"Power Interest and Psychology" Smail D 2005 BMJ Book review - "Selling Sickness: How Drug Companies Are Turning Us All Into Patients",
comments by Douglas T Fraser
‘With reference to Dr Fitzpatrick`s remark that myalgic encephalomyelitis is "not linked to any specific drug treatment", I should like to point out however that it is linked, in the minds of some, to non- drug "treatments" dubbed Cognitive Behavioural Therapy and Graded Exercise.
One authority, Professor Simon Wessely (1), has stated that neither are "remotely curative" and are only "modestly effective", while another, Professor David Smail (2) has commented that "CBT - in fact more a kind of rhetorical construction that a serious , theory-based practice - is perhaps the least convincing of all therapies from the standpoint of a critical onlooker. In combining the `scientific rigour` of behaviourism, with the mentalism of, essentially, popular psychology, CBT is par excellence the product of professional interest....supported by its doctors through the judicious highlighting of a handful of research studies from the huge, chaotic and contradictory literature that has developed in the psychotherapy field over the past fifty years or so.."’
Squaring the Circle: Disturbing discrepancies in statements made by Professor Simon Wessely in relation to ME/CFS: some questions and answers of which the Gibson Parliamentary Inquiry needs to be aware (Word format) by Professor Malcolm Hooper, Eileen Marshall and Margaret Williams, 4th January 2006
It is a matter of record that the most severely affected (ie. those requiring DVs) are excluded from study in the UK and the Report of 2002 to the Chief Medical Officer noted this, as did the Systematic Review (2001) carried out by the Centre for Reviews and Dissemination at York University that informed the CMO’s Working Group report: ("In some studies participants were only eligible if they could physically get to the clinic. Those unable to walk or to get out of bed were automatically excluded, so it is not possible to assess whether [behavioural therapy] would be effective or even hazardous for a more severely disabled group of people").
Moreover, the severely affected are excluded from the MRC current PACE "CFS/ME" trial (the management of which is directed by Wessely, who is also responsible for randomisation and database design): "Exclusion criteria: subjects unable either to attend hospital reliably or to do therapies" (ref: Trial Identifier: 3.6). The Trial Identifier is clear (at 3.4) that: "CBT (cognitive behavioural therapy) will be based on the illness model of fear avoidance" and that "GET (graded exercise therapy) will be based on the illness model of both de-conditioning and exercise avoidance", neither of which occurs in authentic ME: studies that specifically set out to demonstrate de-conditioning (for example, Bazelmans et al: Psychological Medicine 2001:31:107-114) and exercise phobia (for example, Gallagher AM et al: Journal of Psychosomatic Research 2005:58:4:367-373) failed to do so.
It is a matter of deep concern that patients with fibromyalgia are to be intentionally included in the MRC PACE trials on "CFS/ME", the results of which will then be proclaimed to be referring to those with "CFS/ME" (see attached Appendix containing information that was sent to the MRC but was ignored).
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".
Chronic "fatigue" is not ME/CFS, but it is these Oxford criteria that have been, and continue to be, used by Wessely School psychiatrists who refer to "CFS/ME": the current MRC PACE trials use the Oxford criteria, even though it is almost unheard of for studies to use criteria that have been superceded, as is the case with the Oxford criteria. By using the Oxford criteria, the Wessely School aim of drawing in as many people as possible is more readily achieved: the MRC CFS/ME Trial Identifier is quite clear that this is the intention: "We chose these broad criteria in order to enhance recruitment" (RCT of Cognitive Behavioural Therapy, Graded Exercise and Pacing versus usual medical care for the Chronic Fatigue Syndrome"). To intentionally mix patient populations does not accord with a rigorous scientific process, yet the Wessely School proposal was approved by the MRC, which inevitably raises questions of a pre-determined agenda.
Heterogeneity of ‘CFS/ME’ The Dangers of Failure to Subgroup
The conflation of ME and strictly defined CFS with ‘chronic fatigue’ has led to the endorsement of behavioural interventions such as exercise as appropriate to all patients presently diagnosed with CFS, despite strong indications that exercise is harmful to some. This endorsement of exercise is based on a fatigue perspective, coupled with speculation regarding the possible role of de-conditioning. This is misguided, in two respects. Firstly, this perspective fails to take account of the distinctive clinical presentation of ME/strictly defined CFS. Furthermore, the speculation that patients are de-conditioned as a result of prolonged inactivity lacks an evidence base: indeed, evidence exists which would challenge this. [9]
It should be noted that research studies on behavioural interventions - i.e. graded exercise and cognitive behavioural therapy aimed at encouraging such exercise - which report beneficial outcomes have selected participants using broad fatigue criteria. Most commonly the so-called ‘Oxford criteria’ [10] 10 are used. These are even more broadly inclusive of a heterogeneous population than the definition of CFS by the US Centers for Disease Control and Prevention previously referred to. [11] Indeed, one of the co-authors of the ‘Oxford’ criteria has described them as follows:
"British investigators have put forward an alternative, less strict, operational definition which is essentially chronic fatigue in the absence of neurological signs [but] with psychiatric symptoms as common associated features." [12]
At the same time, a considerable body of evidence exists which challenges the wisdom of exercise for patients with ME/strictly defined CFS. For example, a substantial number of research studies indicate an abnormal response to exercise, including some which demonstrate the presence of physiological characteristics which would contra-indicate exercise – and in particular aerobic exercise. [13]
Conflicting Concepts? Eileen Marshall and Margaret Williams, 28th May 2005
Of particular note is the use of the word "autonomy": it seems that whereas Sir Donald’s intention is to increase all patients’ autonomy by involving them as fully as they wish in decisions about their medical care, the Prime Minister’s Strategy Unit is intent on removing ME/ICD-CFS patients’ autonomy by the pre-determined political tactic of classifying them as "mental" patients who are not to be allowed any investigations other than basic screening.
‘Does Sir Donald’s "professionalism" include the requirement for doctors to keep up-to-date with evolving scientific evidence about "controversial" disorders such as ME/ICD-CFS so that sufferers are no longer wrongly deprived of their basic rights by doctors who are intent on furthering their own careers at the expense of patients, even to the extent that (against sound evidence which these doctors continue to ignore) they deliberately create "mental" disorders designed to require "lifestyle" interventions that do not work?
The problem is that in the real world, as Sir Donald must know, Government propaganda does not equate with Government policy, and it is policy, not "professionalism", that ultimately decides how patients are treated, as many ME patients already know to their cost and as many more will doubtless soon discover.
An Inquiry by the UK House of Commons Health Select Committee into the Influence of the Pharmaceutical Industry by Margaret Williams, 28th October 2004
Given the well-known and long-term involvement with the pharmaceutical industry of certain medical advisers prominent in the ME world, the international ME community may be interested in this Inquiry.
Cognitive Impairment? Eileen Marshall and Margaret Williams, 12th May 2006
In their letter, Abbot and Spence note that Prins et al focused on only one model of the disorder --- the psychosocial model --- and disregarded the abundant (and ever increasing) evidence of measurable biomedical anomalies in (ME)CFS.
Further, Abbot and Spence point out the reliable evidence-base that shows the number of trials using cognitive behavioural therapy in (ME)CFS to consist of only 8 trials, of which 3 resulted in a negative outcome, leaving just 5 studies that claim modest benefit.
The response from Prins et al to Abbot and Spence is astonishing: "We strongly disagree with Neil Abbot and Vance Spence's one-sided biomedical point of view". Who is being "one-sided" if not the proponents of the psychosocial model?
[It is also very unlikely that any of those who saw benefit had M.E. and not merely ‘chronic fatigue’.]
Some facts about CBT & GET Stephen Ralph
CBT and GET are the favourite therapies of the psychiatric ME/CFS school, while ME and CFS are classified under ICD - G93.3 as diseases of the nervous system and not mental and behavioural disorders. Based on biased research from the university Nijmegen (the Prins study [1] that used the CDC criteria for prolonged fatigue but eliminated the other CDC criteria), the Dutch Government has decided to start a trial implementation of CBT and GET in the Netherlands. I advise all ME patients, who will become worse after this therapy to bring a charge against the Government and to submit a claim for compensation.
NHS 'CFS/ME' Centres Condemned (RiME Newsletter Autumn 2005)
Extracts from letters sent to West Kent Health Officials: Sevenoaks:
‘.... ME and Chronic fatigue are being lumped together.... The CFS Service says it will treat 'CFS/ME' with CBT sessions.. by a psychologist.. This appears to have all the hallmarks of the 'Wessely School of Psychiatrists'. There would appear to be an erroneous assumption that PWME per se have low self-esteem and motivation, and negative thoughts, and therefore become inactive... this is not the case....’
Submission to the RACP Working Group regarding the Chronic Fatigue Syndrome Draft Clinical Practice Guidelines (PDF) Author: Dr Mark Donohoe MB BS Monday, 23 February 1998
ON CBT: ‘The recurrent theme of the relationship between belief in the exclusively physical nature of the illness and poor prognosis is grossly flawed, and cannot be supported by studies (even those which purport to confirm this view) or by logic. I wish to address this once here, so that it can be referred to as it arises throughout the body of the DCPG.
And here is the problem with this whole process. Poor recovery is predicted not so much by belief in the physical nature of the disease, as by a failure to adopt the peculiar (and often demonstrably faulty) beliefs of the doctor or experimenter!’
CBT, as practiced and researched to date, is a philosophical rather than a scientific construct. Definitions, methods, mechanisms and hypotheses are totally lacking, the experimental processes are not subject to placebo control (since the mechanism is unknown, there is no way to isolate the useful aspects of the process), and poor
outcomes are ascribed to faulty beliefs on the part of the patient.
Worse, suffering people who do not fit the philosophy are subtly blamed for holding inappropriate beliefs which prevent a recovery which would otherwise have been achieved. The support of CBT by the WG is the rough equivalent of proposing ‘faith healing; in CFS.’
FOR UK PARLIAMENTARY INQUIRY INTO ME/CFS Chronological list of documents relevant to the Inquiry, authored by Professor Malcolm Hooper, Eileen Marshall and Margaret Williams, 7th November 2005
Most of the articles mentioned in this document are on the internet; all are available from Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, Department of Life Sciences, University of Sunderland, SR2 7EE, UK.
Note that Myalgic Encephalomyelitis (ME) is listed in the World Health Organisation International Classification of Diseases also as chronic fatigue syndrome (CFS) and as PostViral Fatigue Syndrome (PVFS). It is important to be aware that this disorder is not, as claimed by some psychiatrists, synonymous with chronic unexplained fatigue (to which these psychiatrists unhelpfully refer as "CFS").
A FINAL FAREWELL TO THE PSYCHIATRIC FALLACY? By Margaret Williams,13th August 2005
Given so much evidence of serious organic pathology in ME/CFS, perhaps psychiatrist Professor Michael Sharpe of Edinburgh needs to re-think his previous pronouncement that "Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service" (lecture given in October 1999 hosted by the University of Strathclyde).
High Standards at the MRC By Eileen Marshall and Margaret Williams, 21st April 2005
Firstly, Simon Burden wrote: "When researchers put together a proposal they are required to define the population they are studying". Indeed so: why, therefore, does this basic requirement not apply to the PACE trials? And why is the MRC content with the confusing lack of definition for entry criteria into these trials for patients with what the MRC itself refers to as "CFS/ME"?
If those involved with the PACE trials adhere (as required) to the Trial Identifier and select their participants by using the Oxford criteria, then, by definition as set out in the Oxford criteria themselves, those with ME will be excluded from the start, and this is unequivocal. If there is no such strict adherence to the entry criteria, then the results will be flawed from the outset and therefore meaningless (and yet more millions of pounds will have been wasted). Either the criteria are adhered to, or the results will be flawed: there is no other scientifically credible interpretation.
How does this accord with the MRC’s apparent requirement for "the high scientific standard required for funding"?
CDC Provides Clarification At Last by Margaret Williams, 26th April 2005
It is noted that the Centres for Disease Control (CDC) Media Relations Office appears to have provided official confirmation that "CFS" (chronic fatigue syndrome) is not the same disorder as myalgic encephalomyelitis (ME) / ICD-classified chronic fatigue syndrome (CFS) --- "CFS" here being synonymous with "ME" as classified in the International Classification of Diseases at ICD-10 G93.3. This clarification has been reported via the US Newswire (see Co-Cure, 26th April 2005).
This confirmation would seem to be an important breakthrough in the confusion that surrounds the heterogeneous label "CFS".
RiME - Research into Myalgic Encephalomyelitis Sample letters from January to June 2002
‘ME is a neurological illness, and is classified as such by the World Health Organisation, A substantial body of biomedical research (mostly carried out in the U.S.) Has demonstrated physical abnormalities in both the Central Nervous System and the Musculoskeletal, Cardiovascular, Immune and Endocrine systems.
A small number of studies have been earned out in the U.K., but in a piecemeal fashion and funded on a shoestring solely by charities and private donations It is utterly unrealistic to expect that small charities can find the sums of money required for serious research.
Despite this, the DOH has funded nothing other than psychological psychiatric research into this illness This is utterly inappropriate, as shown by the facts that despite millions of pounds of backing (mostly via the Linbury Trust), this approach has failed to advance knowledge of the cause and effective treatment of M.E.. On the contrary, it has done nothing other than falsely portray M.E. patients as suffering from a psychiatric disorder. This has resulted in inappropriate and harmful treatment, and denial of basic social security benefits. This has lead to great distress and unnecessary suffering for many patients already struggling under the terrible burden of illness.
This shameful situation should not be allowed to continue. M.E. is not a mental health issue, and it is therefore imperative that research into the biological causes of, and treatment for, M.E. is undertaken, and that psychological / psychiatric research should not be considered, by the MRC.
Dangers of Fad Treatments by Del Kennedy
It is all too common to hear stories of desperate sufferers trying anything, no matter how bizarre or unlikely, in search of something that will make their lives bearable. And there are all too many practitioners ready to peddle nonsense if it makes them a good living.
At best, these 'treatments' do nothing at all. At worst, they can do a great deal of harm. I'm sure you will have recognised by now what I'm talking about : 'physicians' pushing quack 'therapies' like Graded Excercise and Cognitive Behaviour Therapy.
"To impy that the physical illness ME can be successfully treated by 'challenging negative thoughts' is an insult to people like my daughter who have been severely affected by the illness for many years and yet still retain a positive and realistic attitude. My daughter's condition deteriorated to an alarming degree after following a CBT & graded excercise approach."
Pinching's Perception? by Eileen Marshall and Margaret Williams, 20th January 2006
The recently-released Minutes of the UK All Party Parliamentary Group on ME of the meeting held on 16th November 2005 contain a record of the presentation made at that meeting by Professor Tony Pinching, Associate Dean for Cornwall at the Peninsula Medical School and Chair of the NHS CFS/ME Service Investment Steering Group. It is this Steering Group that defined the criteria for the new "CFS" Centres in the UK; it also oversaw the bidding for and the allocation of the £8.5 million of Government funding. Thus, as Chair of the CFS/ME Service Investment Steering Group, a heavy weight of accountability rests on Pinching’s shoulders.
One can but ask yet again why someone in a position of such responsibility as Professor Pinching appears to be intent on wilfully ignoring the large body of international researchers calling for sub-grouping of "CFS" as a matter of urgency.
For the attention of All Members of Parliament - Old and New Margaret Williams 4th May 2005
Tomorrow, on 5th May 2005, the results of the UK General Election will be known: this may lead to either the return or replacement of Members of Parliament, and Parliament will sit on 11th May solely for the swearing-in of new MPs. Whatever the outcome, as soon as Parliament resumes, as many as possible of the ME community are urged to contact their MP and to insist on their seeking and obtaining from the Minister of State for Health acceptable answers to a few straightforward questions:
Why are sufferers of myalgic encephalomyelitis (ME --- also known by the World Health Organisation as chronic fatigue syndrome or CFS) being offered only inappropriate and potentially damaging psychiatric interventions suitable for somatisation disorders when there is no evidence whatever that ME (as distinct from chronic "fatigue") is a psychiatric disorder?
