Cognitive behavioural therapy for ME/CFS sufferers: How strong is the evidence? ME Research UK, The Gateway, Perth; and the Department of Medicine, University of Dundee

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 ME community may like to know that McLaren presented a paper entitled "The biopsychosocial model and scientific fraud" at the annual congress of RANZCP in May 2004, which is available from the author at Northern Psychiatric Services, Darwin, Northern Territory, Australia.

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, 21^st 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 25^th 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.

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."

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

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 Archard^{c 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, 5^th 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 12^th 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. ‘

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.’

Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research by Professor Hooper 2006

‘Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME/CFS by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness

I would propose that the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of ME, already carried out by several leading research groups, now requires significant funding.’

ME Exists: True or False? by Eileen Marshall and Margaret Williams,18th August 2006

It seems that the powerful vested interests groups who now control the Establishment will tolerate no opposition, with the result that NHS doctors' freedom to practice medicine is increasingly proscribed.

With no hope of funding to establish a diagnostic test and with no will by the Royal Colleges or Government to formulate or accept an accurate case definition, the situation relating to ME/CFS in the UK cannot improve.

So many abnormalities have now been shown to occur regularly in cases of authentic ME/CFS that it is not only bad science to attempt to dismiss, ignore or deny a reality that can be scientifically measured, but to continue to do so must, as others have noted, border on the criminal.

CBT in ME/CFS - More Information by Eileen Marshall and Margaret Williams, 23rd August 2006

In our document "ME Exists: True or False?" we drew attention to recognised abnormalities in ME/CFS, one of which being the significant loss of grey matter in the brain with irreversible loss of grey cells, especially in Brodmann's area 9, and mentioned that this may indicate major trauma to the brain. If such trauma to the brain exists in ME/CFS, then the chance of cognitive behavioural therapy (CBT) being effective in ME/CFS is probably zero and the MRC PACE trials may be a disaster for the psychiatric lobby.

Circulating Blood Volume in Chronic Fatigue Syndrome David H. P. Streeten, MB, DPhil, FRCP, FACP David S. Bell, MD, FAAP

‘Of the 19 patients reported here, abnormalities in blood volume were very common. The most common, found in 16 of 19 patients, was a reduction in red blood cell mass. Eleven subjects had low plasma volumes, and total circulating blood volume was subnormal in 12 of 19 subjects. In some individuals this abnormality was strikingly severe. Patient #15, for example, had an RBC mass of 12.9 mL/Kg, which is 46% of the expected normal, and a total blood volume of 35.8 mL/Kg, which represents 49.7% of the expected normal value (21). In general, blood pressure measurements were not predictive of the results of circulating blood volume measurements.’

ARE MPs ASKING THE RIGHT QUESTIONS? By Campaigning for Research into Myalgic Encephalomyelitis: RiME

In May you asked the Secretary of State for Health a question about the new NHS 'CFS/ME' centres which are being developed in England. It would appear from that you are working from the assumption that people with ME welcome the centres. We beg to differ. Please read the enclosed information from our last two newsletters. As you will see, people (including health professionals) from Kent, Hants, Birmingham, Shrops, London and Manchester are either opposed to the centres or have serious concerns. We have received further complaints from other areas.

The pivotal issue in all of this is nomenclature. The Govt has both cleverly and deliberately fudged a neuro-immune-vascular disease (ME) with Chronic Fatigue and loosely defined CFS. I enclose information which contrasts the Canadian Criteria, which our supporters recognise, to the Oxford and Fukuda Criteria, which they don't. It would appear that some centres will be admitting using the Fukuda or a version of it.

People with ME deem these centres not only to be unhelpful, but to be working against their interests. Imprecise admittance criteria will produce skewed results which (1) might be used as a further excuse by the Govt for not researching the underlying physical causes of ME (the Govt, shamefully, has not invested a single penny in this area) (2) lead to a situation where peolpe with ME's benefits are linked to them attending the 'mental rehab centres'.

To the news that the funding for the centres might run out; well, many with ME are saying 'hooray!'.

There’s no smoke without fire! Some comments on the tendency to relapse in ME by Dr Elizabeth Dowsett

‘ME commonly follows a virus infection, which, at first, appears to be trivial. However, the illness soon becomes distinguishable from other forms of post viral debility (including that associated with influenza) because of its prolonged course and tendency to relapse, making it inadvisable for sufferers to return to school, college or work without adequate convalescence. In a society which rates speed, sport and entertainment so highly, slowing down to rest will be unpopular and most young people will need some persuasion. The commonest causes of such a reverse in ME appear to be mental and physical over exertion.’

Submission To The Parliamentary Inquiry Into Progress In The Scientific Research Of M.E. By The 25% ME Group (Word format)

"It seems we are constantly having to fight on different fronts concerning how ME sufferers are treated when it comes to the medical profession or the benefits agency" writes Simon Lawrence in the (Winter 2005) Newsletter of the 25% Group.

The truth is that those with ME can be so ill and not get better; they can be so ill, not just for a few weeks, but for years on end, for decades even, without remit, without any relief, while psychiatric research accrues every single penny of Government funding for itself in a fruitless attempt to research and implement an inappropriate, harmful behavioural and exercise regime:

Sufferers are far too ill to protest, and too ill to ever undergo the so called behavioural remedies being developed in their name, but will never successfully treat anyone with real ME, as one sufferer explains:

For more see: http://www.25megroup.org/Campaigning/Gibson%20Parliamentry%20Inquiry/Gibson%20Inquiry.htm

ME/CFS Politics in a Nutshell (UK) by Kevin Short

‘Ever mindful of budgets, In the UK, Government Ministers have been captured by the psychologising views of the Wessely School, Insurance Industry and the DWP ⁴ and are pursuing their ‘Pathways to Work’ project - which is set to gain momentum from 2005. A situation where sufferers of a physical neuro-immunological disease (M.E.) will be routinely referred to psychiatrists as mental health patients – and subject to harmful ‘treatment’⁵ upon pain of benefits withdrawal – is being set up. This is NOT exaggeration.

In spite of all the biomedical evidence to the contrary, these vested-interest psychologisers continuously maintain their anti-science mantra: that ‘M.E. is perpetuated by mistaken belief and sick-role behaviour’. Their well-funded lobby machine relentlessly bombards parliament and the media with disinformation - and they flood medical and trade journals with extremely low quality psychiatric ‘research’ papers.⁷ Inevitably, all of this adversely affects the views of time-pressed GPs who are simply too busy to read all the bio-medical research papers themselves.’

ME/CFS Post-Exertional Malaise and Exercise by Marjorie van de Sande B.Ed, Grad. Dip. Ed.

Even though post-exertional malaise is a hallmark feature of ME/CFS, exercise programs are often prescribed with little thought to the effect they may have on patients. As much care must be taken in prescribing appropriate exercise for ME/CFS patients as in prescribing pharmaceuticals.(5)

[*Note that recovery may be incomplete in some patients even after 'days or weeks' as this chart states; symptom exacerbation or disease progression may in fact persist for many months or years following exertion, or may be irreversible. The symptoms induced by exercise also bear little relation to mere ‘malaise’ or ‘fatigue’]

Chronic Fatigue Syndrome May Be An Infectious Cardiomyopathy Of Single Or Multiple Viral Etiology by Maryann Spurgin, Ph.D.

The most acutely perceptive and pioneering work on CFS these days is happening in a quiet corner of the country, out of the CFS limelight. The work is being conducted by A. Martin Lerner, M.D., an infectious-disease specialist at Wayne State University, along with his colleagues in cardiology. The basic thesis of their well-documented research is that CFS is an infectious cardiomyopathy of single or multiple viral etiology -- a cardiomyopathy that in many cases is progressive and degenerative. According to the theory, CFS results when an initial infection with a virus, or a reactivation of a latent virus -- for example, EBV or CMV -- attacks cardiac tissue, producing exercise intolerance, the hallmark of CFS. The human cardiac myofiber becomes the site of persistent viral infection. The infection flares up when the infected person physically exerts him or herself.

In a normal subject, an ejection fraction will rise during exercise. They note that a stationary or falling ejection fraction is abnormal. Their work cites studies showing that declining ejection fractions are not seen in normal persons leading a sedentary life. Deconditioning and a sedentary lifestyle in normal subjects are not causes of decreasing or falling left ventricular ejection fractions.

80% of an AfME survey said the clinics were a good thing by Stephen Ralph

In sticking up for Professor Pinching and the "CFS/ME" "Fatigue" Clinics the correspondent cites a recent survey where 80% of attendees state that they were satisfied with the service provided to them.

And in the next breath the correspondent states.... this survey was published in (no less than) InterAction - the publication of Action for ME who as we know are bank-rolled by the Department of Health who have given them hundreds of thousands of pounds in grants to set up these clinics based on the AfME/Westcare model with the sole aim of dishing out mental health treatments and graded exercise and nothing more.

So my comment would be... well they would wouldn't they! Of course they do not mention that they themselves or indeed Action for ME do not represent the whole ME community by far and they do not say if those attending these clinics accurately represent in any way shape or form those people who have the specific signs and symptoms of ICD10-G93.3 Myalgic Encephalomyelitis.

The fact is that this 80% figure of individuals do not present to these "Fatigue" Clinics with the specific signs and symptoms of G93.3 Myalgic Encephalomyelitis.

The Australasian Report on CFS compiled critiques by Margaret Williams, 2001

Compiled by Margaret Williams on 2 December 2001 from various critiques posted on Co-Cure

In 1996 Dr Michael Wooldridge, Minister for Health and Family Services, approved an application to Medicare to provide funding of $130,000 to the Royal Australasian College of Physicians (RACP) to produce Guidelines on the most clinically relevant and cost effective methods of diagnosing and treating CFS.

The first draft report was released in December 1997 and was heavily criticised. The second draft was released in June 2001 (this four year delay achieved nothing). As in the UK CMO’s report, the guidelines focused on the (psychiatric) management of symptoms, not on discovering their cause. They ignore the substantial evidence of organic disease.

‘The failure to mention any of the evidence of physiological and neuropsychological deficits in CFS is disappointing in a document sponsored by an authoritative body who would presumably wish to present an accurate and unbiased view of current medical knowledge…..The authors could hardly be unaware of the repeated findings by unaffiliated groups of autonomic dysfunction (and) immune dysfunction in CFS…. In conclusion, this document...will ensure that most persons with CFS in Australia will continue to be inadequately treated.’

‘The RACP seems to suggest that cognitive behaviour therapy (CBT) provides a clear understanding of CFS. This claim is unfounded and lacks evidence…CBT is not a specific strategy for CFS where its claimed benefit is still questionable….no long-term study has established that graded exercise programmes can significantly improve aerobic capacity in CFS…..It appears that the RACP has failed to recognise that post-exertional malaise is a valid CFS symptom. There is no evidence that patients with CFS demonstrate avoidance behaviour to physical activity as claimed……the second paragraph of this section is a mixture of imagination and half-truths and should be entirely deleted. The UK experience of graded exercise in CFS has shown that as a single intervention, graded exercise was associated with the highest negative grading.’

The Late Effects of ME by Dr Elizabeth Dowsett

Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common[4]. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.[16]

Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously![11,12,13]"

PACE TRIALS : The Background by K. Niven

The psychosocial model of ME is erroneous, illogical, and deeply offensive.

a.. It has caused misery and suffering to thousands of people with ME throughout Britain.
b.. It has stopped investigations into the illness, and thus hampered scientific progress towards a better understanding of the condition.
c.. It has led to children being refused home education, and sometimes even forcibly removed from homes, because their parents are suspected of making them ill (Munschausen's Syndrome by Proxy).
d.. It has led to wide-spread derision and abuse of children and adults with ME by medical personnel.
e.. Patients have often been denied a diagnosis, care and appropriate advice. In many cases, they have been given inappropriate advice or therapies - like GET and CBT - which made them worse.

There's More to the CDC's Conclusions About CFS Than Meets the Eye by Craig Maupin May 2006

Despite the spin about "biology", the three genes which Dr. William Reeves claims will direct future research and clinical care for CFS are primary to the biological footprint of post-traumatic stress disorder and anxiety. Reeves claims a recent study's outcome has alerted the Centers for Disease Control to the importance of stress response in the pathophysiology of CFS. In the study, abnormal expression of genes involving stress were uncovered in a broad array of research samples which included people with fatigue, CFS, and other unexplained conditions. And now, CDC researchers insist the study will change the way CFS is handled clinically by physicians, scientists, and insurers - very soon.

The CDC is well-positioned to enact this shift. At the moment, they possess a strong facade of flawed, yet "empirical", evidence. Reeves has also worked diligently to build strong financial and philosophical ties to advocacy leaders who are eager to assist his efforts. But more importantly, the CDC team is well-versed in the technical, yet gentle, terminology that can help move their ideas forward politically and socially. Terms like "biologically-based", "genetic predisposition", "homeostatic imbalance", "glucocorticoid receptors", and "allopathic load' assuage many CFS sufferers to a new post-traumatic stress disorder. Reeves made use of that knowledge on Thursday.

First, the CDC's Wichita CFS research subjects don't appear to be very disabled. At the press conference, Reeves touted the fact that 84 percent of the Wichita samples his staff had evaluated to have CFS didn't even know they had any illness, much less chronic fatigue syndrome. And according to a CDC study published in 2003, the average combined workload (employment and chores) of those diagnosed with CFS by the CDC's research definition was close to 48 hours per week. Apparently, these Wichita CFS sufferers, diagnosed by using the CDC's 1994 research definition, are running circles around many healthy people.

[For more on this topic see: My comments on the CDC's latest 'CFS' press release which also includes comments the latest Australian press release by Lloyd on post-glandular fever fatigue (which he calls ‘CFS’). For more information on Australian politics, see also: My comments about the current (worrying) state of Australian ME societies (These comments follow, and are relevant to, a recent book review.)]

A conflict of interests at the MRC by Stephen Ralph

As we all know here, the monies allocated by the MRC to the PACE and FINE trials have been handed to a select group of psychiatrists who themselves have and still do repeatedly claim to their own peer group audiences that "CFS/ME" is one in a group of Psychosomatoform Disorders or to put it another way.... a mental illness that causes multi-functional impairment that they claim can be treated and indeed cured using CBT and Graded Exercise Therapy.

This CBT/GET combination is being handed out to patients currently labelled with the heterogeneously labelled "CFS/ME" now referred to singularly as "this illness" at a string of mental health "Fatigue" clinics. To sweeten the pill, Action for ME has played a key part in deceiving the "CFS/ME" community by selling such treatments to patients claiming that "CFS/ME" is a real and distressing illness but at all times using language that does not emphasise the belief of mental health origin as claimed by the somatoform psychiatrists whom AfME are supporting at the very heart of the PACE and FINE trials.</