Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett
WHAT IS RESEARCH? It is simply an attempt to discover the truth. However, even in 1999, this search may still concentrate on one of 2 alternate pathways:
The METAPHYSICAL (or philosophical) route which seeks to establish truth purely by reason and argument.
The PHYSICAL (or scientific) path which sets out to determine facts by systematic investigation of material events and by experiment.
The metaphysical approach bears much the same relationship to the scientific as ASTROLOGY (which involves the influence of the stars on human affairs) does to ASTROPHYSICS (which determines the chemical and physical composition of astral bodies).
Although research funding for the study of ME is minimal in the UK, the major sources (totalling some £5 million in recent years) are non governmental agencies such as the Pharmaceutical and other industries. The major beneficiaries are, without doubt, members of the psychiatric profession who have exhumed ancient terms such as "hysteria" and invented new ones such as "somatisation" to explain that patients suffering from ME perpetuate their own illness. Previously reputable medical journals concur with this strange philosophy(11.)
In the mid 1980’s, the incidence of ME had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on "fatigue"(10.) (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. However, a "fatigue" definition (which also omits any reference to children) has proved disastrous for research in the current decade. Whether in its original form or in the 4 redefinitions which have followed, most research workers, led by the Americans are now calling for an urgent change (omitting "fatigue") so that like can be compared with like in international ME research.
Unanswered Questions: do inconsistencies matter in medicine? By Margaret Williams, 10th September 2005
Following recent posts about the intention of members of the Wessely School / One-Health company to persuade Government agencies to implement a national programme of cognitive behavioural therapy and graded exercise regimes for those with alleged "behavioural" disorders in which they include "CFS/ME" (see Co-Cure ACT: "Proof Positive?": 2nd September 2005 and "More Proof Positive?": 4th September 2005), there are numerous inconsistencies that seem to remain unaddressed by One-Health company lobbyists. They include (i) the irrationality of drawing conclusions across differing patient populations (for example, lumping together those with primary psychiatric disorder and those with primary organic disorder and then claiming that this amalgamation represents one single "behavioural" disorder); (ii) the absurdity of relying on assumptions as the basis for a compulsory management regime (for example, that ME/CFS patients obtain secondary gain); (iii) the divergent assertions about the efficacy of cognitive behavioural therapy; (iv) the inherent danger of applying a "one-size fits all" management policy to those with "CFS/ME" and (v) the opposing evidence of these psychiatrists’ intention to claim "CFS/ME" as a psychiatric disorder.
Alterations in muscles of CFS patients at morphological, biochemical and molecular level. Pizzigallo E, Di Girolamo A, Montanari G, Dragani L, Vecchiet J, Calella G.
‘Our results agree with those of other AA (Behan et al., 1991; Gow et al., 1994). The alterations are compatible with a myopathy of probable mitochondrial origin. This could explain the drop in the functional capability of the muscle as a reduction in potency but, above all, as a reduction in resistance. In conclusion, even if CFS seems to be attributable to mitochondrial and/or muscular alterations, a damage in the central nervous system cannot be excluded. This could explain the neurophychological, behavioral, and neuroendocrinological alterations often found in these patients.
The Model of the Myth? Eileen Marshall and Margaret Williams, 17th March 2006
Perhaps Professor Peter White (editor of "Biopsychosocial Medicine: An integrated approach to understanding illness" [OUP 2005] who is currently principal investigator in the Medical Research Council PACE trials of this model) -- as well as other Wessely School members -- are unaware that the model they so fervently espouse is based not on a legitimate model by Engel after all, but simply on a myth? (For information on White's book, see "Proof Positive?" on Co-Cure ACT: 2nd September 2005).
The papers by Susanna Agardy referred to in the paper above, are available at the links below:
DOES GRADED EXERCISE THERAPY IMPROVE POST-EXERTIONAL MALAISE IN CFS?
‘People with CFS/ME are being increasingly urged to exercise to improve functioning. In the same editorial the problem of post-exertional malaise is acknowledged: 'the cardinal phenomenon of fatigue in CFS is characterised by a marked and prolonged exacerbation of symptoms following minor physical activity'[1]. As CFS/ME people with this problem know, this exacerbation is often delayed and brings into play many symptoms. This should be enough to indicate that there is something extraordinary, rather than just exacerbated fatigue happening here. To what extent can the results of these studies be generalised to people with post-exertional malaise?’
Susanna Agardy's letter to Chris Clark
‘You might also ask, in the interest of clear unambiguous research, how they get the positive results for CFS/ME people in GET studies. You could ask why the Oxford Criteria are repeatedly are used for selection of subjects, when these criteria do not even include 'post-exertional malaise', that is, exercise intolerance, the distinguishing feature of CFS/ME. The use of the Oxford Criteria and of the ambiguous CDC criteria in exercise studies invites an unknown number of the subjects to participate, who very likely have idiopathic fatigue or something else. The results are then passed off as applying to ME/CFS people and widely imposed on us. The conclusions of these flawed studies acquire the status of self-evident truth by merely being repeated uncritically, ad infinitum. The PACE study, using the same inappropriate criteria, seems to be expected to put the cream on the cake and to confirm what is already held to be the truth.’
More on the Myth? by Eileen Marshall and Margaret Williams, 21st March 2006
What can explain the delusion that prevents certain psychiatrists from engaging with reality? Despite the significant evidence that destroys their misconceptions and shows their beliefs about ME/CFS to be wrong, Wessely School psychiatrists persist in their belief that it is a behavioural disorder that they believe is synonymous with "neurasthenia" and they continue tenaciously in their efforts to get ME/CFS re-classified as a mental disorder. Evidence-based reality seems entirely lost on this group of psychiatrists.
(Note: If the "biopsychosocial" approach worked and did not result in serious relapse, and if the biological factors were "largely reversible", there would be no long-term sufferers from ME/CFS because patients are desperate to regain their health and independence. The GMC recently criticised and struck off a doctor for practising outside his area of expertise. If psychiatrists attempt to claim dominion over " a wide range of disorders", they might be at similar risk because it is not possible for them to be experts in such complex fields as vascular biology or gene expression that are known to be disrupted in ME/CFS. Wessely himself stated at his Gresham College lecture on 25th January 2006 that he did not understand immunology).
Exercise capacity and immune function in male and female patients with chronic fatigue syndrome (CFS). Snell CR, Vanness JM, Strayer DR, Stevens SR.
‘A significant multivariate main effect was found for immune status (p < 0.01), with no gender effect or interaction. Follow-up analyses identified VO2(peak) as contributing most to the difference. These results implicate abnormal immune activity in the pathology of exercise intolerance in CFS and are consistent with a channelopathy involving oxidative stress and nitric oxide-related toxicity.’
Is Stress more than a modern buzz word? by Dr Elizabeth Dowsett
"The major disadvantage of this illness is not a medical one but relates to a social climate of opinion in the media and medical press, which ascribes this serious neurological disability to some type of "personality disorder" rather than to underlying organic causes, of which we now have overwhelming research evidence. While this monstrous distortion of the facts blames the patient for deliberately causing and maintaining the illness, it conveniently absolves the statutory caring agencies from caring."
‘Response to cognitive behaviour therapy -whereas any regime which can encourage patients with depression to discard or distract their damaging unrealistic morbid thoughts is helpful, patients with ME are usually capable of greater insight and understanding about their illness. Unfortunately, ME sufferers are too often denied care in our society, so it is essential that they should remain as well informed as possible about treatment options and not ‘brainwashed’ into disbelieving their own symptoms.’
Differences between ME & CFS by Dr Elizabeth Dowsett
"There are actually 30 well documented causes of ‘chronic fatigue’. To say that ME is a ‘subset’ of CFS is just as ridiculous as to say it is a ‘subset’ of diabetes or Japanese B encephalitis or one of the manifestly absurd psychiatric diagnosis, such as, ‘personality disorder’ or ‘somatisation’.
ME is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile"
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 myalgic encephalomyelitis (ME), 2000
[Contains excellent information about Simon Wessely]
‘It should be noted that there is no evidence of maladaptive beliefs, nor of phobic avoidance of activity in patients with ME. In contrast to claims made by the "Wessely School", other more rigorously controlled studies have found low rates of depression. Longitudinal studies using appropriate measures have shown that patients' attributions to a physical cause do not affect outcome; moreover, research on patients with ME indicate that a belief in a biological cause is not associated with poor mental health. There has been no study assessing the effectiveness of graded exercise or cognitive behavioural therapy in ME or in strictly-defined CFS. .
‘As long ago as 1988, young people with ME were being subjected to psychiatric "distraction therapy"; the most well-known case is that of Ean Proctor from the Isle of Man, then a twelve year old boy who, against his parents' wishes and with no prior warning, was forcibly taken from his parents. A policeman was standing by and a Court Order had been obtained (which was supported - in writing-by Wessely). Before being referred to doctors in London, Ean had been subjected to terrifying ordeals: his local doctors did not believe in ME so they devised activities which were designed to prove that the child's symptoms were simulated. One such "distraction therapy" involved taking the petrified child on a ghost train in the expectation that he would cry out in fear on 3rd June 1988 Wessely had written a letter saying that Ean's inability to speak was " elective mutism").’
Psychiatrists of the "Wessely School" seem to think that the standard of evidence required is different in the discipline of psychiatry: for example, they always quote extensive reference papers in supposed support of their published articles but with this particular group of psychiatrists, the impartiality of the references they cite needs to be scrutinised, because these psychiatrists often name just the lead author and perhaps two or three others and then write "et al". This is customary practice when listing medical references, but with this group, it conceals the fact that they are often simply citing themselves and their own papers. It used to be the case that editors of medical journals would permit no more than two or three self-references for an article. Seemingly, executive editors now make no stipulation about the number of self-references permitted, which automatically opens the door for bias and bad science and for those who are unashamedly self-promoters.’
Myalgic Encephalomyelitis is not fatigue by Maryann Spurgin Ph.D.,
The defining characteristic of M.E. is that patients relapse with physical exertion and develop disease progression with continued physical exertion. Hence, the defining characteristic is exercise intolerance, post-exertional muscle weakness, generalized weakness, faintness, and pain; and post-exertional relapsing of symptoms. In some cases symptoms remit with rest, and in other cases they do not. In fact, recent research on a prominent subset of the illness showed that postural stress and exercise exacerbated cardiac insufficiency in this disease. If a patient improves with exercise, that patient does not have M.E. and may have some illness other than M.E. (for example, arthritis, depression, osteoporosis, and a number of medical conditions do improve with exercise).
Unlike somatization disorder, M.E. is not "medically unexplained." M.E. is a disease which, like lupus, has no single marker. While M.E. is a multi-system disease with many organ and bodily systems affected, producing a myriad of symptoms. Cognitive Behavioral Therapy (CBT), Graded Exercise Therapy (GET), and antidepressants are not effective treatments for M.E. In fact, these therapies generally make M.E. worse. For an excellent criticism of the CBT/GET studies from the Canadian Clinical Case Definition, see cfids-cab.org/ccpc-1.html.
Which Interventions are Helpful to Patients with ‘CFS/ME’? A REVIEW OF THE EVIDENCE
Those who seek to respond appropriately to the needs of patients presenting with a diagnosis of ‘Chronic Fatigue Syndrome’ [CFS] – whether policy makers at political level, service planners, or providers on the ground – should be aware that evidence for the efficacy of behavioural interventions (graded exercise/activity and cognitive behavioural therapy [CBT]) is contradictory and by no means conclusive. (see pages 5-13 )
"Much of the current thinking about CFS and M.E. is driven by models of deconditioning. … But what if exercise results in a huge delivery of free radicals, not because of disuse of muscle and deconditioning, but because there is something organically wrong with muscle metabolism? What value exercise in these circumstances? These are crucial questions, and it is important to remember that the current evidence [sic] for deconditioning is not based on scientific investigations of muscle but on suppositions about patients with 'fatigue'." 58
"By far the most unhelpful form of treatment was considered to be Graded Exercise Therapy (GET). This finding may surprise some readers, given the current medical popularity of this approach. However, these patients’ perceptions are supported by data from previous experience: of the 39% of our members who had actually used Graded Exercise Therapy, a shocking 82% reported that their condition was made worse by this treatment. On the basis of our members’ experiences we question whether GET is an appropriate approach for patients with ME. It is worth noting that some patients were not severely affected before trying GET. Thus, it is not only people with severe ME who may be adversely affected by this form of treatment."
Exercise Capacity in Chronic Fatigue Syndrome Pascale De Becker, PhD; Johan Roeykens, PT; Masha Reynders, PT; Neil McGregor, MD, PhD;
‘This study clearly shows that patients with CFS are limited in their physical capacities. Based on the American Medical Association Guidelines for Impairment Rating,51 our 55.2% of patients who had a VO2max of less than 20 mL/kg per minute correspond to class 3-4 on the disability scale, indicating moderate to severe impairment.51’
‘CFS can and does result in prolonged debilitation.3, 4, 51’
Chronic fatigue syndrome Neil C Abbot (a,b) and Vance Spence (a) The Lancet 2006; 367:1574
The overwhelming focus of the Seminar is on one model of chronic fatigue syndrome-the biopsychosocial model, a construct which contrasts with the biomedical model which implies that a primary disease entity exists and that biopsychosocial aspects are secondary (the two models discussed in the report to the UK Chief Medical Officer in 2002 [3]. The biopsychosocial model is supported only by researchers with a professional interest in psychosocial aspects of illness who have acquired the funding to test their hypotheses.
Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists by Eleanor Stein MD FRCP(C)*[see notes on this text below]
If ME/CFS were a psychiatric disorder, one would expect psychological symptoms to predict outcome. However this is not the case. Studies consistently show that symptom severity at onset and whether one meets full criteria for CFS [ie. Myalgic Encephalomyelitis] predict prognosis in ME/CFS (Darbishire et al, 2005) but psychological symptoms and cognitive beliefs do not (Deale et al, 1998;Jones et al, 2004a). (Darbishire et al, 2005;White et al, 1998)
‘Although Cognitive Behavior Therapy (CBT) is widely recommended for patients with ME/CFS, it is far from clear whether cognitive behavior therapy is helpful for most patients. CBT to convince a patient that s/he does not have a physical disorder is disrespectful and inappropriate.’
Despite the fact that worsening of symptoms after exercise is a compulsory criteria for diagnosis of ME/CFS, graded exercise programs have often prescribed for such patients. Presumably these recommendations are made on the assumption that exercise will be accompanied by improved aerobic capacity, increased anaerobic threshold and improved exercise tolerance. However, in patients with ME/CFS, neither exercise tolerance nor fitness has been shown to improve with exercise programs.
[*Note: This article is tentatively included as it contains some very good factual information on the lack of evidence and uselessness of CBT and GET and the psychological approach in general in M.E. patients. However, perhaps due to the author’s area of expertise, parts of it also (in complete contradiction) greatly overstate the need for psychiatric intervention and involvement in M.E. treatment and diagnosis; ideas not supported by this website, nor the existing literature and biomedical research on M.E.]
Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett
"To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague "fatigue" entities, must appear more of a marketing exercise than a rational basis for essential international research. It was not always so unnecessarily complicated!"
Repetitively negative changing T waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome - left ventricular dysfunction in a cohort. Lerner AM, Lawrie C, Dworkin HS. Chest 1993; 104(5): 1417-21.
‘The patients with CFS all had abnormal Holter readings’ ‘All 60 patients with CFS showed repetitively flat to inverted T waves alternating with normal T waves.’
AN INTOLERABLE OBSCENITY by Gurli Bagnall, 21 March 2005
The job description for Trainee Clinical Fatigue Therapists in some of the new network of 12 Fatigue Clinics across England, was the last straw. While the language used was not unexpected, to see it in black and white was nevertheless a body blow to those who suffer Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) as defined by the WHO, for it is at them that the proposed "services" are aimed.
The Pros and Cons of ME clinics by Gurli Bagnall, 27 July 2006
'What life saving strategies do the clinics have? How do the Clinics deal with heart failure or any organ failure for that matter? How many will die of such failures, or cancers or despair -induced suicides while undergoing a course of Cognitive Behavioural Therapy and psychotropic drugs? In whom should we have faith. "Seize this opportunity," Ms. Adcock urges. What opportunity? From my hospital-type bed and motorized wheel chair, I don't see the new clinics presenting any opportunity at all.’
Muscle fibre characteristics and lactate responses to exercise in chronic fatigue syndrome Russell J M Lane,a Michael C Barrett,b David Woodrow,b Jill Moss,b Robert Fletcher,b Leonard C Archardc a
‘Muscle histometry in patients with chronic fatigue syndrome generally did not show the changes expected as a result of inactivity. However, patients with abnormal lactate responses to exercise had a significantly lower proportion of mitochondria rich type 1 muscle fibres.’
Editorial: Our Conflicted Medical Journals
The New York Times, July 23, 2006
‘Leading medical journals seem to be having a difficult time disentangling themselves from the pharmaceutical and medical device industries. If they cannot stop printing articles by scientists with close ties to these businesses, they should at least force the authors to disclose their conflicts of interest publicly so that doctors and patients are forewarned that the interpretations may be biased.’
[Bias in medical journals is an issue particularly relevant to M.E.]
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia:additional considerations for the MRC in relation to the PACE trials by Margaret Williams, 5th January 2005
For convenience, information already provided for the MRC PACE trial investigators about the most recognised differences between ME/CFS and FM is reproduced and summarised here:
In respect of the MRC CFS trials, there are known and established differences between FM and ME/CFS and many believe that the FM community and the ME/CFS community have a right to know why patients suffering from both disorders are to be amalgamated in the MRC trials that claim to be studying "CFS".
Likewise, an explanation is required as to why GPs are suddenly to be offered financial incentives to identify and refer people with FM to the new CFS centres specifically so that such patients can be entered into the MRC studies of "CFS".
UNUM Provident, Dr Mike Sharpe and Cognitive Behavioural Therapy: information which the MRC might wish to consider Eileen Marshall; Margaret Williams 12th April 2003
‘Both the worldwide ME/CFS community and the MRC RAG on "CFS/ME" may be particularly surprised at Dr Michael Sharpe’s evidence in Dr Morris’ legal action. Sharpe, author of the article relied upon by UNUM, admitted that (quote) "two subsequent controlled trials found cognitive behaviour therapy to offer no benefit over non-specific management" (Exhibit #13-12).
Given that the MRC’s RAG draft document on future research strategies for "CFS/ME" (compiled by Dr Chris Watkins, whose title is MRC Programme Manager for Research on Mental Illness and Drug Addiction) states at paragraph 166 that the direction of future management strategy in the UK should be CBT and graded exercise regimes, and that further research should "concentrate on the effects of these interventions across the spectrum of the disorder" (ie. on both the least severe and on the most severe cases), members of the MRC Research Advisory Group may now, in the light of Dr Sharpe’s explicit evidence, wish to re-consider their preferred management strategies for this complex neuro-endocrine-immuno-vascular disorder. ‘
ME: WHY NO ACCOUNTABILITY?
A synopsis for the UK Parliamentary Inquiry By Professor Malcolm Hooper and Margaret Williams, 18th August 2005
‘ME is a multi-system disorder of extraordinarily incapacitating dimensions from which complete recovery is unlikely. It can be a devastating condition, with some patients being unable to speak or swallow and needing to be tube-fed for years; at least 25% of sufferers are severely affected, yet patients are accused of malingering. On the advice of Wessely School psychiatrists, state benefits are refused or withdrawn, even in cases of ME where they have been awarded for life. Many with ME commit suicide: in the UK, figures are said to run at one ME suicide per month. This is not because patients are psychiatrically ill: it is because they are completely unable to look after themselves and are too sick to survive without the necessary support, both medical and financial.’
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