Times Letters: British intervention in healthcare debate in the US and our NHS

In response to the report “David Cameron turns on MEP Daniel Hannan for anti-NHS tour in America” Times Online, 14 August,  H Patten has a letter published today in the print and online editions:

Times Letters

http://www.timesonline.co.uk/tol/comment/letters/article6798223.ece

The Times
August 17, 2009

‘Untruths’ about NHS system of healthcare
British intervention in the healthcare debate in the US and our NHS

Sir, The quarter of a million sufferers of myalgic encephalomyelitis (ME) in this country, who can access no effective NHS treatment for their physical illness, might agree with Mr Hannan in that they would not wish their NHS “care” on anybody.

ME has been classified as a physical, neurological illness (alongside MS and Parkinson’s) by the World Health Organisation since 1969. Instead of receiving biomedical treatment, ME sufferers are mixed up with sufferers of other fatigue-causing conditions, including mental ones, under the meaningless umbrella term “chronic fatigue syndrome”. In the UK no other neurological illness is treated solely by psychological interventions.

All UK taxpayers’ research and treatment millions have gone to the psychiatric profession that insist, against all scientific evidence, that it is an “abnormal illness belief”. No funding has ever been allotted to developing a diagnostic test. The parliamentary Gibson report recommended that these psychiatrists be investigated for a possible conflict of interest in also working for large insurance companies. This has never been done. Is healthcare here also, in President Obama’s words, “working better for the insurance companies” than for ME sufferers?

H. Patten

Frome, Somerset

ME/CFS: Classification Issues by Margaret Williams, 3 May 2009

http://www.meactionuk.org.uk/ME_CFS_Classification_Issues.htm

ME/CFS: Classification Issues

by Margaret Williams  |  3 May 2009

Deborah Waroff expresses concern (Co-Cure: ACT: 3rd May 2009) about the serious danger to the World Health Organisation classification of ME/CFS as a neurological disorder posed by the Wessely School. She bases her concern on a recent paper in Psychological Medicine co-authored by psychiatrist Professor Peter White which states: “These data also suggest that fatigue syndromes are heterogeneous, and that CFS/ME and PVFS should be considered as separate conditions, with CFS/ME having more in common with IBS than PVFS does. This requires revision of the ICD-10 taxonomy, which classifies PVFS with ME” (emphasis added). In apparent support for their desired removal of ME/CFS (which they refer to as “CFS/ME”) from the neurological section and its reclassification as a somatisation (behavioural) disorder, the authors assert: “A strong relationship between CFS and psychiatric, particularly mood, disorders is a constant finding”

See: Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study in primary care. WT Hamilton, AM Gallagher, JM Thomas and PD White.

http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=5446224 

It should be noted that the lead author, Dr William T Hamilton, was a member of the Guideline Development Group (GDG) which drew up the NICE Guideline on “CFS/ME” (CG53) that was published on 22nd August 2007 and which recommended behavioural modification as the primary – indeed the only –management regime for patients with ME/CFS.

In contravention of NICE’s own taxonomy, the Guideline erroneously lumped together two completely different disorders (ME/CFS and neurasthenia/chronic fatigue). GDG member Dr Fred Nye wrote in the Journal of Infection: “We had been advised to adopt an inclusive approach, but this was challenged by the patient representatives who preferred a narrow case definition. A wide definition risks ‘medicalising’ people who are merely tired”. This quotation from Dr Nye shows that, under the chairmanship of Professor Richard Baker (see below), the GDG intentionally amalgamated numerous states of chronic “fatigue”, leading to a meaningless and worthless Guideline for sufferers of ME/CFS and instead concentrating on people who are merely tired (to use Dr Nye’s words) at the expense of the patients who are seriously ill with a chronic neuroimmune disorder.

The Wessely School’s view (which underpinned the Guideline’s management recommendations) is set out in Wessely’s own paper in The Lancet (Functional somatic syndromes: one or many? Lancet 1999:354:936-939), namely that “CFS has been described as part of a broader condition that includes a range of disorders including fibromyalgia, irritable bowel syndrome etc”, about which Wessely’s Chronic Fatigue Service at King’s College Hospital, London, commented in the Stakeholders’ comments on the draft Guideline that such a view “will be well received by many doctors, since it reflects their views and emphasises ways in which we can increase our knowledge of one ‘syndrome’ ”.

This is the heart of the matter, because what NICE refers to as “CFS/ME” is not one functional somatic syndrome but a conglomeration of numerous states of chronic fatigue into which the distinct neurological disorder ME has been erroneously subsumed by Wessely School psychiatrists upon whose work (acknowledged to be methodologically flawed) the GDG relied so heavily.

There has long been international concern about the Wessely School’s determination to ignore the biomedical science and to categorise ME/CFS as a behavioural disorder, and the increasing influence of the Wessely School on the US Centres for Disease Control (CDC) (ME)CFS research programme seems to have caused international experts to speak out about their concerns.

For example, at the CDC (ME)CFS Stakeholders’ meeting held on 27th April 2009 in Atlanta, Dr Staci Stevens advised the CDC that: “Without defining subsets clearly, it will preclude you from meeting your goals. You won’t understand aetiology and you won’t understand clinical management”. Dr Lily Chu also emphasised the need for subgrouping: “Selecting study subjects by using study criteria that have been diluted, such that (they) no longer resemble the illness, will generate erroneous and confusing results”.

The need not to combine heterogeneous populations (as the NICE Guideline does) was set out by world-renowned immunologists Professors Nancy Klimas and Mary Ann Fletcher from the University of Miami in their exceptional (fully referenced) testimony dated 13th September 2008 for the Court in support of the Judicial Review. They said (amongst five pages of evidence): “The overall flavour of the Guideline is to lump together all patients with ‘medically unexplained fatigue’, from relatively mild to profoundly disabling illness and to treat all patients with a standard approach of gradual reconditioning and cognitive behavioural modification. By lumping such a heterogeneous mix of patients, and setting forth very limited diagnostic and treatment recommendations, patients with CFS or ME are left with very limited options, and little hope”. Professors Klimas and Fletcher continued: “In our opinion, combining all states of unexplained fatigue narrowly focuses upon a single, poorly defined symptom (fatigue) and promotes misunderstanding of CFS”. The Statement continued: “(The Guideline) proscribes immunological and other biologic testing on patients with CFS in the UK – despite the evidence in the world’s medical literature that such testing produces most of the biomedical evidence of serious pathology in these patients.

“Equally unfortunate is the GDG’s recommendation for behavioural modification as the single management approach for all ‘medically unexplained fatigue’. This month we participated in the International Conference on Fatigue Science in Okinawa, Japan. Dr Peter White of the UK presented his work using behavioural modification and graded exercise. He reported a recovery rate of about 25%, a figure much higher than seen in US studies in CFS, and even if possible, simply not hopeful enough to the 75% who fail to recover. The lumping of a heterogeneous population with no biological testing funded hampered this study”. The Statement continued: “In summary, we support your challenge to the GDG Guideline. We hope any future revision acknowledges the importance of immune, autonomic and neuroendocrine influences in this illness”. The Statement concluded: “We would also ask that the Court consider the far-reaching impact of a Guideline that fails to look forward or even at the present when describing the literature and the causes of this disabling illness”.

Along with approximately 60% of the Claimants’ evidence, this testimony was entirely disregarded at the High Court Hearing.

It is clear from Professor Baker’s Witness Statement (see below) and from Dr Nye’s letter in the Journal of Infection that the GDG’s intention from the outset was that the Guideline should cover a whole range of patients suffering from “medically unexplained fatigue”, which is classified in the ICD-10 at F48.0 under Mental and Behavioural Disorders, a section from which ME is expressly excluded by the WHO, yet the Guideline specifically claims to include ME. The GDG thus failed in its remit to produce an aid to diagnosis for ME/CFS. As Chairman, Professor Baker must bear responsibility for this failure.

Moreover, under the chairmanship of Professor Baker, the GDG specifically refused to accept the WHO classification of ME/CFS as a neurological disorder.

On 24th March 2003 Andre L’Hours from the WHO confirmed that it is mandatory for all member states (which include the UK) to use the ICD-10 codes, and NICE’s own Communications Progress Report 8 of September 2002 also stipulates that it is mandatory for NICE to use the ICD-10 codes. This evidence was provided for the GDG and the High Court but was unheeded.

The alleged reason for the GDG’s refusal to accept the ICD-10 classification was proffered in the First Witness Statement (he provided two Witness Statements) of Professor Richard Baker on behalf of NICE, whose First Witness Statement was discussed at length in Court (whereby it entered the public domain and can therefore be quoted publicly):

“The claimants argue that the GDG should have recognised the classification given in ICD-10, which lists ME under Section G ‘Diseases of the Nervous System’. The GDG acknowledged this classification but considered it best not to adopt it”. Quoting from page 68 of the Full Guideline, Professor Baker’s First Witness Statement continued: “ ‘The World Health Organisation (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the GDG felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness and risked restricting research into the causes, mechanisms and future treatments for CFS/ME’. As indicated in the extract above, there were two reasons why the GDG did not accept the ICD-10 classification. Firstly, there was not enough agreement that it could be said with sufficient certainty that CFS/ME was a neurological condition. Secondly, given the uncertainty surrounding how the condition is caused and why it progresses in the way that it does, the GDG did not want the Guideline to have the unintended consequence of steering future research down a particular course. The concern was that had the Guideline adopted the ICD-10 classification, that would have made it harder to obtain funding and approval for research into non-neurological factors causing and perpetuating CFS/ME (and) such a consequence would have been highly undesirable” (emphasis added).

Professor Baker’s First Witness Statement continued: “In addition to code G93.3 for ME, ICD-10 includes a code F48 – neurasthenia – which describes symptoms typical of CFS/ME and is referred to elsewhere in ICD-10 as covering ‘fatigue syndrome’. Furthermore, the classification G93.3 refers only to ME, and not to CFS”.

Thus Professor Baker confirmed that the management recommendations in the Guideline are based on the feelings of some members of the GDG, thereby ignoring the WHO taxonomy and the concerns of those GDG members who believed that the ICD-10 classification should have been adopted in the Guideline, as well as ignoring the pressing needs of patients with ME/CFS to receive a correct diagnosis and appropriate support.

Given that the WHO has classified ME as a neurological disorder for 40 years, there is abundant international agreement that it can be said with certainty that ME is a neurological condition. There may not have been sufficient agreement amongst GDG members that ME/CFS is a neurological condition, but there is absolute certainty that ME/CFS is a WHO classified neurological disorder.

The NICE Guideline claims to represent the best available evidence. The best available evidence is that since 1969, ME has been an internationally classified neurological disorder (WHO ICD-10: G93.3). The best available evidence is that since 2003, ME has been classified as a neurological disorder in the UK Read Codes used by GPs (F286), and that ME is included in the UK National Service Framework for long-term neurological conditions. The best available evidence is that the UK Department of Health accepts that ME is a neurological disorder, and that the UK Chief Medical Officer accepts that ME is a neurological disorder with long-term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease. The best available evidence is that there are now over 5,000 peer-reviewed scientific papers demonstrating that ME/CFS is not a behavioural disorder.

As the UK is a member of the WHO World Health Assembly, the GDG does not have the autonomy to reject the formal WHO classification of ME/CFS as a neurological disorder and, as chairman, Professor Baker could have been expected to direct his GDG appropriately. It seems that, influenced by the Wessely School, he failed to do so.

By the wording of that paragraph in his First Witness Statement (ie. “non-neurological factors causing and perpetuating CFS/ME” ), Professor Baker seems to imply that he knows that non-neurological factors (ie. behavioural factors) cause and perpetuate “CFS/ME”, but there is no evidence whatever to substantiate his professed knowledge on this issue. There is however, an extensive Wessely School literature asserting that they do, which is based not on scientific evidence but on Wessely’s own somatisation hypothesis (adopted by the GDG and whose previously published papers already supported such a notion) that has been stringently challenged by international ME/CFS researchers in the peer-reviewed literature.

NICE was even admonished by the House of Commons Health Select Committee which, in its First Report of Session 2007-08 (Volume 1: 29), stipulated: “NICE should not recommend interventions when the evidence is weak”.

NICE itself conceded that in the case of “CFS/ME”, the evidence was weak. By letter dated 26th January 2006, a NICE Communications Executive (Sarita Tamber) confirmed: “With regard to the CFS/ME guideline, because of the lack of evidence it was decided to use formal consensus methods with the GDG. As you are aware, NICE guidelines are based on research evidence but NICE is aware of the lack of evidence on CFS/ME”.

The revelation from Professor Baker seems clear enough: had the GDG adopted the ICD-10 classification, it would have made it harder to obtain funding for research into “non-neurological factors” (ie. “behavioural factors”). In other words, the Wessely School psychiatric gravy-train would have hit the buffers, a gravy-train that has been funded by the State, including the MRC alone to the tune of £3 million since 2002, which is approximately 91% of the MRC’s total grant spent on “CFS/ME”. It seems that the dominant Wessely School GDG members clearly wanted to ensure continued funding for their studies on “behavioural modification” in CFS/ME.

Underpinning it all is the publicly stated intention of the Wessely School that the next revision of the Diagnostic and Statistical Manual (DSM-V) should include “CFS/ME” as a somatoform disorder (a category that they wish to re-configure).

If NICE had accepted the disorder as neurological, it would have thwarted the Wessely School’s objective of eradicating ME and of capturing “CFS/ME” – with their stated intention of eventually dropping the “ME” — as a psychiatric disorder (with advantageous implications for their paymasters in the medical and permanent health insurance industry), so it seems that their supporters on the GDG (including Dr Hamilton, who is Chief Medical Officer of two major medical insurance companies, the Exeter Friendly Society and the Liverpool Victoria and who also is employed by Friends Provident, a fact that he now admits he failed to declare to NICE) did not allow it to happen.

Given that it was as long ago as 28th June 2001 that Andre L’Hours confirmed that the WHO has no plans to remove ME/PVFS/CFS from the section on Disorders of the Brain and transfer it to a psychiatric classification (confirmation of which was again supplied — in writing — by Dr Robert Jakob of the WHO on 5th February 2009 in relation to the forthcoming ICD-11), it seems sinister that the Wessely School continues unrestrained by any vestige of accountability or professional censure in its determination to disregard and over-rule the WHO to the detriment of many thousands of desperately sick patients. If this were to occur with patients suffering from any other organic disorder, be it cancer, multiple sclerosis, lupus or renal failure, a clinician who resolutely refused to accept the abundant evidence of such a disorder and who simply insisted that the patient change their thought processes might face disciplinary proceedings. It is incomprehensible that no such strictures are brought upon the miscreant Wessely School and upon those clinicians who support them.

The Gibson Report of November 2006 called for an inquiry by the appropriate Standards body into the blatant conflicts of interest of certain members of the Wessely School but, like everything else to do with ME/CFS, this call has gone unheeded.

Quite apart from the issue of correct classification, the evidence continues to mount that ME/CFS is essentially a neurological disorder.

For example, a review of the neurological components of ME/CFS is clear. Although this review was published in 2008 (i.e. after the Guideline was published in August 2007), only four of the 47 references cited were not available to the GDG:

“Additional evidence of an underlying neurological disorder requires appropriate neurological evaluation. Available neuroimaging data not only show differences in morphology between patients and controls, but also indicate the brain’s response to mental fatigue. Evidence of abnormal perfusion in the brain has led to research on brain metabolism (which) found a significant hypometabolism in the right mediofrontal cortex and brainstem of patients. In summary, an increasing amount of evidence is becoming available to elucidate the close relationship between (ME/CFS) and the CNS. The focal point of (ME)CFS research should be transferred to the CNS and exploration of the neuromechanism of (ME)CFS”. (“Chronic Fatigue Syndrome and the Central Nervous System”: R Chen et al; Journal of International Medical Research 2008:36:867-874).

Given the significant amount of evidence that ME/CFS is a neuroimmune disorder, and given the fact that NICE is funded by — and responsible to — the Department of Health, it is irrational for NICE to refuse to accept the WHO international classification ICD-10 G93.3 when the Department of Health accepts it. This refusal may indicate the stranglehold exerted by the Wessely School and the medical and permanent health insurance industry upon both NICE and the MRC, of which there is abundant evidence not included here.

In their testimony for the Judicial Review, Professors Klimas and Fletcher pointed out that: “The Guideline affects not only the UK but is widely quoted throughout the EU, and has influenced health care policy in Norway, Sweden, and the Netherlands”.

At the CDC CFS Stakeholders’ meeting on 27th April 2009 in Atlanta, Dr William Reeves (who is on record as saying in his Introduction to the meeting that the CDC has had four CFS programme reviews in the last four years, the most recent being in November last year) said: “Dr Peter White participated. Dr Peter White is a representative of, I think, the only country and Ministry of Health in the world that has developed a comprehensive programme for diagnosing, evaluating, and treating CFS. There may be many comments as to whether it is the best, but it is a national health service, which takes this very seriously. And (they) have tried to implement on a national level something” (with grateful acknowledgement to http://www.cfidsreport.com ).

It is Peter White who is striving to get ME removed from the neurological classification of the ICD and reclassified as a behavioural disorder and who lumps together undefined states of “medically unexplained chronic fatigue” that he believes should be uniformly managed by cognitive restructuring that is intended to convince sufferers that they are not sick, merely that they are just not active enough because of their aberrant illness beliefs.

At the same CDC CFS Stakeholders’ meeting on 27th April 2009, Professor Klimas was clear: she urged the CDC to consider “the role of other chronic persistent re-infection in this disease. You just can’t say that you are not going to look at infectious disease. If there is this much immune activation, there is either a pathogen or an autoimmune disorder” .

The Wessely School (including Peter White), NICE and the UK Courts are not listening.

It seems that, by their consistent denial of the documented pathology and by means of their so-called “cognitive re-structuring techniques”, the Wessely School is assisting the State to undermine sick people’s rational thoughts, feelings and legitimate beliefs about their illness for political, social and economic reasons.

Deborah Waroff is right to be concerned. She is not alone.

Margaret Williams

3 April 2009

Independent: What’s wrong with you? It depends where you live (Wessely)

Update: Letter below was published in the print edition on 30 April.

The ME Association has made the following response which includes this description of “Pacing” – a description which sounds more like GET (Graded Exercise Therapy) or APT (Adaptive Pacing Therapy) to me:

“The key to recovery in ME/CFS is careful pacing of activities – a process involving small but flexible increases in activity that take account of the person’s limitations.”
 

http://www.meassociation.org.uk/content/view/852/161/

ME Association responds to The Independent

The ME Association has responded to an article by Jeremy Laurence in which he interviewed Professor Simon Wessely, which appeared yesterday (Monday, April 27) on the health pages of The Independent newspaper.

INTENDED FOR PUBLICATION

RE: WHAT’S WRONG WITH YOU? IT DEPENDS ON WHERE YOU LIVE

Sir

Whilst agreeing that many French doctors still refuse to accept that ME/CFS exists as a distinct clinical entity, this situation cannot be used to conclude that the illness is not present in France.

A proper epidemiological study (1), which investigated the prevalence of persistent fatigue in France, found that this is a significant and common presenting complaint in primary care. Here at The ME Association we are regularly contacted by people in France who are desperately seeking help with regard to both diagnosis and management – some of whom appear to be receiving inaccurate explanations for their persisting ill health.

The simple fact is that if people with ME/CFS do too much and exceed their limitations – as may be advised by doctors who believe the problem lies in abnormal illness beliefs and behaviour. – they invariably feel worse as a result. The key to recovery in ME/CFS is careful pacing of activities – a process involving small but flexible increases in activity that take account of the person’s limitations. All of which is consistent with the neurological abnormalities that has led the World Health Organisation to officially classify ME as a neurological disorder (in section G93.3 in ICD10)..

Dr Charles Shepherd
Hon Medical Adviser, ME Association

7 Apollo Office Court
Radclive Road
Gawcott
Buckinghamshire MK18 4DF

Web: www.meassociation.org.uk

Reference

The epidemiology of fatigue and depression: A French primary care study. Psychological Medicine. 25 (5) 895 – 906, September 1995.

———————————-

Most likely written up from the same press handout as the Wessely “interview”, New Scientist, 13 March issue. 

From this morning’s Independent:

http://tinyurl.com/independentwessely

Tuesday 27 April 2009

What’s wrong with you? It depends where you live

Jeremy Laurance looks at how different countries treat the same symptoms

‘Simon Wessely, professor of psychiatry at Kings College, London, who has studied cultural trends in illness, says: “People will always seek explanations when they feel under the weather or not quite right. Much of it depends on what is currently hot in medicine. Each age and each culture has its own answers. Doctors use many different labels to describe patients with unexplained symptoms – somatisation, burn-out, chronic fatigue syndrome, multiple chemical sensitivity, subclinical depression, post traumatic stress disorder, low blood pressure, spasmophilia – despite no evidence that any of these are distinct or separate entities. Our belief is that most of these labels refer to similar clinical problems.”‘

Read full article in the Independent here

———————-

You can send letters to the Editor for the print edition via email (full contact details will be required) to: letters@independent.co.uk  or leave a comment on the article. I’ve left the following comments, today:

Interests
Tuesday, 28 April 2009 at 07:26 am (UTC)

Does Professor Simon Wessely function as an external advisor to the American Psychiatric Association (APA) DSM Revision Process, other than his participation in the APA/NHI/WHO funded DSM-V Beijing 2006 diagnosis-related research planning symposium on “Somatic Presentations of Mental Disorders”?

and

Re: Mistreated by PSCYHOLOGY [sic]
Tuesday, 28 April 2009 at 01:52 pm (UTC)

This article bears such striking similarities to the “interview” published in New Scientist (Mind over Body? 13 March) that one suspects it has been written up from the same press handout.

And yes, once again, Professor Wessely disregards WHO ICD-10 taxonomy, using the terms “chronic fatigue”, “ME” and “Chronic Fatigue Syndrome (CFS)”, interchangeably, as though all three were indexed in the same Chapter of ICD-10, which they are not.

Only recently, the WHO Collaborating Centre, Institute of Psychiatry, was obliged to correct the website for the WHO Guide to Mental and Neurological Health in Primary Care where they had incorrectly placed “chronic fatigue” at G93.3. This website has now been amended to read “chronic fatigue G48.0” – which is still incorrect; it should read F48.0 (Chapter V).

It has sat like this for weeks. Would someone from the WHO Collaborating Centre or the Institute of Psychiatry or perhaps, Professor Wessely, himself, if he is reading these comments, please attend to this error?

Have a look at it here:

http://www.mentalneurologicalprimarycare.org/content_show.asp?c=16&fid=1252&fc=011065

———————————-

For the New Scientist “interview” with Professor Simon Wessely go to:

http://www.newscientist.com/article/mg20126997.000-mind-over-body.html

There have now been 564 responses in the Comments to this Wessely “interview”.  Two letters were printed in the magazine a couple of weeks after the article appeared – one by Dr Charles Shepherd, the other by Tom Kindlon; a further two letters have appeared in the print edition.  Prof Wessely has responded once, via the Comment facility, but author of the article, journalist Claire Wilson, has made no response.

Following the publication of today’s article in the Independent, I have added the following comments to the New Scientist:

Wessely In The Independent
Tue Apr 28 08:10:00 BST 2009 by Suzy Chapman

Very similar article in the Independent, today, and likely written up from the same press handout as this New Scientist “interview” with Prof Wessely.

http://tinyurl.com/independentwessely

Can anyone confirm whether Prof Simon Wessely functions as an external advisor to the American Psychiatric Association (APA) DSM Revision Process, other than his participation in the APA/NHI/WHO funded DSM-V Beijing 2006 diagnosis-related research planning symposium on “Somatic Presentations of Mental Disorders”?

————————-

It’s All In The Definition
Tue Apr 28 09:24:42 BST 2009 by Suzy Chapman

Note that in the Independent article, Prof Wessely disregards WHO ICD classifications and again uses the terms “chronic fatigue” and “ME (myalgic encephalitis)” [sic] and “Chronic Fatigue Syndrome (CFS)”, interchangeably.

In the Independent article he comments on the term “Neurasthenia” – which he says is a diagnosis not used in Britain for a century.

Prof Wessely has a new co-authored paper published this month around the theme of “Neurasthenia”:

The relationship between fatigue and psychiatric disorders: Evidence for the concept of neurasthenia. Journal of Psychosomatics. Samuel B. Harvey, Simon Wessely, Diana Kuh, Matthew Hotopf

Abstract:

http://www.ncbi.nlm.nih.gov/pubmed/19379961

The Editor of the Journal of Psychosomatics is Francis Creed. Creed and Michael Sharpe are both members of the APA DSM-V “Somatic Distress Disorders” Work Group, aka the DSM-V “Somatic Symptom Disorders” Work Group.

Both Sharpe and Creed were members of the CISSD Project, administered by Action for ME. Dr Richard Sykes, who was the Co-ordinator of the CISSD Project, is now working on the “MUPSS Project” in association with the WHO Collaborating Centre, Institute of Psychiatry.

Action for M.E. statement: High Court challenge against NICE is dismissed

“Action for M.E., the country’s biggest M.E. charity, supports the guideline.”

Ed: Action for M.E. has around 9,000 members.  Many of the estimated 250,000 ME sufferers in the UK lost confidence in Action for M.E. years ago and have terminated their memberships; this is reflected in falling membership figures. They have become disillusioned with the way in which Action for M.E. operates, with its lack of transparency and are critical of the charity’s relationship with government and with bodies such as NICE and the MRC. They do not believe that Action for M.E. properly represents their needs as sufferers of a disabling and debilitating illness. 

Membership of this patient organisation carries with it no voting rights and therefore no ability to participate in trustee election processes; no ability to put oneself forward for election as a trustee through a ballot of the membership at an AGM, or to nominate others to stand for election in AGM elections; no rights to attend AGMs or EGMs held by Action for M.E. and no rights to make proposals at AGMs or to call for an EGM. Although Action for M.E. issues occasional invitations for expressions of interest from prospective trustees, via its magazine, trustees are selected by the existing trustees, not via a ballot of the membership through a democratic election process.

So although Action for M.E. claims on its website that “…our direction and policies are informed by the voices of people with M.E.” it is only those voices to which Action for M.E. chooses to listen, since the membership, itself, plays no part whatsoever in the selection of its trustees who “…guide, advise and support the Chief Executive to implement the charity’s strategy”.

When Action for M.E.’s  members become disillusioned with the organisation’s policies, with its lack of transparency and with its general view of ME as a biopsychosocial condition as opposed to a physical neurological disease, as defined by the World Health Organisation and that it continually fails to represent their best interests, they are disenfranchised from influencing its governance, its policies and its direction because they have no vote. All they can do is vote with their feet.

The MS Society is the UK’s largest charity for people affected by multiple sclerosis (MS) – an estimated 85,000 people in the UK.  The MS Society has over 46,000 members [1].  Action for M.E. should be asking itself why?

Action for M.E. did not consult its membership over its position on the NICE High Court challenge. 

For further information see the ONE CLICK AfME Dossier: The ONE CLICK AfME Dossier

[1] Source: MS Society  http://www.mssociety.org.uk/

——————————-

Action for M.E.

http://www.afme.org.uk/news.asp?newsid=493

News

High Court challenge against NICE is dismissed | 13 March 2009

Today, the judge ruled in favour of the National Institute for Health and Clinical Excellence (NICE) regarding its guideline on the diagnosis and management of M.E. (Myalgic Encephalomyelitis/ Encephalopathy) and chronic fatigue syndrome.

Action for M.E., the country’s biggest M.E. charity, supports the guideline.

The guideline was challenged in a judicial review at the Royal Courts of Justice, The Strand, London, 11-12 February 2009.

The case generated considerable interest among the 250,000 people in the UK who have M.E., as some patients hoped the legal proceedings would lead to the withdrawal of the guideline.

CEO Sir Peter Spencer says:

“We understand and respect the arguments brought by Kevin Short, from Norfolk, and Douglas Fraser, from London, who have M.E., but overall we think the NICE guideline represents an opportunity to drive forward the improvement of services for people with M.E. most of whom obtain their treatment from the NHS.

“Yes, we are concerned by the emphasis on graded exercise therapy (GET) and cognitive behaviour therapy (CBT). Our latest health survey showed 34% of patients who had received GET in the past three years felt worse after treatment. The randomised controlled trials which are cited by NICE are given too much emphasis in view of their limitations.

“I would therefore refute today’s NICE statement by Professor Littlejohns that the NICE guideline is “the gold standard for best practice in managing CFS/M.E.”.

“At present there is no “gold standard”. That is why so many patients are angry and upset. That is why we continue to campaign vigorously for more scientific research into this illness.

“Nevertheless we believe that there are other aspects of the NICE guideline which could bring considerable benefits, as long as there is adequate funding for its implementation, especially in terms of training health care professionals to understand M.E./CFS better.

“We are all aiming to achieve the same end result which is better treatment for all M.E. patients. However the route which Action for M.E. will take to bring this about will be to engage with the normal NICE review process.

“The one thing that patients, doctors and NICE all agree is that far more scientific research is needed into the disease mechanisms of M.E.”

Action for M.E. works with the NHS as a critical partner, lobbying for more M.E. specialists and improved quality of treatment for M.E. patients. The charity also offers telephone support and a range of helpful publications.

Further information to follow as more details emerge.

Judicial review website by people opposed to the NICE guidelines http://www.nicemecourt.co.uk/index.html

NICE statement about High Court ruling

http://www.nice.org.uk/media/001/6F/CFSMEJRJudgementStatement130309.pdf

CISSD Project: Commentaries from Stephen Ralph; Connie Nelson

A reminder of the make up of the Conceptual Issues in Somatoform and Similar Disorders Work-Group (CISSD Project):

International Chair: Professor Kurt Kroenke, Indiana University School of Medicine and Regenstrief Institute, Indianapolis;
UK Chair: Professor Michael Sharpe*, Department of Psychiatry, University of Edinburgh;
Principal Collaborator: Professor Rachel Jenkins, WHO Collaborating Centre;
Project Co-ordinator: Dr Richard Sykes, WHO Collaborating Centre.
Project Advisor: John Bradfield  [Source: WHO  ICD Update and Revision Platform ]

The Conceptual Issues in Somatoform and Similar Disorders Work Group included, in addition to the above: Natalie Banner, Arthur Barsky*, John Bradfield, Richard Brown, Frankie Campling, Francis Creed*, Veronique de Gucht, Charles Engel, Javier Escobar**, Per Fink, Peter Henningsen, Wolfgang Hiller, Kari Ann Leiknes, James Levenson*, Bernd Löwe, Richard Mayou, Winfried Rief, Kathryn Rost, Robert C. Smith, Mark Sullivan, Michael Trimble. [Source: http://psy.psychiatryonline.org/cgi/reprint/48/4/277 ]

*All four are APA DSM-V Revision Process Somatic Distress Disorders Work Group members
**APA DSM-V Task Force member

————————–

Commentary from Stephen Ralph, including a commentary from Margaret Williams, first published in June 2004, followed by commentary from Connie Nelson.  (Although this makes for a lengthy posting, I am combining all three in one post for ease of reference.)

From Stephen Ralph, ME Action UK

28 February 2008

The “harmonisation” of “CFS/ME” in DSM V and ICD-11 and why this must fail

http://www.meactionuk.org.uk/Why_the_CISSD_Project_MUST_Fail.html  

How many times have we seen a psychiatrist or a psychiatric study describe “CFS/ME” as a “poorly understood illness“?

When torn up, these studies would provide enough confetti to supply the planet for a generation.

Is it the case that any poorly understood illness must now be classified as a psychiatric disorder?

If we were to believe these studies then the answer would be “Yes” because somewhere along the line there has been a decision to accept that new as yet untreatable complex biomedical diseases simply do not evolve and cannot in future arrive.

If Wessely, Sharpe, White, Sykes and even Sir Peter Spencer want “CFS/ME” in the mental health DSM V and in the forthcoming ICD-11 under the same mental health classifications then they must ensure that they have solid irrefutable proof that putting “CFS/ME” under mental health codes is without any doubt the acceptable thing to do not just for themselves but for the whole of medicine of which they are just a small often criticised faction.

The fact is that Wessely and his somatoform colleagues do not (even now after many years of incestuously “peer reviewed” studies) have this irrefutable proof especially when there are so many scientists carrying out significant physiological studies globally – who find indicative evidence – diametrically opposed to the claims of functional psychiatrists.

If the whole nosological picture was observed objectively and without conflicting interests then the whole field is still very much wide open.

So I have a feeling that when the final proofing meeting is held in Geneva, the World Health Organisation will in the end not bow to the somatoform lobbyists because of their total lack of robust conclusive scientific proof.

If it isn’t proven beyond doubt that “poorly understood illnesses” are in fact mental illnesses then the WHO should simply be bound to say “No” to the proposals to reclassify “CFS/ME” as physically manifested mental health disorders.

Otherwise, if they did then we would be left in a situation whereby ANY emerging and evolving pathology that could take 20 years to identify, will be treated in the future by default as a mental illness.

Patients who could end up with a new and as yet non-existent 21st Century equivalent of HIV/AIDS or Multiple Sclerosis would find themselves being given a knee jerk functional somatoform diagnosis of mental illness many years before being correctly diagnosed by hard biomedical research.

Patients will not find any use for CBT and GET because such interventions do nothing for the complex “invisible” underlying pathology that hard science has yet to pin down just as is the case with Myalgic Encephalomyelitis and other diseases such as Behet’s disease and Lyme Disease…

These people are now and will be victims of a medical misdiagnosis. How do they get their years of factitious medical history deleted?

How do they get there many years of lost life back? And when these people have lived with the label of mental illness and have lost all their friends, their husbands or wives and their children; how do they go about getting them back?

And if people are officially shunted into a functional mental health diagnosis then biomedical medical research to break them free will become almost impossible to fund because State funding will dry up. There will be an assumption that biomedical research is not needed because patients are all just mentally ill and all they will need is CBT, GET and antidepressants.

The end result will be hundreds of thousands of lifetimes of suffering for patients on lucrative gravy trains of CBT and GET and lucrative careers for the Somatoform Industry that is trying so hard to take off with Action for ME at its very heart.

In the Royal Courts of Justice on the 11th and 12th of February, Mr Bear the barrister for NICE claimed that there is no evidence that the Insurance Industry has any interest in “CFS/ME” yet there is an abundance of evidence.

And to give a small demonstration, Action for ME – not long after the Judicial Review was over – announced a conference in April…

CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference

AYME and Action for ME in collaboration with the CCRNC

Milton Keynes 23rd-24th April 2009

This is the second national conference for specialist services and health professionals working with people with Chronic Fatigue Syndrome/ME.

Thursday: Keynote Speaker Professor Mansel Aylward, Director of UNUM Centre for Psychosocial and Disability Research

(CPDR), University of Cardiff

Pathways to work (exact title tbc)

The conference dinner will be held on the Thursday night in Jurys Hotel.

Further details from this website: Chronic Fatigue Syndrome / ME Service at St Bartholomew’s Hospital. http://www.bartscfsme.org/index.html  

 

As you can see, the insurance company UNUM Provident is yet again at the heart of the agenda – the vehicle being driven by Action for ME linked nicely into the Pathways to Work scheme promoted by our UK Government.

Of course the Insurance Industry are laughing all the way to their offshore banks because there will be a greatly enhanced ability for any insurer to decline policy claims when a victim or a customer gets labelled as suffering from a functional mental illness that a bit of CBT will sort out – enough for them to return to work for a few months before those victims end up losing their jobs.

This is why this whole CISSD project http://tinyurl.com/elephantpartnine  [Ed: see previous post] whose funding over 3 years has been administered (and because of this – fully supported) by Action for ME – a project to petition the WHO to “harmonise” a somatoform mental health classification of *CFS/ME* in the DSM V and in the ICD-11 MUST fail.

We all have the ability to lobby the World Health Organisation ourselves and this is exactly what we need to do.

And whilst I am here, can somebody ask why Richard Sykes, formerly of Westcare/Action for ME and now the force behind the Action for ME backed CISSD (mental health reclassification) Project has stated as a reason for change that Chronic Fatigue Syndrome has not yet been classified in the World Health Organisation ICD-10.

As Mr Sykes should know very well, Chronic Fatigue Syndrome has always been classified in the International ICD-10 – under G93.3 along with Benign Myalgic Encephalomyelitis and Post Viral Fatigue Syndrome.

http://www.meactionuk.org.uk/G93-3-ICD-10.jpg  

http://www.meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg  

There are literally hundreds and thousands of concerned people out here who want answers.

Meanwhile Action for ME remains tellingly and culpably silent.

Thank you.

Stephen Ralph. DCR(D) Retired.

http://www.meactionuk.org.uk  

————————–

From Stephen Ralph, ME Action UK

28 February 2008

The 2nd attempt to reclassify CFS/ME

Back in 2001 an “independent” WHO Collaborating Centre in London tried and failed to unofficially change the classification of CFS and ME to F48.0

That attempt failed when Connie Nelson with others lobbied various individuals and the World Health Organisation.

In short, the WHO in Geneva confirmed the correct classifications of CFS, ME and PVFS and quite rightly stated that all three were coded under the neurological diseases code of G93.3.

It was also officially stated by the head of the WHO in Geneva that these conditions could not be dual classified.

This first attempt by an unofficial group of “interested” individuals using World Health Organisation logos and banners on an unofficial website were thwarted.

Those concerned were forced to modify that website and eventually take it offline to be replaced by another website that included neurological disorders.

Here is the original letter from Connie to the Chief Medical Officer from 2001:

Letter from Connie Nelson to the Chief Medical Officer Professor Sir Liam Donaldson:

“Towards the end of August 2001 I inadvertently stumbled across a website hosting a “GUIDE to Mental Health in Primary Care” developed by the WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College, London.”……….

……….”Realising neither ME nor CFS are classified as mental health disorders, with ME being classified in the ICD-10 under G93.3 (neurological) and Chronic Fatigue Syndrome being index linked to the same, myself and others contacted the Collaborating Centre and the WHO Headquarters in Geneva to voice our concerns.”

View here:  26th October 2001  http://www.meactionuk.org.uk/cmoletter.htm

When challenged, Jo Paton of the original WHO Collaborating Centre wrote to Connie Nelson and the letter Connie received can be read here…   http://www.meactionuk.org.uk/whomisc.htm

My view is that after this initial failure, those concerned decided to work on a bigger plan – a more organised plan to not only change the codings in ICD-11 but also to get CFS, ME and PVFS coded as mental illnesses in the DSM V.

This time they had the help of Action for ME – a silent partner but the vehicle through which all the money flowed.

Thus the “CISSD Somatisation Project” was formed.

Led by Richard Sykes who used to work for AfME/Westcare, the plan has been exactly the same.

Get together a WHO Collaborating Group but this time make the group bigger – more letters after names – more force and assumed credibility but this time keep it all underground with no website.

Without a website or any advertising by Action for ME who controlled the cash flow, everything has been kept difficult to find.

In a paper from December of 2007 the following can be seen:

Somatoform disorders and recent diagnostic controversies, Kroenke K, Psychiatr Clin North Am, 01-DEC-2007; 30(4): 593-619

“Although the CISSD is an ad hoc group that includes many international experts on somatoform disorders, it was neither appointed nor sanctioned by the APA or WHO, the organizations authorized to approve revisions of DSM and ICD, respectively…”

This time around, whilst AfME has organised the funding, it made no mention of its involvement, aside from having to mention such in its accounts – forced to reveal this project through accounting law.

This time around a far larger group of interested individuals have been working hard to get this reclassification sorted out more forcefully.

Yet again this WHO Collaborating Group do not appear to be sanctioned by the World Health Organisation themselves but are in fact an “independent” lobby group doing the very same thing i.e. attempting to get the classifications of CFS, ME and PVFS changed so that they can be listed as mental health disorders in both the DSM V and ICD-11.

I am sure I read somewhere that when asked about the codings of ME, CFS and PVFS, Wessely School psychiatrists used to dismiss the importance of classification because classifications only really mattered for statistical purposes.

It would seem that this is a very long way from the truth.

The codings matter a great deal to those who have been running this 2nd underground campaign backed by Action for ME.

This article below by Margaret Williams explains that going back to 2003 after the bungling of the first campaign, the second campaign that we are finding out about now was very much being put together.

For me – I find It quite chilling that Action for ME are effectively condoning and backing an underground effort to have all their members and the rest of the ME community labelled as being functionally mentally ill.

The fact that in their accounts AfME explain that “if accepted by the World Health Organisation, would be of direct benefit to people with ME”; Action for ME has no explanation and none of their members have ever been given a detailed explanation of exactly how their members or everyone else in the UK affected would benefit from being given a functional mental illness label.

Stephen Ralph. DCR(D) Retired.

http://www.meactionuk.org.uk  

http://www.meactionuk.org.uk/sinisterscience.htm

SINISTER SCIENCE?

Margaret Williams

First published 5 June 2004

On 3rd June 2004 Christine Hunter from Australia, whose daughter Alison died of severe ME aged just 19, was moved to ask where is the response of the worldwide ME community to the CDC International CFS Study Group’s proposed refinement of the 1994 CFS criteria (published on 31st December 2003).

The CDC Study Group relies heavily on the work of those who support the views of UK psychiatrist Simon Wessely and Wessely is listed as a member of the International Study Group that produced the 1994 CDC criteria. The UK representative is currently listed as Anthony Cleare, who is one of the psychiatric lobby that withdrew in pique and publicity from the UK Chief Medical Officer’s Working Group before publication of the Report, apparently because they did not succeed in their obsession to get “CFS/ME” unequivocally defined in that Report as a psychiatric disorder. Cleare has often co-authored papers on “CFS” with Wessely (a self-proclaimed expert on “CFS/ME” and a Government adviser internationally known for his well-published personal belief that ME does not exist other than as an “aberrant belief” and that “CFS/ME” is a behavioural disorder that is amenable to his own brand of psychotherapy).

Chris Hunter drew renewed attention to the fact that the CDC International Study Group recommends reliance upon the SPHERE mental health instrument for determining the new research case definition of “CFS” and pointed out that the SPHERE mental health instrument specifically encapsulates dimensions of neurasthenia and Somatisation.

One would have anticipated a world-wide response that required a credible explanation as to why such an instrument has any place in deliberations about the WHO ICD-classified neurological disorder ME, but none seems to have materialised, and the major ME charities have been notably silent on this important issue.

Certainly, those clinicians and researchers who support the organic nature of ME are not likely to put their head above the parapet because if they do, it is likely that they would be instantly targeted and vilified by the Mental Health Movement and its powerful global sponsors.

It seems that the Mental Health Movement is not to be deflected by the evidence of mere medical science from its crusade of establishing psychiatry as underpinning not only service provision for those with ME but also the whole of medicine (and of its sibling, the health insurance industry).

Given its supporters’ stated reliance on “evidence-based medicine”, it is curious that the Movement shows such disregard and contempt for the evidence that ME is not a psychiatric disorder, for example, the evidence that is listed on the website of MERGE (www.meresearch.org.uk ) as recently posted in the e-BMJ by Doug Fraser. Such evidence includes documented biochemical, metabolic, vascular, neurological and muscle abnormalities in ME/CFS patients, but this evidence seems not to be to the liking of certain psychiatrists.

Despite the fact that the Health Minister, Lord Warner, confirmed in a letter dated 11th February 2004 to the Countess of Mar that the UK Department of Health and the WHO Collaborating Centre at the Institute of Psychiatry have now agreed on the classification of ME/CFS and that such classification is undoubtedly neurological, in a letter dated 28th May 2004 from the Department of Health signed by Robert Harkins (ref: TO1056746) is to be found the following: “In May 2003 we announced that £8.5 million would be made available for people with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis. This is an important step in the development of NHS services and means that we can start making improvements in the care and treatment of people with CFS/ME. This investment will enable the NHS to set up centres of expertise to develop clinical care and clinical research (and) expand education and training programmes for health care professionals. The centres will be headed up exclusively by psychiatrists”.

From this letter, it seems that the DoH is full of self-congratulation over its generous commitment to those with “CFS/ME” and sees no incongruity that all the centres are to be “headed up exclusively by psychiatrists”.

Why should this be? There is no published evidence as opposed to opinion that ME (as distinct from chronic fatigue) is a psychiatric disorder.

Why do the influential adherents to the Mental Health Movement so persistently disregard the now-abundant evidence of physiological abnormalities that are seen in ME? Is it because they choose not to look? How can any qualified physician ignore common problems found in ME and rationally conclude that such problems are psychogenic in origin, with never  a mention of the inordinate losses sustained by those who are afflicted with such problems?

Such problems include hair loss, double vision, quantifiable liver dysfunction, pancreatic dysfunction, vertigo, shortness of breath, inability to stand unsupported, severe myalgia, disrupted temperature regulation with marked intolerance to heat and cold and alternate sweating and shivering, nocturia, swollen glands, recurrent mouth ulcers, recurrent nausea, lack of bowel control, observable muscle spasm including “jelly knees” not brought about by deconditioning, oophoritis, prostatitis, intractable headache, demonstrable cardiac problems, vasculitis, definable hypersensitivities (especially to medicinal drugs and anaesthetics), alcohol intolerance, and a degree of incapacitating exhaustion about which in a statement posted on Co-cure on 3rd June 2004 Charles Lapp, Professor of Community and Family Medicine at Duke University, North Carolina (and a world expert on the disorder) says “there is no word in the English lexicon that describes the lack of stamina, the paucity of energy (and) the absolute malaise that accompanies this illness”.

Is it the case that these psychiatrists do not have patients’ best interests at heart, but only their own status and influence and that of their paymasters, with all the accolades and rewards that accompany such status? Or is it the case that the liability issue must never, ever, be officially recognised, as in the case of the Chinook helicopter crash on the Mull of Kintyre ten years ago and as in the case of Gulf War Syndrome?

Whatever the reason, attempts by these psychiatrists to eradicate ME continue to abound.

In an Editorial on somatoform disorders in the current British Journal of Psychiatry (2004:184:465-467), psychiatrists Michael Sharpe of Edinburgh and Richard Mayou of Oxford (where Sharpe used to work) present what they clearly perceive to be an appealing alternative classification and terminology for disorders including what they refer to as chronic fatigue syndrome (but which bears little resemblance to Ramsay-described ME). Sharpe and Mayou do not like the present somatoform disorder classification: they think the main limitation is that the psychogenic implication of the diagnosis is “unacceptable to many patients, making it a poor basis for collaborative management” and that such a diagnosis “may lead to the underdiagnosis of depression and anxiety”. They also point out something that many ME patients know for themselves only too well, namely that a label of somatoform disorder is “often taken simply to indicate a need to minimise access to medical care”.

The authors state that somatoform disorders could readily be re-housed within the existing classification system and that such disorders are better considered as a combination of a personality disorder and an anxiety / depressive syndrome.

However, Sharpe and Mayou want a new classification that could accommodate “behaviour” disturbances and they state that “mere tinkering” with classification and terminology of disorders such as CFS is unlikely to be adequate, urging the need for “more radical revision”. They then reveal their hand by stating “The ambitious programme to prepare for the forthcoming DSM-V and ICD-11 offers an opportunity to reconsider the somatoform disorders”.

This seems to accord with a recent letter from the UK Chief Medical Officer written in response to a request for confirmation that in the light of Lord Warner’s letter of 11th February 2004, the UK Department of Health will not seek to change the ICD classification of ME/CFS from neurological to psychiatric: in his reply, the CMO made it plain that involvement with changes in ICD classification is not within his remit as the UK WHO representative but is the responsibility of the WHO Collaborating Centre at the Institute of Psychiatry.

It is at the IOP that Professor Wessely exerts such influence amongst his like-minded psychiatrist colleagues; it is the Dean of the IOP who co-edited a psychiatric textbook with Wessely’s wife, and the Dean’s opinion about Wessely is on record in a letter he sent to the Countess of Mar on 27th August 2003 in which he stated “Professor Wessely must be judged one of the outstanding medical researchers in the UK, and indeed internationally. (He) has been awarded a Research Medal by the Royal College of Physicians (specially for work on CFS) and he has served on many prestigious scientific committees further attesting to the high regard in which he is held by the scientific community. The Institute of Psychiatry thus has every reason to have confidence in the quality and integrity of Professor Wessely’s “research”.

The letter from the CMO confirmed the worst fears of the UK ME community, namely that the issue of reclassification of ME lies in the hands of Wessely and his psychiatrist friends: concern about this is growing, as there is plentiful evidence of the psychiatrists’ determination to succeed in what they have worked so tirelessly for the last 17 years to achieve, namely the re-categorisation of “medically unexplained” disorders (including “CFS/ME”) as “functional” disorders.

From Sharpe’s Editorial, changes that would harm those with ME seem inevitable. True to the Mental Health Movement mantra, Sharpe and Mayou state “In the ‘post-somatoform’ world we envisage that there will be a renewed interest by all parts of medicine in an integrated approach to patients’ symptoms. Such a development will require that psychological assessment and intervention are fully integrated into medical care”.

Do the authors envisage that it is logistically possible for every single patient presenting with complex and chronic illness for which medicine does not yet understand the cause to be subjected to “psychological assessment and intervention” as a necessary component of medical care? Will such psychological assessments be mandatory for those with multiple sclerosis and other neurological disorders for which the cause, if not the effects, remains unknown, or is there to be special pleading only for ME/CFS?

Many informed people would doubtless concur with Alan Gurwitt MD, who put the matter concisely in a Co-cure post on 27th May 2004: “It is not well-trained psychoanalysts who are making wild generalisations about ‘somatisation’ (and) ‘functional’ symptoms etc. Psychoanalysts depend on a carefully gained understanding of each individual rather than cursory evaluations that are often inaccurate and misleading yet pass for ‘science’ “.

What passes for “science” is of great relevance to those with ME, for example, on what rational basis can the Medical  Research Council persist in ignoring the evidence of organic pathoaetiology in the world literature on ME/CFS that has been provided for its use?

It would seem to defy reason for the MRC to maintain, as it does, that the publicly-funded PACE trials for “CFS” patients (described as such in the Trial Identifier, though not now on the MRC website, which refers to them as “CFS/ME” patients) will indeed use the broad-ranging Oxford entry criteria that were compiled by Sharpe and Wessely et al in 1990 and published in 1991.

It must be asked why the Oxford criteria were passed by the MRC reviewers in relation to studies of people with ME, because it is the case that the Oxford criteria specifically include those with psychiatric disorders and specifically exclude those with neurological disorders; the Oxford criteria never attained international consensus and have been superceded.

In apparent response to public disquiet about the use of the Oxford entry criteria, it was confirmed by the MRC that there will now be additional “secondary analysis” of the data, as such secondary analysis might identify the more severely affected, but there was no mention of any “secondary analysis” in the Trial Identifier.

It is a straightforward fact that if those with classified neurological disorder are to be excluded from the outset by virtue of the Oxford entry criteria, no amount of “secondary analysis” will reveal those with classified neurological disorder, and it is seen as offensive for the MRC to patronise desperately sick ME patients by such condescending and meaningless platitudes.

When concerns about the MRC trial entry criteria were made public, there were repeated assurances from both the MRC and the Department of Health that those with ME would not be excluded from the PACE trials. However, if this is so, then on what basis are those with ME to be included in the MRC trials, given that the Oxford criteria stipulate that patients with neurological or organic brain disease must be excluded?

Is it in fact the case that those with ME are to be included on the basis that “CFS/ME” is deemed by the MRC (and by the psychiatrists running the trial) to be a psychiatric disorder and therefore to come under the aegis of the Oxford entry criteria? It is a matter of published record that Wessely believes “neurasthenia would readily suffice for ME” and in the same item he pointed out that “the term neurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders”. (Chronic fatigue, ME, and ICD-10 Anthony David, Simon Wessely. Lancet 1993:342:1247-1248).

It seems that these powerful psychiatrists whom the MRC holds in such esteem are still calling all the shots, apparently for no more scientifically robust a reason than that the very psychiatrists who are to carry out the trials have chosen to use their own criteria for “CFS” in the sure knowledge that those eligible to be enrolled do not suffer from Ramsay-described ME but from chronic fatigue, and may therefore stand some chance of gaining at least some benefit from the psychiatrists’ favoured behaviour-modifying intervention.

This being so, the results of the trials may be anticipated to confirm that people with “CFS/ME” do improve with Wessely’s brand of cognitive behavioural therapy, even though people with Ramsay-described ME would in reality be excluded by virtue of the trial entry criteria. Although unthinkable, could this be calculated deceit for financial gain?

The deliberately heterogeneous population that is to be studied in the MRC PACE trials on “CFS” is a matter of mounting concern. It is hardly what most  people would regard as good science to include in the same study those who from the outset are known to suffer from a different disorder that is separately classified in the ICD, yet those with fibromyalgia (classified in the ICD-10 at M79 under Soft Tissue Disorders) are to be included in the MRC trials on “CFS”, together with those who suffer from medically unexplained fatigue (classified in the ICD-10 at F48.0 under Mental and Behavioural Disorders) as identified by the Oxford criteria.

It is the case that at a meeting of the All Party Parliamentary Group on Fibromyalgia held on 12th May 2004 at the House of Commons, the Parliamentary Under Secretary of State at the Department of Health (Dr Stephen Ladyman MP) announced that GPs would be offered financial incentives and encouraged to identify patients with fibromyalgia and to refer them to the new “CFS/ME” centres, where these fibromyalgia patients would be included in the CFS study.

Despite such intentional heterogeneity, it seems that the results of the MRC PACE trials on “CFS” are likely to be claimed to relate to those with specific Ramsay-described ME (classified in the ICD-10 at G93.3 under Disorders of the Nervous System).

It remains to be explained how the lumping together of such a deliberately heterogeneous study population can yield accurate and meaningful scientific results that relate to those with ME when, by the Oxford case definition entry criteria, those with ME will have been excluded from the study.

To many knowledgeable and informed people, including medical scientists, this smacks of state control and of sinister science designed for purely political ends.

To whom can ME patients now turn? Despite initial interest, enthusiasm and commitment, even the Chairman of the House of Commons Select Health Committee, David Hinchliffe MP, has declined to take the ME situation on board, now claiming that it is a matter of divergent medical opinion and is therefore not something with which the Select Health Committee could become involved. When she heard this, the well-informed ex-wife of a prominent Member of Parliament said that such an about-turn was “interesting”, and wondered if those involved had been leant on “by people in high places”.

Why will the usually rapier-sharp investigative media not pay proper and sustained heed to ME patients’ quite desperate plight? Is that not their job? Or is it the case that, as in anything to do with ME, they, too, are being effectively controlled by sinister science and by Government? Some people think so.

Margaret Williams, 5 June 2004

From Connie Nelson

28 February 2008

Revision of CFS – ICD and DSM

As we’re all aware, many psychs and their compadres are desperate to have CFS officially accepted as a mental disorder eg mental / behavioural disorder and included in the DSM but in order to achieve this it also has to be included in the ICD as a mental disorder.

See extracts from 2 different documents below:

C. ICD-DSM Harmonization Group Introduced by Dr. Shekhar Saxena

Summary Report of the 3rd Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders 1 World Health Organization Department of Mental Health and Substance Abuse Geneva, Switzerland

Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders 11 – 12 March, 2008, Geneva SWITZERLAND

http://www.who.int/mental_health/evidence/icd_summary_report_march_2008.pdf

The task of this group is to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD- 11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria.

Dr. Saxena emphasized the genuine desire of both organizations to achieve harmonization of the two systems. He described a variety of specific issues related to differences between the DSM and the ICD-10 that are important areas of discussion by the Harmonization Group.

The AG endorsed the following statement intended to guide the WHO representatives in their activities as part of the ICD-DSM Harmonization Group:

“WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM. Adaptations of the ICD should be directly translatable into the core version.” 

“The timeline for the revision process is as follows: the Alpha draft version of ICD-11 should be completed in 2010,  followed by 1 year for commentary and consultation. The Beta draft version should be completed in 2011, followed by field trials, analysis of field trial data, and revision during the subsequent 2 years. The final version for public viewing should be completed in 2013, with approval by the World Health Assembly in 2014.”

…and then:  [Ed: Review paper published by the CISSD Project leads, July 2007]

http://psy.psychiatryonline.org/cgi/content/full/48/4/277 

3. Should the conditions currently diagnosed as Somatoform Disorders remain psychiatric disorders on Axis I in DSM-V?

5. How should functional somatic syndromes be classified?

These so-called functional somatic syndromes include conditions such as irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, interstitial cystitis, and others.

These syndromes are overlapping and frequently coexist. [35]  Also, there are individual symptoms, such as tension headache, low back pain, non-ulcer dyspepsia, and atypical chest pain, to name a few, for which the etiology is unknown. These functional syndromes and somatic symptom-defined conditions, if regarded as medical, would properly be placed on Axis III as general- medical conditions.

However, this practice can be seen as inconsistent if a patient with the same symptoms seen by a psychiatrist is diagnosed with a somatoform disorder on Axis I. Expert opinion differs about whether functional somatic syndromes and somatoform symptoms should be combined in a new classification system [12] or whether, in the absence of clear linkage to psychological factors, the default should be to code somatic symptoms and syndromes on Axis III. [22,23]

Connie Nelson

CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference

Note: The programme for last year’s Collaborative Conference was developed in collaboration with the UK ME/CFS charities AfME (Action for ME) and AYME (Association of Young People with ME). 

A copy of the 2007 programme is archived here: http://tinyurl.com/ccrnc2007

The 2007 Conference presenters had included Vincent Deary (formerly King’s College London CFS Unit), Trudie Chalder (Professor of Cognitive Behavioural Psychotherapy, Department of Psychological Medicine, King’s College London and colleague of Professor Simon Wessely) and Dr Mary Burgess (Chronic Fatigue Syndrome Research and Treatment Unit, KCL), author of Physiological Aspects of Chronic Fatigue Syndrome

This unreferenced article, based on the work of Dr Pauline Powell (MRC FINE Trial) concludes that the symptoms of “CFS” are caused and maintained by “deconditioning”, “faulty illness beliefs” and anxiety and that there is good evidence to show that the effects of these are “reversible by a programme of gradual physical rehabilitation”.

The 2007 Keynote speaker was Professor Gijs Bleijenberg, Clinical Psychologist and Head of the Nijmegen Expert Centre for Chronic Fatigue, Netherlands – another speaker from the “CBT for CFS” school.

Members of UK ME patient organisations, non members and the international ME community were outraged, in 2007, by the endorsement of this conference by our patient organisations AfME and AYME.

This year’s Keynote Speakers will be Professor Mansel Aylward, Director of Unum Centre for Psychosocial and Disability Research (CPDR), University of Cardiff on “Pathways to work (exact title tbc)“ and Professor Christine Heim, Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, USA who will address the conference on “Early Adverse Experience as a Risk factor for CFS: A Psychobiological Perspective”.

What is there to say, other than that Action for ME and AYME’s endorsement of these conferences is enough to make you weep.

2009 Collaboration Conference Programme Flyer

Action for ME  |  AYME   |  NHS

CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference

PDF Flyer 

AYME and Action for ME in collaboration with the CCRNC

Milton Keynes 23rd-24th April

This is the second national conference for specialist services and health professionals working with people with Chronic Fatigue Syndrome/ME.

The aims are fourfold:

i) to invite national and internationally renowned speakers to broaden the understanding of CFS/ME, both theoretically and practically

ii) to run workshops where relevant issues are discussed more informally

iii) to serve as a forum for national meetings and the AGM.

iv) to provide varied networking opportunities.

We have endeavoured to have a range of topics covered. These include the national research agenda, biological factors, ways of working with clients/patients, involving service users, work, diet, and looking at the measurement of fatigue in other health conditions. Presenters/workshop conveners include occupational therapists, psychologists, medics, neurologists and dieticians.

The inaugural conference in October 2007 was very well attended and well received. Our hope is that this year’s meeting is equally successful.

The AGM and Collaborative Executive meetings will be held first on the  Thursday.

After the opening address and Keynote Speaker, the workshops will run in parallel sessions in the afternoon. Each workshop will be run twice, allowing people to attend two workshops in the conference. You can choose your preferred workshops on the attached application form, or decide on the day (although some of the workshops may be filled by then). Friday is given over to the plenary and second Keynote Speaker, and time for viewing posters.

The conference dinner will be held on the Thursday night in Jurys Hotel.

You will find a registration form at the end of this document: please complete this, and return it before March the 6th 2009 for an “Early Bird” discount.

Registration Fees are:

• Early registration £100 for one day, £150 for both
• Late registration £125 for one day, £200 for both days
• Conference Dinner: £30 plus wine

Accommodation is not included within these costs (see below for accommodation details).

CME approval is pending: attendance certificates will be supplied.

Poster Session

An invitation has been sent for posters for the conference. The deadline has, now passed but please contact Gabrielle Murphy for any further information.

(Gabrielle.Murphy@royalfree.nhs.uk ).

CRCCNRCRRC AGM and Executive Committee Meeting: Thursday

Please contact Esther Crawley (Esther.Crawley@Bristol.ac.uk) for more details.

 

Thursday: Keynote Speaker

Professor Mansel Aylward

Director of Unum Centre for Psychosocial and Disability Research (CPDR), University of Cardiff

Pathways to work (exact title tbc)

 

Workshops: Thursday Afternoon

Delegates can choose to attend two out of the following workshops:

 

A brief introduction to Motivational Interviewing

Jane Griffin

(Lead Commissioning Manager for Plymouth PCT)

 

The NOD (National Outcome Database) and evaluating services

Esther Crawley

(RNHRD CFS/ME Service for Children and Young People, Bath)

 

Helping people retain and return to work

Beverley Knops and Fiona Wright

(Frenchay CFS/ME Service, Bristol)

 

Lessons from my journey – feedback from collaborative projects between patients and professionals.

Sue Pemberton

Leeds & West Yorkshire CFS/ME Service

 

Talking about Sex: Missing Conversations in CFS/ME

Dr Amanda O’Donovan

Barts and the London NHS Trust

 

Dietary management of CFS/ME

Judith Harding and Sue Luscombe

NHS South West Essex Community Services

 

Friday: Keynote Speaker and Plenary Sessions

KEYNOTE SPEAKER:

Professor Christine Heim

Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, USA

“Early Adverse Experience as a Risk factor for CFS: A Psychobiological Perspective”

 

Dr Esther Crawley

RNHRD Paediatric CFS/ME Service, Bath.

“Current research in paediatrics and early intervention in schools”

 

Dr Jeremy Hobart

Peninsula Medical School, Plymouth, UK.

The challenge of measuring fatigue (exact title tbc)

 

Dr Mary Welford

Compassionate Mind Foundation

“Compassion Focused Therapy and Engagement”

 

Professor Stephen Holgate

MRC Research Professor of Immunopharmacology, Southampton University

“Setting a new research agenda for CFS/ME”

 

Accommodation

Accommodation is available in Jurys Hotel itself. Please book on line and book early for the best rates. Prices start from £75 per night.

www.jurysinn.com

There is a link to more accommodation details on the registration form.

YouTube: What happened to Sophia Mirza who died from ME/CFS

What happened to Sophia Mirza who died from ME/CFS

Comments can be left at: http://www.youtube.com/watch?v=7mZMpvtD3rg

From  MaverickMiracle 7.48 mins
Date added: 14 January 2009

Criona Wilson, mother of the late Sophia Mirza, tells how her daughter suffered unnecessarily.

Read Sophia’s documented story at SOPHIA AND M.E.

http://www.sophiaandme.org.uk/

———————

Criona addressed the All Party Parliamentary Group on ME’s July 2007 meeting where she spoke about the events leading up to her daughter’s death in 2003.

In June 2006, a commentary on the inquest of Sophia Mirza was published by Margaret Williams and Eileen Marshall:

Download document: Inquest Implications from the 25% M.E. Group website

( http://www.25megroup.org/Campaigning/Awareness%202006/Sophia’s%20story/Inquest%20Implications.doc )

Media coverage of Sophia’s story at:

http://uk.youtube.com/watch?v=dJvFwhW3FUY

http://uk.youtube.com/watch?v=mOqX0MPVYpE

http://uk.youtube.com/watch?v=0Y_T5ylWUv4

A NICE Conundrum? Margaret Williams 30.12.08

This commentary is published by Margaret Williams in relation to the forthcoming Judicial Review in the High Court in February ‘09.

It is available as a formatted document at the MEActionUK website.  Queries in relation to this commentary should be referred directly to Margaret Williams, via Stephen Ralph of MEActionUK.

http://www.meactionuk.org.uk/A_NICE_Conundrum.htm

A NICE Conundrum?

by Margaret Williams

30th December 2008

A NICE conundrum seems to have presented itself, which the Judge in the Judicial Review of the NICE Clinical Guideline on “CFS/ME” may require NICE to explain for the benefit of straight-thinking folk who cannot readily understand such brain-teasers.

Straight-thinking folk know that NICE is funded by the UK Department of Health.

These straight-thinking folk also know that the NICE Guideline on “CFS/ME” (CG53) recommended as the primary intervention only behaviour modification, together with incremental aerobic exercise (cognitive behavioural therapy / CBT and graded exercise therapy / GET) for a disorder that NICE’s own paymaster accepts is a neurological disease, this having been confirmed once again in Hansard by the Parliamentary Under-Secretary of State, Department of Health, Lord Darzi, on 2nd June 2008.

It seems remarkable indeed that people unfortunate enough to be stricken with a neurological disease should not be permitted by NICE to be adequately investigated, but straight-thinking folk also know that NICE claims that its recommendations for CBT and GET in its Guideline are based on the very best evidence-base, which must surely re assure these straight-thinking folk that they will be receiving the best possible management of their life-destroying disease.

But here’s the conundrum: NICE’s own paymaster (i.e. the Department of Health) is on record as stating – in writing – that it holds no evidence that the interventions recommended by NICE in CG53 actually work in restoring the return to work (this being the underlying purpose of the recommended management interventions).

This was revealed when the Department of Health was asked about the recommendations set out in the NHS Plus National Guideline – which the Department itself notably funded — that was published in October 2006, (“Occupational Aspects of the Management of Chronic Fatigue Syndrome: A National Guideline” in which Wessely School members Professors Trudie Chalder, Peter White and Michael Sharpe were instrumenta), the recommendations in that Guideline being the same recommendations that were adopted by NICE in its Guideline of August 2007.

Crucially, both Guidelines were based on the same “evidence-base”: of six Wessely School studies, three were co authored by Trudie Chalder and one was co-authored by Peter White. In the NHS Plus Guideline, the Wessely School authors made inflated claims for the efficacy of CBT/GET in returning people with “CFS/ME” to gainful employment (“CBT and GET have been shown to be effective in restoring the ability to work”), but a US systematic review of the “evidence-base” had reported that “No specific interventions have been proved to be effective in restoring the ability to work” (SD Ross et al: Arch Intern Med 2004:164:1098-1107).

The key fact here is that the NHS Plus Guideline cited the Ross systematic review as its own evidence-base.

An inquiry was therefore made of the DoH how such divergent conclusions could be drawn from the same systematic review of the same publications – one conclusion by Ross et al and the exactly opposite conclusion by the Wessely School. In the light of such an obvious dichotomy, the DoH was asked a simple and direct question: “Does the Department agree with the statement that cognitive behavioural therapy and graded exercise therapy have been shown to be effective in restoring the ability to work in those (with ME/CFS) who are currently absent from work?”

On 6th June 2008 the written response from the DoH was unequivocal: “The Department does not hold any data that support this claim”. So here we have a situation in which the Department of Health (which funds NICE and which funded the NHS Plus Guideline) is on record as stating that it has no data to support the claims made by both the NICE Guideline and the NHS Plus Guideline.

If the Department itself holds no data showing that CBT/GET are in fact effective, where is this data? Does it actually exist, or is it merely a contrived “evidence-base” created by the Wessely School, whose vested interests in claiming its efficacy cannot be denied?

Regarding the obvious and serious conflicts of interest of the Wessely School in relation to the NHS Plus Guideline, on 23rd December 2008 a remarkable revelation was made – in writing – by Dr Ira Madan, Director of Clinical Standards, NHS Plus (who, with Wessely and Chalder, is based at Kings College): “The Department of Health have (sic) asked me to investigate your concern that one of the guideline development group members, Professor Trudie Chalder, and the two external assessors, Professor Michael Sharpe and Professor Peter White, had conflicts of interest whilst involved in the production of the guideline. I can confirm that I was aware of the potential for competing interests that you have stated. The roles that Professor White, Professor Sharpe and Professor Chalder have undertaken for the agencies and companies that you stipulate (i.e. the medical insurance industry) were in the public domain prior to the publication of the NHS Plus guideline. I am content, as the Director of that guideline, these potential competing interests did not in any way influence the synthesis of the evidence or the guideline recommendations”.

As straight-thinking folk will recall, the NHS Plus Guideline states “No conflicts of interest declared”, yet Dr Ira Madan is here acknowledging the existence of these Wessely School conflicts of interests, but stating that she is “content” about the situation, as people already knew about them.

In the Wessely School world of NHS Plus, two researchers were allowed to sit in judgment on their own publications, with the permission of Dr Ira Madan. They were not required to make conflict-of-interest declarations. This is not peer-review as the rest of the scientific world understands it.

Notably, the same people (Chalder, Sharpe and White) who were involved with the production of the NHS Plus Guideline (where they declared no conflict of interests) did declare and list very serious conflicts of interest in the MRC PACE trial documentation: “PDW has done voluntary and paid consultancy work for the Departments of Health and Work and Pensions and legal companies and a re-insurance company. MCS has done voluntary and paid consultancy work for government and for legal and insurance companies. TC has done consultancy work for insurance companies, is the author of Coping with Chronic Fatigue published by Sheldon Press and co-authors Overcoming Chronic Fatigue with Mary Burgess published by Constable and Robinson.”

( http://www.biomedcentral.com/1471-2377/7/6 ).

This is remarkably different from what the Department of Health confirmed in relation to the NHS Plus Guideline – in writing – on 20th November 2008: “I can confirm that the guideline contributors gave written confirmation that they had no conflicts of interest”.

What can explain such a marked discrepancy, and why should a statement have been published saying that no conflicts of interest exist when serious conflicts of interests are undoubtedly involved?

Not only do we now have written evidence that (i) the Department of Health holds no data that the recommendations in both the NHS Plus Guideline and in the NICE Guideline are in any way effective in restoring the ability of people with ME/CFS to return to work, and (ii) that two members of the DoH (William Scott and Dr Ira Madan) have made statements on the same issue that diametrically oppose each other, but we also have written evidence – straight from Dr Madan at the Department of Health – illustrating how the normal rules of independent peer review and conflicts of interest are regularly suspended when it comes to the “evidence-base” for CBT/GET in people with ME/CFS.

Consequently, as Dr Madan has stated that the Wessely School’s conflicts of interests did not make any material difference, she is now being requested to explain WHY the conflicts of interest she has acknowledged exist were not recorded as required, since conflicts of interest should be recorded to enable people to make up their own mind whether or not the conflicts matter. Such an important issue is not up to Dr Madan to decide but is – or should be – determined by the AGREE Instrument.

Even though it is in the public interest to publicise that there is a potentially dangerous guideline in circulation that was engineered by Wessely School members whose conflicts of interest in respect of the medical insurance industry are legion (and who have no expertise in infection or in inflammation or in immunology that underpin ME/CFS), the Judge will not be considering the issues surrounding the NHS Plus Guideline

It is, however, hoped that the Judge will require the particular conundrum pertaining to NICE to be explained so that straight-thinking folk can understand it, namely, why NICE recommended interventions for “CFS/ME” for which its own paymaster (the Department of Health) has stated that there is no supportive data.

http://www.meactionuk.org.uk

Dr Chris Bass (PULSE somatoform disorders article) and UNUM

See also posting:

https://meagenda.wordpress.com/2008/12/27/selected-papers-co-authored-by-dr-christopher-bass/

***************************************************************************************

Dr Chris Bass (PULSE Need to know: somatoform disorders, 10 December) and UNUM

Several more comments to the original Bass article, including responses from Dr Ellen Goudsmit and a retired GP, have been published by PULSE.

Read the original article PULSE Bass article (10.12.08 ) and responses from Jan Karmali, 11 Dec; Tom Kindlon (Irish ME Society), 15 Dec; Dr Ellen Goudsmit (Health Psychologist), 17 Dec; Graham Thompson (retired GP), 18 Dec; Arthur Finnie, 19 Dec, here:

http://www.pulsetoday.co.uk/story.asp?sectioncode=18&storycode=4121412

On 18 December, PULSE Blog Team published a commentary on this article here:

http://www.pulsetoday.co.uk/story.asp?storycode=4121546

Chronic fatigue syndrome and somatoform disorders, contrary views, 18 Dec 08

Dr Christopher Bass’s recent article on somatoform disorders, and in particular his inclusion of chronic fatigue syndrome and fibromyalgia within this grouping, has provoked a strong response from sufferers of the condition.

There is a highly vocal ME/CFS lobby which strongly opposes the categorisation of the condition as a psychiatric/mental disorder, arguing strongly that it is primarily caused by physical components.

Rather than add their extensive comments as feedback to Dr Bass’s article, which rather than stimulating debate we felt would somewhat drown it out, we reproduce them here for you to consider. What’s your view? Has there been too little focus on the physical aspects of CFS and Fibromyalgia?

Or are those with these conditions being overly sensitive to a diagnosis that it’s a psychiatric disorder, with the historic stigma this brings that ‘it’s all in the mind’ and that the sufferer is ‘weak’.

May we also stress that, as pulsetoday is a site for GPs and other health professionals, it is people from these groups whose views we seek.

Below this commentary, PULSE has published responses from: Jacqui Butterworth; John Anderson; Jacqui Footman (Information and Publicity Officer, South Molton ME Support Group); Jill Cooper.  Under “Readers’ Comments”:  Karen Shotton DCR (Health Service Professional), 21 Dec.

PULSE has yet to publish the response submitted by the ME Association.  This can be read in the news update section of the MEA’s website here:

http://www.meassociation.org.uk/content/view/735/70/

or on ME agenda here

—————————————-

Dr Chris Bass, formerly of King’s College Hospital, London, is a consultant liaison psychiatrist at the John Radcliffe Hospital, Oxford. 

According to this conference agenda:

http://homepage.ntlworld.com/honor.merriman/oxfordprimarycarelearning/events/2008/march/180308.pdf

“Dr Christopher Bass is Consultant in Liaison Psychiatry at the John Radcliffe Hospital, Oxford, and Honorary Senior Clinical Lecturer in Psychiatry at the University of Oxford. He is the author or co-author of several influential texts in psychosomatic medicine, including ‘Somatisation: Physical symptoms and Psychological illness’, ‘Treatment of Functional Somatic Symptoms’, ‘Contemporary Approaches to the Science of Hysteria: Clinical and Theoretical Perspectives’, and, most recently, ‘Malingering and Illness Deception’.”

The John Radcliffe, Oxford is one of the six PACE Trial Centres.  The MRC funded PACE Trial began in Autumn 2004 and is due to be completed in 2009.  The NICE Guideline G53 on “CFS/ME”, published in 2007, is due for review in 2009.

Incidentally, there is a Job Description and Person Spec for a Research cognitive behaviour therapist for the Oxford Centre arm of the MRC PACE trial here:

http://www.oxfordradcliffejobs.nhs.uk/admin/document.asp?vacid=1553&doctype=jobdesc

or open the Word file here on ME agenda:  CBT PACE Research Job spec

“This is a unique opportunity to learn specialised treatment skills and to participate in a high profile Medical Research Council funded treatment for patients with chronic medically unexplained fatigue (CFS/ME).”

[NB: No date for close of applications for this vacancy was given, but the Properties for this Oxfordshire Mental Healthcare NHS Trust Word doc file gives the “Last printed” date as 29/06/05.]

————————————–

I cannot confirm whether Dr Bass had any involvement in the development of the MRC’s PACE Trial, with the Oxford (John Radcliffe) arm of the PACE Trial or whether he has any involvement with the John Radcliffe Hospital specialist CFS clinic or the Oxfordshire Community CFS/ME Team (OCCMET), see:

http://www.oxfordshirepct.nhs.uk/local-services/community-services/occmet/default.aspx

(I note the website for the Oxfordshire Community CFS/ME Team recommends books by Chalder, Burgess, Sharpe and Campling.)

We are already familiar with Dr Bass’s name through the contribution he and Professor Simon Wessely made to the UNUM Chief Medical Officer’s Report 2007: Mind over Matter – Exploring the issues of Mental Ill Health.  

I thought it might be useful to set Dr Bass’s PULSE Need to know: somatoform disorders article in the context of his contribution to the UNUM CMO Report 2007.

Open PDF on ME agenda here:   UNUM CMO Report 2007  (approx. 2.4MB)

or direct from UNUM link, here:

http://www.unumprovident.co.uk/NR/rdonlyres/C22C5183-95E7-468D-8D72785867135C7F/0/CMOreport2007_UP1431.pdf

If you’re not on broadband, there’s an html version here:

http://www.unumprovident.co.uk/Home/AccessiblePDF/CMOreport2007.htm

Mind over Matter – Exploring the issues of Mental Ill Health.
Chief Medical Officer’s Report 2007.

In his introduction to this report, Professor Michael O’Donnell, Chief Medical Officer Unum, writes:

“Mental health is not just an issue for those people with an overt diagnosis of mental illness. In last year’s Chief Medical Officer’s Report (Rehabilitation – Keeping people in work), Professors Gordon Waddell and Kim Burton pointed out that a high proportion of people who have been off sick for longer than six months suffer from what are referred to as common health problems. In these, subjective symptoms predominate; and many other people with similar complaints continue with life as normal and recover from them quickly. Research from the Unum Centre for Psychosocial and Disability Research at Cardiff University has shown that over 45% of people state they have experienced one form or another of health complaint in the last month. Waddell and Burton pointed out that it is as much psychosocial as biological issues that obstruct recovery, and that it is at least as important to understand these and address them as it is to treat the medical problem that led to the absence. In many cases, depression will become a perpetuating factor, leading to people feeling demotivated and worthless.

“It is for this reason that I have asked Dr Chris Bass and Professor Simon Wessely to contribute to this year’s report. Both are psychiatrists who work at the interface between psychological and physical health, so I asked them to write on what many others as well as me believe to be obstacles to recovery from ill health. They are both known for their firm beliefs and we have two challenging articles from them.

“In the first article by Dr. Chris Bass, he explores why so much stigma is attached to a psychological diagnosis, and why people with physical problems can be so resistant to psychological therapies. He identifies that many psychological labels, such as psychosomatic are often interpreted to mean imaginary or made up. He also bemoans the split between conventional medicine and psychiatry, pointing out that psychological aspects of illness are largely ignored during the investigation process, and are rarely addressed even after serious ill health has been excluded. […] Dr Bass applauds the response of the insurance industry to the challenge, but points out that the NHS is very slow to provide funding for joint psychological and physical approaches for people, not only with common health problems, but also with what might be termed unconventional disorders, which can be just as debilitating as many conditions which are recognised to be severe, but physical.”

Read the contributions by Dr Chris Bass and Professor Simon Wessely here:

The Interface Between Psychiatric and Physical Disorders – Dr. Chris Bass

Why and When do Doctors Collude with Patients? – Professor Simon Wessely

According to the UNUM CMO’s Report 2007:

“[Dr Chris Bass] trained in medicine at Cambridge University and St. Thomas’s Hospital in London and in Psychiatry at King’s College Hospital in London. He has been working as a Consultant in Liaison Psychiatry at the John Radcliffe Hospital in Oxford since 1991 where he has carried out collaborative research with many different hospital specialists. His main areas of research and clinical interest include patients with persistent medically unexplained physical symptoms and patients with fabricated illnesses. He is particularly interested in patients who exhibit “surgery prone behaviour,” for whom the medical model has little to offer. He is also very interested in child protection, and carries out assessments of parents with mental health problems. Between 1993 and 1997 Chris was Chairman of the Liaison Psychiatry Section at the Royal College of Psychiatrists, and in 1997 he was co-chairman involved in the publication of a working party report on the psychological care of surgical patients jointly with the Royal College of Surgeons. Chris has edited or co-edited five books since 1990.”

In October 2007, Margaret Williams and Eileen Marshall published this commentary around the UNUM CMO’s Report, Dr Bass and Professor Wessely’s contributions to the UNUM Report and CBT:

UNUM UNITED?

by Margaret Williams and Eileen Marshall
12 October 2007

On 10th October (World Mental Health Awareness Day) UK Health Secretary Alan Johnson MP announced that £170 million a year will be released to provide cognitive behavioural therapy (CBT) across the board for mental illnesses in England, to be delivered by the recruitment of 3,600 “therapists”, and that 900,000 people who suffer from depression and anxiety in particular will benefit (“More funds for talking therapies”. BBC News, 10th October 2007). Lord Layard (the “happiness tsar” who supports this policy) said on BBC Radio 4 midnight news that he is delighted, because CBT is “state of the art treatment” and that “half of the patients will be completely cured”.

Do patients in the UK who have been diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) fall into the category of “mental illness”?

According to Wessely School psychiatrists and the Medical Research Council (MRC), they do.

The Wessely School and the MRC persistently refuse to accept the World Health Organisation classification of ME/CFS as a neurological disorder and seem to have little regard for accuracy of diagnosis or for the catastrophic consequences of misdiagnosis.

On 12th December 1998, “Disability Now” reported that Dr Nigel Speight, a consultant paediatrician with extensive experience of ME/CFS, went on record saying he feared the old idea that ME/CFS is not a real condition, only a  state of mind, was still at work. Despite the biomedical evidence that has emerged since then, it seems that the Wessely School  continues to believe that ME/CFS is simply a state of mind.

What neurological disorder has ever been cured by a course of CBT? Where is the evidence? Even the Wessely School proponents of CBT concede that “few patients regard themselves as cured after treatment” (Anthony W Clare, Peter D White. In: Psychological Medicine (in) Clinical Medicine, Ed: Kumar and Clark. Saunders, 2005, p/b).

Despite this, it has been confirmed that the only NHS provision for those with ME/CFS is to remain psychiatric: on 9th October 2007, Hansard recorded that in answer to the question asking what plans the Government has to provide support for those affected by CFS, Ann Keen, Parliamentary Under-Secretary of State at the Department of Health, replied: “We have no current Government plans to provide support for further specialist national health service centres for those living with CFS”.

In the BBC “PM” programme on 11th October 2007, clinical psychologist Oliver James said claims about the efficacy of CBT were a bare-faced lie on the part of the Department of Health, and that even if patients did improve, after 18 months they were all back to where they were before.

According to the Conference Report “M.E./CFS research summit workshop” produced by Action for ME, of the AfME/MRC joint Summit held in November 2006, Peter White said that the UK leads the world in behavioural interventions for ME/CFS.

Why are behavioural interventions even on the agenda for a disease described by Professor Nancy Klimas from Miami at the same Summit as having an increase in class II antigens HLADR4, DR5, DQ3, (HLA antigens are responsible for the immune system being activated to detect and eradicate foreign bodies) and an immune response that has persistently shifted to the Th2 system (so the Th1 system does not function properly), which means that the Th2 cytokines activate B-cells, which in turn results in the production of auto-antibodies which can trigger autoimmune disease, as well as profound allergic reactions?

Put another way, how can behavioural interventions such as re-educating the mind to believe that ME/CFS does not exist as an organic disorder possibly be effective in restoring the immune system dysregulation (including the chronic immune activation) that is characteristically seen in ME/CFS? Such mind-changing “interventions” are not the same as providing support and help in managing a life-shattering disease.

Could it be that Wessely School psychiatrists do not understand immunology? Certainly, on his own admission, Simon Wessely does not understand immunology: he stated this at his Gresham College lecture on 25th January 2006 (”Something old, something new, something borrowed, something blue: the true story of Gulf War Syndrome”).

If the “biopsychosocial” approach worked and did not result in serious relapse, and if the biological factors seen in ME/CFS were “largely reversible” (as claimed by Wessely and Sharpe in their chapter “Chronic Fatigue and Neurasthenia: A Review” in Somatoform Disorders, Volume 9, edited by Mario Maj et al, John Wylie & Sons, 2005), there would be no long-term sufferers from ME/CFS because patients are desperate to regain their health and independence. Although the title refers to “chronic fatigue”, it starts by announcing: “This chapter reviews current knowledge about chronic fatigue syndrome (CFS) and neurasthenia”, which immediately reveals not only a telling lack of scientific rigour, but also the underlying agenda of the Wessely School.

For more extracts from that chapter, see http://www.meactionuk.org.uk/More_on_the_Myth.htm

The GMC recently criticised and struck off a doctor for practising outside his area of expertise. It is not possible for psychiatrists who have not undertaken post-graduate training to be experts in such complex fields as immunology, vascular biology or gene expression that are known to be disrupted in ME/CFS, so why do they regard and promote themselves as experts in this disorder?

Stephan (or Stefan) Priebe from the Unit for Social and Community Psychiatry  at Barts and The London School of Medicine and colleague and collaborator of Professor Peter White is well-known for his view about CBT: “(Patients’) frequent insistence on physical causes for the fatigue has been identified as an obstacle to successful treatment”. In other words, non-recovery after a course of CBT is the patients’ own fault, rather than the fact that the nature of the disorder precludes recovery following a course of brain-washing techniques.

Priebe has equally clear views about the value of diagnosis: “The criterion for a diagnosis is not whether it does or does not exist in reality, but whether it is useful” (Stephan Priebe, (In): Somatoform Disorders, Volume 9, page 289. Ed: Mario Maj et al; John Wylie & Sons, 2005).

A diagnosis is certainly useful for the medical insurance industry, if not for the patient, because a diagnosis of a mental disorder means the insurance company has either no – or greatly reduced – liability for the payment of benefits. The same exclusions apply to eligibility for certain state benefits in England.

The principal beneficiaries of a correct diagnosis used to be the patient but not, it seems, any longer: since the corporate take-over of medicine and the NHS by the multi-national conglomerate, the principal beneficiary of “diagnosis” is the conglomerate, in which the medical insurance company Unum is a world player.

In his Annual Report for 2007, entitled “Mind over Matter – Exploring the issues of Mental Ill Health”, the Chief Medical Officer of Unum (Professor Michael O’Donnell) says:

“With mental ill health problems now accounting for around 30% of all our claims, and 40% of claims for Incapacity Benefit, now is the time to consider what we, as employers, can do about the problem (because) this represents one million incapacity claims for mental and behavioural disorders. Cognitive Behavioural Therapy (CBT) has the best evidence base for effectiveness. In last year’s Chief Medical Officer’s Report (Rehabilitation – Keeping people in work), Professors Gordon Waddell and Kim Burton pointed out that a high proportion of people who have been off work for longer than six months suffer from what are referred to as common health problems in (which) subjective symptoms predominate (and) it is as much psychosocial as biological issues that obstruct recovery. It is for this reason that I have asked Dr Chris Bass and Professor Simon Wessely to contribute to this year’s report. I asked them to write on what many others as well as me believe to be obstacles to recovery. They are both known for their firm beliefs. […] Dr Bass applauds the response of the insurance industry. […] Professor Wessely has written on collusion (and he) points out that this can be part of the therapeutic process”.

Was O’Donnell being sardonic in paraphrasing Wessely’s article in terms: “Problems can occur when doctors have a financial interest in their clients remaining unwell”?

It is noted that O’Donnell’s particular listed interests include “the biopsychosocial model of incapacity”.

O’Donnell refers to the “firm beliefs” of Bass and Wessely; others might refer to those beliefs not as “firm” but as fanatical. Whatever the adjective, that is all they are – beliefs. The elective ignoring of the scientific evidence that discredits those beliefs is astounding.

As far as ME/CFS is concerned, it defies credibility that a policy that is to be rolled out nationwide at such considerable cost should be predicated on the unproven beliefs of a small group of psychiatrists whose contempt and disdain for their patients with ME/CFS seems virtually tangible (see below). How can such beliefs spread like a virus throughout the UK, when there is so much published evidence demonstrating that such beliefs bear no relationship to scientific reality and are not supported by the international evidence that ME/CFS is a multi-system organic disorder of devastating impact?

Unum, however, seems happy to continue to ignore this evidence, and in what seems to be an attempt to portray the company as enjoying an impeccable reputation, the document proclaims: “Unum Limited is authorised and regulated by the Financial Services Authority”, as though this were a badge of honour.

Currently, regulation by the Financial Services Authority (FSA) is little to boast about: as reported in the UK media, on 9th October 2007 Sir Callum McCarthy, Head of the FSA, appeared before a House of Commons Treasury Select Committee and was stringently criticised for the failure of the FSA to notice that the bank with the most risky financing  model in the UK (Northern Rock) was a disaster waiting to happen. Media commentators were unimpressed by Sir Callum’s failure to acknowledge the FSA’s own shortcomings and the resultant credit crunch, and by his attempts to pass the buck as a distraction from the FSA’s own failure by his focusing on the now-frosty relations between the discredited tripartite system of financial control (Comment, Tom Stevenson, Daily Telegraph, 10th October 2007).

This being so, Unum’s proud proclamation that it is regulated by the FSA might not amount to much at all.

Importantly for the UK ME/CFS community, the Unum Report provides yet more proof of the incestuous relationship between Wessely School psychiatrists and the insurance industry, a relationship that the parliamentarians who produced the Gibson Inquiry Report of November 2006 were particularly troubled about: “Given the vested interest private medical insurance companies have in ensuring (ME/CFS) remains classified as a psychosocial illness, there is a blatant conflict of interest here. The Group finds this to be an area for serious concern and recommends a full investigation by the appropriate standards body”.

For some reason, the Wessely School and its Unum backers remain impervious to and immune from any such investigation.

The reports of Dr Bass and Professor Wessely are briefly considered here.

Dr Chris Bass was formerly at King’s College Hospital, London, but is now a Consultant in Liaison Psychiatry at the John Radcliffe Hospital, Oxford. Between 1993 and 1997 he was Chairman of the Liaison Psychiatry Section at the Royal College of Psychiatrists. His listed areas of research and clinical interest include patients with persistent medically unexplained physical symptoms and patients with fabricated illnesses. He has edited or co-edited five books since 1990.

His article in the 2007 Unum Report is titled “The Interface between Psychiatric and Physical Disorders” and begins by bemoaning what Bass calls the firewall that he says continues to exist between psychological and physical disorders and services, alleging that the purchasers of healthcare operate as if the firewall was a permanent fixture. Bass then goes on to talk about the “problematic word ‘psychosomatic’”.

“Most physicians are not trained to recognise patients with concurrent physical and psychiatric illness, nor do they realise the impact emotional problems have on the clinical, functional and economic outcomes for these patients”.

“UK newspapers found that the word ‘psychosomatic’ had a perjorative meaning (imaginary or ‘made-up’). Clearly more needs to be done to educate the media to make it attractive to patients”.

“In the last decade high quality research has demonstrated the key role of psychosocial factors in disorders that have previously been conceptualised as ‘medical’, such as Chronic Fatigue Syndrome (CFS)”.

It is notable that the National Institute for Health and Clinical Excellence (NICE) in its recent Guideline on “CFS/ME” classified the psychosocial model of ME/CFS as just one hypothesis among many.

“These so-called ’somatoform disorders’ are the third most common cause of workplace absence, which has forced the government and insurance companies to sit up and take notice”.

“Recent figures have revealed that 70% of individuals in receipt of Incapacity Benefit have non-organic disorders, which in my opinion represents a failure of not only the medical model but also the training of doctors”.

“Hadler, (a rheumatoligist) has pointed out that the key difficulty with fibromyalgia lies in framing the problem as biomedical. Similar processes occur in patients with CFS”.

“These patients with nonorganic complaints are overrepresented in the clinics of alternative practitioners, where they are often provided with explanations for their symptoms that re-inforce a ’somatic’ ailment where none exists. Patients do not need more complementary practitioners peddling non-evidence based medicine treatments – doctors need to be better trained. Regrettably, most physicians continue to be oblivious to the role of illness perception and beliefs in these disorders”.

“Of course, patients do not like to be informed that psychosocial factors are more important than physical ones”.

“Another gross anomaly is the provision of funding of services for patients with ‘non-organic’ disability. What is particularly galling is that the purchasers of healthcare do not appear to understand basic facts”.

“In a recent article, a rheumatologist suggested that by 2050, ‘neurotropic blockers will put an end to the problem of fibromyalgia and myalgic encephalomyelitis’. This is the medical model run riot, and it does not bode well”.

Does the potential development of “neurotropic” blockers open up the possibility of targeted therapeutic interventions, which indeed may not bode well for psychiatrists who deny the existence of the need for such interventions?

Perhaps intentionally, Bass failed to provide the reference for this article from a rheumatologist and has so far failed to respond to several polite emails requesting its provenance.

At this juncture, it may be prudent to reflect on what seems to be the inescapable condescension, complacency and arrogance that permeate this article in the Unum Report: the certainty with which Bass asserts “This is the medical model run riot” seems to indicate a disturbing conviction that his own beliefs about fibromyalgia and ME/CFS are the only correct beliefs. In psychiatry, there is a term for people who believe implicitly that they alone are right in the face of evidence that they are wrong.

Bass continues:
“My impression (carrying out insurance medical exams for the last 10 years) is that some orthopaedic surgeons, rheumatologists and occupational physicians have become aware of the key importance of psychosocial factors in the maintenance of these disorders”.

Is Bass claiming that orthopaedic sequelae (including those that are iatrogenic) are psychosocial? Perhaps he believes that the existence of chronic disorders such as rheumatoid arthritis and lupus are psychosocial also?

This seems to be another example of the Wessely School’s attempts at social engineering, whereby these psychiatrists are intent on discrediting medical disorders and claiming that all illness is simply a behaviour.

To quote once again Peter White’s Preface to the book he edited (”Biopsychosocial Medicine: An integrated approach to understanding illness” OUP 2005):

“Some people believe that medicine is currently travelling up a ‘blind alley’ (and) this ‘blind alley’ is the biomedical approach to healthcare. The biomedical model assumes that ill-health and disability is directly caused by diseases and their pathological processes (but) there is an alternative approach…the biopsychosocial approach is one that incorporates thoughts, feelings, behaviour, their social context and their interactions with pathophysiology”.

Might such a view ultimately lead to the denial of the organic pathoaetiology of all medical disorders and impute on-going disease to an attitude of mind? Even to consider such a possibility is retrogressive in the extreme, and therefore dangerous. For Bass to be promoting this view in the 2007 Unum Report bodes ill indeed for those with disorders for which medicine has not yet discovered the cause or the cure.

Bass finishes his article by referring to a book which he asserts “has been the cause of much cheer” but which others have referred to as “one of the worst in existence and a shameful display of ignorance on the part of its author”

( see “The Mental Health Movement: Persecution of Patients?” M.Hooper et al, available at:
http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm  ).

The book in question is “Whiplash and Other Useful Illnesses” by Andrew Malleson, who was born and brought up in England but who is now a psychiatrist with Toronto University Health Network; he is also psychiatric consultant to the Canadian Government Occupational Health and Safety Agency and has done medico-legal work for over 15 years.

Bass states with apparent satisfaction: “Malleson’s masterly book (2002) has raised the profile of some of the issues raised in this paper”.

For the avoidance of doubt, what Malleson actually said in his book is this:

“Somatizers had dropped neurasthenia like a hot brick. Fatigued somatizers needed a new diagnosis (so) they developed “chronic fatigue syndrome” (CFS) in North America and “myalgic encephalomyelitis” (ME) in the United Kingdom. Chronic fatigue syndrome has gone from strength to strength. At the end of the 1980s, conventional medicine focused on the acquired immunodeficiency syndrome of AIDS. AIDS left its victims in a chronic state of exhaustion. In the typical way that fashionable illnesses have of acquiring serious-sounding pathology, CFS quickly incorporated this concept. The chronically fatigued promptly renamed their illness “chronic fatigue and immune dysfunction syndrome (CFIDS), a condition satisfactorily endowed with all the pathological glamour of AIDS, but respectable.

“Victims of CFS and ME, like the neurasthenics before them, are mostly young to middle-aged women from the middle and professional classes. Epidemics of ME, CFS (and) environmental hypersensitivity do not occur in the industrially underdeveloped countries. Fashions and affluence go together.

“I have used the word ‘victim’ to designate the sufferers of fashionable illnesses. I have done so deliberately, because these sufferers are quick to adopt the victim role. They often see themselves being harmed by members of the medical profession who inflexibly refuse to recognize the validity of their suffering.

“As well-educated members of the middle and professional classes, these victims are often vocal advocates for their own anguish. Victims aim much of their copious literature at the unbelieving doctors and their callous disregard for such illnesses (because) in order to provide compensation or support, insurance companies and government social services require medical validation of the illness.

“Some doctors, perhaps out of a sense of scientific integrity, out of bloody-mindedness, or even, as the claimants for fashionable illnesses sometimes maintain, because of payments from insurance companies, refuse to validate these pseudo-illnesses”.

It seems that in his contribution to the Unum 2007 Report, Bass has served his Unum paymasters well and there is no need to be concerned about the impecunious sick who suffer from ME/CFS and whose benefit payments Unum continues to dispute and deny.

Simon Wessely is Professor of Epidemiological and Liaison Psychiatry at the Institute of Psychiatry, King’s College, London and Honorary Consultant Psychiatrist at King’s and Maudsley Hospitals. He is also Director of the King’s Centre for Military Health Research Unit at King’s College, London. His research interests include chronic fatigue syndrome. He has published over 500 papers.

Wessely’s article in the Unum Report is entitled “Why and When do Doctors Collude with Patients?”. It starts by affirming that doctors do indeed collude with patients, sometimes out of self-interest, but more commonly in the genuine belief that to do so is in the best interests of patients, because “what the patient doesn’t know won’t hurt”.

Does such a view indicate that paternalism in medicine remains alive and well in the UK? How does such a view accord with the Government’s “Expert Patient” initiative, which requires a partnership approach to the management of chronic illness throughout the entire NHS? (”The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century”, published by The Department of Health, reference 25216 1p 10k Sep 01).

Wessely does not mention the terms ME or CFS specifically, but instead says:

“Sometimes a little collusion can go a long way. Take the example of hysteria. Despite being so often described as on the decline, it is instead ‘alive and kicking’. Slater’s view that a diagnosis of hysteria merely reflected ignorance, and that most cases would turn out to have diagnosable disease if they were properly investigated or followed up for long enough, has been repeatedly disproved”.

(Whilst favoured by psychiatrists, such an assertion is not universally accepted by other medical disciplines).

“So when the scans, EEGs and nerve conduction tests are back, and the diagnosis clear, what happens next? Does our ethically trained doctor share this information with the patient? ‘Sir/Madam, there is no neurological reason why you cannot walk. You have what psychiatrists call conversion disorder, but everyone else calls hysteria’. You can bet your bottom dollar that they do not.

“In another study nearly every UK neurologist admitted seeing patients for whom the diagnosis of hysteria and/or conversion disorder was appropriate, but hardly any used that label in front of the patient.

“In one of those papers one wishes one had written oneself, Stone et al (the et al included Wessely’s colleague Michael Sharpe) showed the importance of labels (”What should we say to patients with symptoms unexplained by disease? The ‘number needed to offend’ “. BMJ Dec 21st, 2002). You have to tell 43 patients who cannot walk that they have multiple sclerosis before one becomes offended, a mere 9 if you say it’s ‘functional’ but two is sufficient if you call it hysteria. Let’s hear it for collusion.

“Using labels can trigger a battle of diagnosis, from which the patient themselves is the loser, determined to prove the doctor wrong in the only way possible — by staying ill.

“Finding a label that will not offend the patient whilst enabling them to engage in sensible treatment can be a good strategy. I know a number of neurologists who manage patients whom others might call somatising under a variety of labels such as fibromyalgia.

“Whatever your problem, several establishments near the modern Harley Street have the solution. Every test they do is always positive. They replace hormones that don’t need replacing – giving thyroxine to people with normal thyroid function is currently popular. These medical entrepreneurs have a talent for converting the latest scares into opportunities.

“We don’t see much hypoglycaemia these days, and chronic brucellosis has gone the way of all flesh, but candida, food allergy and multiple chemical sensitivity continue to flourish”.

Wessely’s disdain for suffering humanity is inescapable, and his assertion about brucellosis is curious in the light of what is to be found about brucellosis on PubMed documenting Britain’s biological weapons research programme (EA Willis: Med Confl Surviv.2003 Oct-Dec; 19(4):285-302).

Wessely continues:

“The exact label is not the issue – what is important is that they provide an explanation for the stresses, strains and symptoms of life that avoids any of the possible self-blame, stigma and guilt of those diagnoses that more conventionally minded doctors use.

“Perhaps it is just too painful to realise that the kindly, polite, charming doctor with the smart consulting room, the latest gadgets, and the utter conviction that he or she really does understand the cause of your problems is really giving you things you don’t need for problems you don’t have.

“The swings that you gain on having your complaints listened to are lost on the roundabouts of continuing ill-health and dependency on doctors.

“I doubt there are few occasions in which doctors are more pressurised to collude with their patients (than) when the latter pushes across the desk a form that needs to be signed. If I don’t sign, the chances are they will complain, so it’s anything for the quiet life.

“So doctors collude with their patients all the time. It’s not such a bad thing after all”.

What has happened to respect for the sick and the suffering? What has happened to compassion? What has happened to truth?

Dictatorships are advancing in prosperous societies and are marked by excessive preoccupation with productivity and profit, to the detriment of the weak (in this case, those with ME/CFS). This “freedom” of the strong becomes a factor in the destruction of the weak, because it no longer recognises and respects the truth and shuts out even the most obvious evidence of an objective truth.

On 11th October 2007 a BBC 2 documentary entitled “The Ministry of Truth” revealed that many senior Members of Parliament not only think that there is no need for legislation requiring them not to tell lies in their capacity as an MP and as a Minister of State, but are actually opposed to any such requirement. It seems that many of our senior MPs believe that the honesty and accountability of our democratically-elected representatives are up for grabs.

The programme reminded viewers that it was Peter Mandelson MP, one-time Golden Boy of New Labour, who said: “Our job is to create the truth”.

It has been shown to be the case that New Labour thinkers are indeed preoccupied with “the construction of the truth”. Their portayal of ME/CFS as a mental disorder is but one example.

The imposition of State-approved “truth” will lead to total control of the individual by the State and its officers, with resultant suppression of everything and everyone who refuses to follow State ideology.

Was it not to prevent such repression that two World Wars were fought? Yet here we are in the UK, walking blindfold into such repression, this time within our own nation.

Francis Wheen, in his chapter “The demolition merchants of reality” said: “Even verifiable facts can acquire the dangerous potency of myth in an intellectual climate where equal validity is granted to any interpretation, however perverse. When facts are transmuted into myth for political purposes, they can become lies. The fractured logic of post-modernism leads to the conclusion that any perception of ‘reality’ is as valid as another” (“How Mumbo-Jumbo Conquered the World: A Short History of Modern Delusions”. Harper Perennial, 2004).

The demolition merchants of ME/CFS have turned the facts about ME/CFS into myth.

Why do the charities that are tasked with supporting those with ME/CFS not wake up and take effective action before it finally becomes too late?

It was Francis Bacon (1560 – 1626), one time barrister and member of Grays Inn, Member of Parliament, Solicitor General, Lord Chancellor and Viscount St Alban, who in his Essay “Of Truth”, wrote: “What is truth, said jesting Pilate, and would not stay for an answer”.

Ends

————————————–

I will flag up any additional responses to the PULSE “Need to know” on somatoform disorders feature (10.12.08) and to the PULSE Blog Team commentary (18.12.08)  as they are published.

A NICE DILEMMA? by Margaret Williams, Part Two

A NICE Dilemma? by Margaret Williams  published 15 December 2008

Part Two

Introduction of “Consensus” for CG53

A notable innovation in the production of CG53 was the use of “consensus” by the GDG (said to be because the evidence-base was so poor). By letter dated 26th January 2006, a NICE Communications Executive (Sarita Tamber) confirmed: “With regard to the CFS/ME guideline, because of the lack of evidence it was decided to use formal consensus methods with the GDG. As you are aware, NICE guidelines are based on research evidence but NICE is aware of the lack of evidence on CFS/ME”. Consensus methodology is rigorously defined, but in the case of CG53, NICE decided to use its own “modification” that was specially formulated for this particular Guideline (as confirmed by Dr Mercia Page of NICE in her evidence to the Gibson Inquiry). The person who advised the GDG about the consensus methodology to be used was Professor Rosalind Raine, Professor of Health Services Research at University College, London. Professor Raine’s published views on “CFS/ME” just happen to be that it is a behavioural disorder that should be managed by CBT/GET. Her views are to be found, for example, in the BMJ 2002:325:1082 (“Systematic review of mental health interventions for patients with common somatic symptoms”) and the BMJ 2004:328:1354-1357 (“General practitioners’ perception of CFS and beliefs about its management”).

After reviewing many of the same studies assessed by the York Review team for “CFS”, Raine’s main conclusion in her 2002 paper is that patients in secondary care with chronic fatigue syndrome may benefit from CBT.

In her 2004 paper, CBT was described as “effective clinical management” for chronic fatigue syndrome and she warned that GPs’ perceptions “may be a barrier to mental health approaches“.

The Medical Adviser to the ME Association, Dr Charles Shepherd, was one of the hundred or so respondents in the e BMJ Rapid Responses: “As a doctor who likes to receive balanced information in the BMJ, I was concerned at what appears to be a clear bias by the authors in favour of the psychosomatic explanation for ME/CFS”
(   http://www.bmj.com/cgi/eletters/328/7452/1354#61348  ).

Also in 2004, Raine published “An experimental study of determinants of group judgments in clinical guideline development”, Lancet 2004:364:429-437. It was funded by the MRC, so perhaps unsurprisingly, “cognitive behavioural therapy, behavioural therapy, psychodynamic interpersonal therapy, and antidepressants for irritable bowel syndrome and chronic fatigue syndrome were selected for study”.

Raine explains in this article that CBT “is provided by CBT therapists who aim to modify thoughts and beliefs with the expectation that emotional and behavioural changes will follow” and that behavioural therapies focus on “the modification of behaviour to positively reinforce healthy behaviours” which “emphasise the role that social factors can play in the development and maintenance of functional somatic complaints. The goal is to identify and reinforce ‘well’ behaviours while reducing reinforcement for somatic behaviours eg. excessive diagnostic testing or restricting mobility”.