorders of muscle metabolism and abnormal results of muscle biopsies found in such patients”.
1989
Chronic Fatigue Syndrome Gerald H Ross, William Rea et al
“Being unable to find physical diagnoses for (ME)CFS does not necessarily mean that psychologic illness is the cause. It may simply be that our understanding of the factors precipitating the illness is far from complete”
“Medical history teaches us that once physical causes for ‘psychologic’ symptoms are discovered, the condition moves as if by magic from the psychiatic to the medical realm”
“It is our experience that a substantial percentage of (ME)CFS cases may arise or be worsened by adverse reactions to components of the environment, such as food, inhalants and chemicals”.
Carolyn L Warner
(also in Neurology, March 1989:39:3:Suppl 1:420)
“The abnormalities we found provide evidence for central nervous system and neuromuscular involvement”.
1989
Chronic Fatigue J Cuozzo
JAMA 1989:261:5:697
“The disabling weakness and exhaustion a patient with ME/CFS experiences is so profound that ‘fatigue’ is probably an insult”.
1989
Immunological abnormalities in the chronic fatigue syndrome Andrew R Lloyd, Denis Wakeford, Clement R Broughton and John M Dwyer
Med J Australia 1989:151:122-124
“A concurrent immunological disturbance is likely to be associated with the persistence of viral antigen”
“The finding of significantly increased numbers of peripheral blood mononuclear cells that express class II histocompatibility antigens (HLA-DR) in our patients implies immunological activation of these cells”
“These cell-surface antigens may have been induced by interferons or other cytokines. Once activated, these cells may continue to produce the cytokines which may mediate the symptoms of CFS”.
1989
Myalgic encephalomyelitis: postviral fatigue syndrome and the heart Norman Grist
BMJ 1989:299:1219
“Similar immunological and metabolic disturbances in myalgic encephalomyelitis may also result from chronic infection, usually with enteroviruses, providing the organic basis of the postviral fatigue syndrome”
“This condition is characterised by severe fatiguability and recuperation through rest. The myocardium, however, cannot rest --- except terminally”.