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  

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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

The WHO Somatisation Project [CISSD Project]: The Elephant in the Room Part Nine

elephant2

Image | belgianchocolate | Creative Commons

The Elephant in the Room Part Nine

The CISSD Project

A call for transparency from Action for ME: Part Nine

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

[This report may be republished as long as it is republished in its entirety, unchanged and with the author and source acknowledged. Note that embedded links may drop out.]

 

 

 

http://tinyurl.com/elephantpartnine

This report is in two parts: it contains brief information around the revision process towards DSM-V and an update on the sources of funding for the co-ordination of the international CISSD Project.

“Harmonization” between ICD-11 mental and behavioural disorders and DSM-V

The American Psychiatric Association (APA) published the Diagnostic and Statistical Manual for Mental Disorders: Fourth Edition [DSM-IV] in 1994, with a text revision in 2000.  The next edition, DSM-V, is not scheduled for publication until 2012.

Planning for this fifth revision began in 1999 with a collaboration between the APA and the US National Institute of Mental Health (NIMH).  The Revision Process is headed up by former NIMH staff and funded by NIMH grants. In early 2000, Darrel A. Regier, M.D., was recruited from the NIMH to serve as research director for the APA and co-ordinator for the development of DSM-V.

The APA participates with the World Health Organisation (WHO) in a DSM/ICD Harmonization Coordination Group. The aim of this group is to “facilitate uniformity and harmonization” between ICD-11 mental and behavioural disorders and DSM-V.  The final, approved DSM-V is expected in May 2012.

See WHO document:  Summary Report of the 3rd Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, 11 – 12 March, 2008

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

The DSM revision has been a complex and controversial process: it has been criticised in the US by members of the medical profession, medical writers and advocacy groups around perceived lack of transparency over its development, the potential for conflicts of interest in its advisers and those appointed to its task force, work groups and study groups, and around potential inclusions of new and controversial “disorders”. [1]

There are significant concerns over the implications for potential revisions to DSM of specific categories like “Somatoform Disorders” and “somatic presentations of mental disorders” amongst UK and US CFS, ME, FM, IBS, GWS, CI, CS and SBS patient communities.

In November 2008, in an opinion piece for the Los Angeles Times, Christopher Lane, Professor of English, Northwestern University, Illinois wrote:

“Not only do mental health professionals use it routinely when treating patients, but the DSM is also a bible of sorts for insurance companies deciding what disorders to cover, as well as for clinicians, courts, prisons, pharmaceutical companies and agencies that regulate drugs. Because large numbers of countries, including the United States, treat the DSM as gospel, it’s no exaggeration to say that minor changes and additions have powerful ripple effects on mental health diagnoses around the world.” Los Angeles Times

DSM-V work groups have been meeting since late 2007. In May 2008, the APA released the names of the appointees to the 13 work groups reviewing all existing diagnostic categories in DSM-IV:

See: APA document: Press release: 1 May 2008

http://www.psych.org/MainMenu/Newsroom/NewsReleases/2008NewsReleases/dsmwg.aspx

These 13 groups are working towards proposals for the revision of existing disorder criteria, the inclusion of new disorders, or no changes to a disorder or its criteria. Work groups may also propose revisions to the text accompanying the criteria for each disorder. They may also commission literature reviews and develop research plans for field trials.  The work groups are composed of more than 120 scientific researchers and clinicians.

The 13 DSM Revision Process Work Groups are:

ADHD and Disruptive Behavior Disorders

Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic, and Dissociative Disorders

Disorders in Childhood and Adolescence

Eating Disorders

Mood Disorders

Neurocognitive Disorders

Neurodevelopmental Disorders

Personality and Personality Disorders

Psychotic Disorders

Sexual and Gender Identity Disorders

Sleep-Wake Disorders

Somatic Distress Disorders

Substance-Related Disorders

The progress of the work group we need to monitor is the DSM-V workgroup on “Somatic Distress Disorders”.

Individual work groups build on recommendations resulting out of 13 conferences which were held internationally between 2004 and 2008, conducted by the APA’s American Psychiatric Institute for Research and Education (APIRE) and funded by US National Institute of Health (NIH) grants. According to the APA’s website:

“In each conference, participants wrote papers addressing specific diagnostic questions, based on a review of the literature, and from these papers and the conference proceedings, a research agenda was developed on the topic. The results of seven of these conferences have been published to date in peer-reviewed journals or American Psychiatric Publishing, Inc. (APPI) monographs, with the remainder of the publications anticipated in 2008. Findings from all 13 conferences are immediately available to serve as a substantial contribution to the research base for the DSM-V Task Force and Work Groups, and for the WHO as it develops revisions of the International Classification of Diseases.

See: APA document: DSM-V: The Future Manual http://www.psych.org/dsmv.asp

In September 2006, in collaboration with the WHO and NIH, the APA convened a diagnosis-related research planning conference focusing on “Somatic presentations of mental disorders” in Beijing, China. Amongst those presenting at the Beijing Symposium were:

Ricardo Araya (Bristol, UK); Simon Wessely (KCL, London); Javier Escobar (US)*; Richard Mayou (Oxford, UK); Michael Sharpe (Edinburgh); Winfried Rief (Germany) and Kurt Kroenke (Indianapolis, US).  *Javier Escobar is also a member of the APA Revision Process Task Force

Those highlighted in blue were, at the time, all members of the CISSD Project work group, with Professors Kurt Kroenke and Michael Sharpe serving as the CISSD Project’s international and UK chairs.

An editorial and selected papers based on the Beijing Symposium presentations were published in the Journal of Psychosomatic Medicine 69:827–828 (2007) November/December 2007, Volume 69, 9

These are subscription papers but summaries of the presentations and recommendations (at the end of the document) can be read on the website of the American Psychiatric Association here.  The Journal Editorial is free and can be accessed here

APA’s DSM-V Work Group on “Somatic Distress Disorders”

See APA webpage: Somatic Distress Disorder Work Group for biosketches and disclosure information for each of the Somatic Distress Disorder Work Group members.  (Note Prof Michael Sharpe’s work for UNUM during the period he was serving as UK Chair of the CISSD Project.)

Under the chair of Professor Joel E. Dimsdale, M.D., the nine members of the APA’s Somatic Distress Disorders Work Group are:

Arthur J. Barsky, M.D.; Francis Creed, M.D.; Nancy Frasure-Smith, Ph.D.; Michael R. Irwin, M.D.; Francis J. Keefe, Ph.D.; Sing Lee, M.D.; James L. Levenson, M.D.; Michael Sharpe, M.D.; Lawson R. Wulsin, M.D.

APA DSM Work Groups have been meeting since late 2007. Four out of ten members of the APA’s Somatic Distress Disorders Work Group (highlighted above in blue) were also members of the CISSD Project work group, and in the case of Prof Michael Sharpe, served as the CISSD Project’s UK Chair.

A brief report (Nov ’08) of the APA’s DSM-V Somatic Distress Disorders Work Group can be read here:

http://tinyurl.com/somaticwgreport08

 

CISSD Project work group:

Professor Francis Creed (APA DSM Work Group member; CISSD Project member) is the Editor of the Journal of Psychosomatic Research. 

In April 2006, papers by CISSD Project members, Levenson, Bradfield, Creed, Kroenke, Sykes, Hiller, De Gucht and Sharpe, resulting out of the proceedings of the CISSD’s first UK 2005 workshop, were published in the Journal of Psychosomatic Research [J Psychosom Res 2006; 60:325-356].

In June 2006, Dr Sykes also had a brief report published in the Journal of Psychosomatic Research; this brief update on the progress of the CISSD Project was published in the name of Dr Sykes, only.

The draft report of the CISSD project, RD Sykes [J Psychosom Res 2006; 60: Issue 6: 663-664]  http://www.jpsychores.com/issues/contents?issue_key=S0022-3999%2806%29X0365-3

These papers were followed in July 2007, by the publication of the CISSD Project’s Review paper: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations by CISSD Project leads, Kurt Kroenke, Michael Sharpe and Richard Sykes, in the Journal of Psychosomatics [Psychosomatics 48:277-285, July-August 2007].

Free full text in html and PDF at: http://psy.psychiatryonline.org/cgi/content/full/48/4/277

By September 2006, with several CISSD papers already published, Dr Sykes was on the conference circuit (Dubrovnic) presenting on themes around the CISSD Project, vis “Plenary Symposium 7: Conceptual Issues in Somatoform and Similar Disorders” in which Dr Sykes presented on “Somatoform Disorders: What are patients’ concerns and do they matter?” and “Emerging proposals from the CISSD Project”. The APA’s China Symposium had taken place a couple of weeks before the Dubrovnic Symposium, on September 6-8, 2006. Although five members of the CISSD Project presented at this APA Symposium, Dr Sykes would not appear to have done so.

I shall be posting further links and material around the APA Revision Process, the CISSD Project, its members and their interests. 

[At the time of publishing, Dr Richard Sykes had not responded to my email of 11 February.  I have since received a response. On 26 February, I wrote again to Dr Sykes with my concerns for Action for M.E.'s lack of transparency around the CISSD Project. I also requested clarification in relation to current ICD-10 classifications in the context of the CISSD Project, and asked questions concerning the Project's administration.]

A copy of the concerns and questions raised with Dr Sykes has now been sent to Sir Peter Spencer, CEO Action for M.E.; The Countess of Mar; Dr Charles Shepherd, Mr Neil Riley, ME Association; Ms Jane Colby, The Young ME Sufferers Trust; Dr Vance Spence, ME Research UK; Dr Byron Hyde, The Nightingale Foundation; Dr Derek Enlander.

An update on the sources of funding for the co-ordination of the CISSD Project

In The Elephant in the Room Part Seven I had set out responses from Mr Nick Boatwright, Action for M.E.’s Finance Manager. I considered that the information Mr Boatwright had given me required further clarification.  Additional information was provided to me, yesterday. [Information that Action for M.E. had already given in a previous communication, and reported in Part Seven, has been greyed out.]

Mr Boatwright stated that:

Action for M.E. received no funds from the Wellcome Trust, which funded the project separately

The project was initiated under Westcare. When Action for M.E. merged with Westcare in 2002, it was agreed in handover negotiations that Richard Sykes would go ahead with the project

Action for M.E.’s involvement was limited to administering part of the funding, for which [AfME] received one retrospective payment of £1750 (equivalent £350 per year) in administration fees

Action for M.E. did not gain financially in any other way

The project was co-ordinated by Richard Sykes and there were no expectations or obligations on the charity to undertake any aspects of the work for which he as project co-ordinator was funded

The project’s findings were published in an article, Revising the classification of somatoform disorders, by Kroenke, Sharpe and Sykes, in Psychomatics, July/August 2007, 48:277-285

and that if I had any further enquiries would I please contact Richard Sykes, as previously suggested.

———————–

It must therefore be the case that all three grants recorded in Action for ME’s Report and Accounts for

year ending March 06 for £24,000

year ending March 07 for £18,750

year ending March 08 for £20,000

were provided by The Hugh and Ruby Sykes Charitable Trust.*

*Since his earlier communication, today, Action for M.E.’s Finance Manager has confirmed this is correct.

Mr Boatwright has left hanging my question whether and when Action for M.E. intends to issue a statement or publish a report or summary setting out what the aims and objectives of the CISSD Project were, where the funding came from and the basis for its involvement in the project.

How much additional funding was provided by Wellcome, administered by the University of Edinburgh, in relation to the CISSD Project, and for what purpose, has still to be established.

———————

On 18 February, I had already submitted a request for information under the Freedom of Information Act to the Records Management Section, University of Edinburgh in anticipation that this information might not be forthcoming from Action for M.E.

While waiting on this FOI request to be fulfilled, I have obtained copies of spreadsheets for Wellcome Trust Grants Awards for years 2000 to 2008.

The Awards document for 2004-2005, records that during this financial period, the Wellcome Trust made the following grant to Professor Michael Sharpe:

Awarded 1 October 2004 – 30 September 2005

University of Edinburgh Department of Psychiatry Royal Edinburgh Hospital

Grant type  SYMPOSIUM

Key conceptual issues in the classification of somatoform and similar disorders: some outline proposals for a revised classification.

Grant number
077740/Z/05/Z

Applicant: Dr Michael C Sharpe   No Co-applicants   I month duration    £4,950

———————

In his email of 7 February, Professor Sharpe had told me that he had no knowledge of any grants relating to CISSD and Action for ME and suggested I contact Dr Richard Sykes. As Professor Sharpe did not mention the Wellcome Trust grant, it is not yet known whether this funding was for Professor Sharpe, himself, in relation to the Project or for the use of Dr Richard Sykes – nor is it clear which specific symposium this award relates to.

 

———————

In relation to the funding for which Action for M.E. acted as administrators, the Report and Accounts stated that the grants had been “provided to help lobby the World Health Organisation for the recognition of M.E. and its recategorisation as a physical illness.”

What does Action for M.E. understand by this statement?

Mr Boatwright has said: “The project was co-ordinated by Richard Sykes and there were no expectations or obligations on the charity to undertake any aspects of the work for which he as project co-ordinator was funded.”

But Action for ME has assisted in the facilitation of Dr Sykes’ Project and received a fee for administration duties.  Action for M.E. presented the CISSD Project to its membership as the “WHO Somatisation Project”; it does not mention the APA or the DSM Revision Process; nor does it mention, specifically, the congruence or “harmonization” process between APA DSM-V and WHO ICD-11.

Why has Action for M.E. sought to obscure the existence of the Project’s co-ordinator and of the 25 person Work Group and the DSM Revision Process that the Project fed into?

Why has Action for M.E not set out how the CISSD Project relates to the APA’s DSM Revision Process, in general, and to the APA’s DSM-V workgroup on Somatic Distress Disorders, in particular?

 

The CISSD Project fed into the far wider, complex and ongoing APA DSM Revision Process of which the section: Somatic Distress Disorders is just one of 13 disorder areas for potential revision. The review paper published by the lead CISSD Project group members was APA/DSM-centric – there is barely a reference to the WHO in the text.

Dr Sykes has said: “The CISSD project (Conceptual Issues in Somatoform and Similar Disorders) started from a personal concern about the problems arising from the fact that CFS or CFS/ME has not yet been officially classified by the World Health Organization (although this is not always appreciated).”

But no reference is made within the CISSD review paper to the existing classification of Myalgic encephalomyelitis and Chronic fatigue syndrome within ICD-10, and there is no discussion around this. This appears a remarkable omission.

Dr Sykes’ use of the term “CFS/ME” is noted. The WHO does not use this conflation; there is no WHO classification or ICD code for “CFS/ME”. There can be no dual classification in ICD for diseases.

It is not possible, then, to contextualise the current WHO ICD-10 indexing of Myalgic encephalomyelitis and the current WHO ICD-10 indexing of Chronic fatigue syndrome in relation to current DSM taxonomy, nor in relation to recommendations made by the CISSD Project towards DSM revision, or beyond, to recommendations being developed through the APA’s own “Somatic Distress Disorders” Work Group towards DSM-V and towards “ICD/DSM harmonization” because neither of these ICD classifications are mentioned at all in the review paper.

According to the WHO, the task of the “ICD-DSM Harmonization 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.”

But Benign myalgic encephalomyelitis; Postviral fatigue syndrome; Chronic fatigue syndrome are all classified in ICD-10 under the rubric: Diseases of the nervous system (G00-G99) and indexed at (G93.3) not classified under ICD-10: Mental and behavioural disorders (F00-F99).

1] Dr Sykes has been asked to provide an explanation for his statement: “CFS or CFS/ME has not yet been officially classified by the World Health Organization (although this is not always appreciated).”

2] Dr Sykes has been asked to confirm whether the work of the CISSD Project and the review paper that resulted out of it has been undertaken on the premise that Chronic fatigue syndrome had not been classified by the WHO?

3] Dr Sykes has been asked if he would clarify that when using the term “chronic fatigue syndrome” in the context of so-called “functional somatic syndromes” in the CISSD review paper, whether the CISSD Project leads are referring to Fatigue syndrome (F48.0) under ICD-10: Mental and behavioural disorders (F00-F99), or to any or all of the following: Benign myalgic encephalomyelitis, Postviral fatigue syndrome, Chronic fatigue syndrome all of which are classified in ICD-10 at G93.3 under the rubric: Diseases of the nervous system (G00-G99) and not under ICD-10: Mental and behavioural disorders (F00-F99)?

 

Dr Sykes has also been asked to provide responses for the following queries which relate to the administration of the CISSD Project:

1] Four members of the CISSD Project Work Group are members of the APA’s “Somatic Distress Disorders Work Group”.

Dr Sykes has written, “From modest beginnings as an unofficial project with a very limited budget, the project developed into a high calibre enterprise which succeeded in recruiting many of the leading experts in the field. Its achievements include the publication of several articles in medical journals and a published final report, in which several recommendations are made and some key issues are highlighted for further consideration.”.

What was the status of the relationship between the CISSD Project Work Group and the APA’s DSM Revision Process and DSM-V Work Group on Somatic Distress Disorders during the life of the Project; that is, was the Project commissioned by the APA at any point during its life to function as a reference or advisory or research group or otherwise called upon to act in a consultative capacity to the APA?

2] As an “Honorary Member”, what is Dr Richard Sykes’ relationship with the WHO Collaborating Centre, Institute of Psychiatry, and from when does this relationship date?

3] Prof Rachel Jenkins is listed as “Principal Collaborator” for the CISSD Project. What has been the WHO Collaborating Centre’s involvement with the CISSD Project since the Project’s inception?

[Professor David Goldberg, Professor Emeritus of King's College London, Institute of Psychology, was a member of the UK National Editorial Team for the WHO "Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version". It was this version of the guideline where classifications around CF, CFS, PVFS and ME were contested by UK ME advocates and for which the intervention of the WHO, Geneva was sought. Prof Goldberg is involved in the revision process for WHO ICD Mental and Behavioural Disorders. He is also a member of the APA's DSM Mood Disorders Work Group.]

4] By what date was the CISSD Project Work Group assembled and through what process were potential Work Group members appointed?

5] Who was responsible for the appointment of the Project’s UK and international chairs?

6] Did members of the Work Group and chairs receive any remuneration or expenses for their services in relation to the carrying out of their work?

7] Were Terms of Reference and Principles drawn up for Project Work Group members and chairs and would you make copies available to me?

8] Were Project Work Group members and chairs required to complete Conflict of Interest Disclosures and would you make copies available to me?

9] It is understood that in addition to the three tranches of funding administered by Action for M.E. that additional funding had been provided in relation to the Project by The Wellcome Trust, administered by the University of Edinburgh. What was the total amount of funding provided by The Wellcome Trust and for what purpose was it provided?

10] Are there any additional sources of funding for Dr Sykes’ work in relation to the Project or to facilitate the three Project Workshop meetings held in the UK in 2005 and in Indianapolis, in 2006, or provided in relation to any other aspect of the Project which are yet to be disclosed?

11] Were interim reports and/or a final report submitted to The Wellcome Trust/University of Edinburgh, and to Action for M.E., as administrators, and would you make copies available to me?

12] Was any report submitted to the WHO Geneva or to the ICD-DSM Harmonization Group or to the WHO Collaborating Centre, other than the published Review Paper, and would you make copies available to me?

13] In September 2006, in collaboration with the WHO and NIH, the APA convened a diagnosis-related research planning conference focusing on “somatic presentations of mental disorders” in Beijing. Amongst those presenting at the Beijing Symposium were five members of the CISSD Project Work Group: J Escobar; R Mayou; M Sharpe; W Rief and K Kroenke. Were any of these presentations given in the name of the CISSD Project?

14] The July 2006 paper: The draft report of the CISSD project, Sykes RD, states that the main recommendations of the CISSD report would be presented at a meeting. To which meeting or conference does this refer and who gave the presentation? Could PowerPoint slides be made available to me?

[1] Psychiatric Times: 1 January 09, Vol. 26 No. 1: DSM-V Controversies, Arline Kaplan http://www.psychiatrictimes.com/display/article/10168/1364926?pageNumber=1

To be continued

Compiled by Suzy Chapman

The URL for The Elephant in the Room Part Nine is:

http://meagenda.wordpress.com/2009/02/24/the-who-somatisation-project-cissd-project-the-elephant-in-the-room-part-nine/

or  http://tinyurl.com/elephantpartnine

Previous reports:

The Elephant in the Room Part One

The Elephant in the Room Part Two

The Elephant in the Room Part Three

The Elephant in the Room Part Four

The Elephant in the Room Part Five

The Elephant in the Room Part Six

The Elephant in the Room Part Seven

The Elephant in the Room Part Eight

Published: 24/02/09
Updated: 24/02/09: Confirmation of source of funding.
Updated: 25/02/09: Additions: URL, Editorial, J Psychosomatic Medicine 2007, APA Beijing Symposium; URL, Report, DSM-V Somatic Distress Disorders Work Group, Nov 08.
Updated: 28/02/09: Edited to incorporate questions raised with Dr Richard Sykes.

RiME: New website and domain name

Campaigning for Research into ME (RiME)

RiME’s New Updated Website is at www.rime.me.uk

New items are:

MPs Referendum on ME Research

Newsletter 10

APPG Meeting Oct. 2008

Letters Jan. – July 2008

Shortly we will be adding to the clinics folders. This work is in preparation for the Services Inquiry. We welcome people’s views on local services.

Because of increased support for RiME, it is becoming increasingly difficult to reply to all communications in good time. If you raised a point which you feel needs an answer, please try again.

Paul Davis

rimexx@tiscali.co.uk

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.

MEA: Judicial Review: Summary of High Court proceedings

Dr Charles Shepherd, Medical Adviser to the ME Association has published a summary of the Judicial Review High Court Proceedings

ME Association | 15 February 2009 | Dr Charles Shepherd

Judicial Review – summary of High Court proceedings

The Judicial Review of the NICE guideline on ME/CFS took place on Wednesday and Thursday, 11th and 12th February, at the Royal Courts of Justice in London. The hearing was held in Court 76 – a large modernised courtroom tucked away on the third floor of this historic maze of legal activity.

Unlike the preliminary hearing in June last year, there was plenty of room to move around along with comfortable non-squeaking seats and wheelchair access – although it was difficult at times for those at the back to hear precisely what was being said by barristers representing the two sides.

Around 50 members of the public, along with occasional brief visits from journalists, packed Court 76 to witness the proceedings. At times, a ‘Court Full’ sign had to be posted up. Not surprisingly, there did not appear to be a single person with ME/CFS who had come up to London to support the NICE guideline.

Outside the main entrance in The Strand, where all the TV news bulletin shots of the High Court are taken, a small peaceful demonstration against the NICE guideline took place over lunch. This managed to attract quite a lot of legal and public interest.

Almost all of Wednesday was taken up with a legal presentation from barrister Jeremy Hyam on behalf of the two claimants who suffer from ME – Kevin Short from Norfolk and Douglas Fraser from London.

In relation to the effects of the NICE guideline on practical patient care, two key issues were examined:

Firstly, the procedures by which the NICE guideline development group (GDG) had come to the conclusion that the only treatments worth recommending for people with ME/CFS were two behavioural interventions, namely cognitive behaviour therapy (CBT) and graded exercise therapy (GET), and this was to the exclusion of all others.

Secondly, the fact that a number of medical/drug and supplement interventions, which may be helpful in selected cases, were not therefore being recommended by NICE. As a result of not being recommended, doctors would not be willing to consider using them, and healthcare providers (ie PCTs) would not be willing to pay for them. Some people with ME/CFS would therefore be denied forms of treatment that could be of benefit.

In relation to the way in which a judicial review is there to examine procedures rather than actual decisions, it was argued that the decision making process had been based on a foundation of insufficient evidence of clear benefit being available to recommend the widespread use of CBT and GET. In particular, was the way in which a systematic review of results from randomised controlled trials involving CBT and GET (ie the York Review) had failed to demonstrate the sort of robust consistent evidence that could stand alone and satisfy the requirements for this type of recommendation to be made in a NICE guideline. Counsel for the claimants also argued that insufficient weight had then been given to certain other key sources of evidence further down the hierarchy of evidence that were made available to the guideline development group – in particular the results of patient questionnaires and stakeholder feedback which had reported that in a significant proportion of people with ME/CFS these treatments were either ineffective or even harmful.

When it came to the final analysis it was argued that with several members of the GDG being involved in clinical trails involving these two treatments, or expressing support for their use, there was an appearance of bias in the way that the GDG decided to recommend CBT and GET as the only forms of effective treatment. To support the appearance of bias reference was made to comments contained in a letter from a patient representative on the GDG (Tanya Harrison) who had resigned from the group as a result of what she believed was bias towards the psychosocial model. It was also argued that the appearance of bias towards CBT and GET was compounded by the absence of any health professionals on the GDG who were known to be in favour of the biomedical model of ME/CFS

The final part of the first day’s hearing, and almost all of Thursday morning, was taken up by counter arguments being presented by the barrister representing NICE, namely that the research evidence in favour of CBT and GET was sufficiently robust; that the process of collecting and analysing other types of evidence from clinical trials, stakeholders, experience of clinicians etc was thorough and transparent; and that no evidence of bias towards the psychosocial model had been shown by individual members of the GDG. Neither was there any bias in the way in which the members of the GDG were selected by nomination of the relevant Royal Colleges or professional bodies, and some of the accusations relating to bias, conflict of interest, or disclosure of interest were based on factual inaccuracies. In other words, the procedures that were followed by NICE were as robust and fair as could be achieved in the circumstances and that the decision to only recommend CBT and GET was not the result of any bias on the part of individual members of the GDG, or the group as a whole. Legal arguments on behalf of the defendants (ie NICE) went on till early afternoon on Thursday.

Thursday afternoon produced a further legal argument involving the cost effectiveness of both treatments. This was given by a barrister acting for an ‘interested party’ in the case against NICE. Evidence was put forward on behalf of this interested party to show that the cost effective analysis for CBT was seriously flawed and that no proper cost effectiveness analysis for GET had even been undertaken. In other words, it was claimed that NICE was recommending two forms of treatment that had not yet been properly shown to be cost effective. Again, this position was vigorously challenged by the barrister representing NICE.

A great deal of time was spent in discussing the points that are summarised above, along with legal technicalities. However, some of the other aspects of the case against the NICE guideline, which have surfaced in public discussion on the internet prior to the case being heard in Court, were not referred to or left very much out on the periphery (eg neurological classification of the illness).

Legal arguments and discussion went on till almost 5pm on Thursday and there is still some unfinished business for the Judge, Mr Justice Simon, to deal with. So it looks as though the Judge’s decision on the case will be delayed for at least a week, possibly even longer.

a  The ME Association has fully supported the case for Judicial Review that has been made by the two claimants – see here
b  A summary of press reports on the Judicial Review can be found here
c  For anyone involved with insurance companies referred to during the hearing – Exeter Friendly Society and Liverpool Victoria – some interesting and useful statements regarding their positions on recognition and classification of ME/CFS were made during the hearing.

Summary prepared by Dr Charles Shepherd

14 February 2009

The WHO Somatisation Project [CISSD Project]: The Elephant in the Room Part Eight

elephant3

Image | belgianchocolate | Creative Commons

The Elephant in the Room Part Eight

The WHO Somatisation Project [CISSD Project]

A call for transparency from Action for ME: Part Eight

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

[This report may be republished as long as it is republished in its entirety, unchanged and with the author and source acknowledged. Note that embedded links may drop out.]

In The Elephant in the Room Part Seven I set out responses received on 11 February from Action for M.E.’s Finance Manager, Mr Nick Boatwright. In his response, Mr Boatwright had stated that “the work was supported by grants from the Wellcome Trust, administered by the University of Edinburgh and from the Hugh and Ruby Sykes Charitable Trust, administered by Action for M.E.”

Mr Boatwright also told me that “when Action for M.E. merged with Westcare in 2002, it was agreed in handover negotiations that Richard Sykes would go ahead with the [CISSD] project”, that the project had been initiated by Dr Sykes and undertaken between 2003 and 2007. It isn’t clear whether any funding for the work was provided prior to 2005-2006, when a grant in the name of the Project is first recorded in Action for M.E.’s accounts; or whether both of the two grants recorded in the accounts with no source specified had been provided by the Wellcome Trust; further clarification has been requested.

Prior to Action for M.E.’s engulfing of Westcare, in 2002, there had already been a stream of funding trickling from the Wellcome Trust to Westcare. In both accounting periods for year ending 2001 and year ending 2002, Westcare had received £5000 from the Wellcome Trust. So a previously established funding stream between the Wellcome Trust and Westcare, of which Dr Richard Sykes had been Director was later strengthened, after Westcare had ceased to operate, when the Wellcome Trust provided funding for Dr Sykes in relation to the CISSD Project. 

It has not yet been established at what point Dr Sykes became an “Honorary Member” of the WHO Collaborating Centre, Institute of Psychiatry, London, what this title confers and what it involves or how it relates to the CISSD Project but Dr Sykes has been associated with the WHO Collaborating Centre since at least 2005. There is a short bio for Dr Sykes on the WHO Collaborating Centre’s website which makes reference to his co-ordination of the CISSD Project. Professor Rachel Jenkins, Director of the WHO Collaborating Centre, was Principal Collaborator for the Project.

See: http://www.iop.kcl.ac.uk/departments/?locator=430&context=926

Although Action for M.E. has had a five year association with this international Project and has been responsible for the administration of funding, it has published only very scant information for its membership and the wider public about the Project, itself, and its own relationship to the Project. The sum total that Action for M.E. has published has been via a few lines in its Reports and Accounts and amounts to this:

WHO Somatisation Project. This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its recategorisation as a physical illness. This grant ceased in March 2007.”

CISSD Project  This grant, from the Hugh and Ruby Sykes Charitable Trust is provided to disseminate the findings of the WHO Somatisation Project whose research came to an end in 2006. The aim is to produce a number of recommendations which, if accepted by the World Health Organisation, would be of direct benefit to people with M.E.”

The statement: “This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its recategorisation as a physical illness.” is confusing because ME has already been recognised as a neurological illness by the WHO since 1969 and is classified in ICD-10 at G93.3. So there is a lack of clarity, here, about which classification system is being referred to and why Action for M.E. appeared to consider that “lobbying” the WHO for the recognition of ME was necessary, and why funding of £62,750 has been required to facilitate this.

The statement conveys the impression that Action for M.E. owned the Project and that the “lobbying” of the WHO was being carried out by Action for M.E. Whereas, in reality, the funding had been provided to facilitate Dr Sykes’ involvement with a project with a far broader remit, the aim of which was to present recommendations to the World Health Organisation and the American Psychiatric Association for the revision of current classifications in the International Classification of Diseases and the Diagnostic and Statistical Manual (ICD-10 and DSM-IV) in advance of ICD-11 and DSM-V, in 2012, and “to stimulate a multidisciplinary dialogue about the taxonomy of somatoform disorders and the medical diagnoses of functional somatic syndromes (e.g., irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia)”.

And rather than Action for M.E. undertaking “lobbying” of the WHO as an organisation, on behalf of its membership, the Project was the concept of Dr Richard Sykes who was co-ordinating an international work-group of around two dozen members, which included Kurt Kroenke, Michael Sharpe, Francis Creed, Charles Engel, Richard Mayou and Michael Trimble – a committee whose existence simply isn’t evident from Action for M.E.’s vague and sketchy description of the Project.   And nor was it clear where the first £42,750 of funding had come from.

The second statement from the 2008 Accounts now uses the formal name – the “CISSD Project”. But Action for M.E. still gives no information about who owned this Project, who had been responsible for undertaking “the research which came to an end in 2006″ or who would be carrying out the “dissemination of the findings”, or through what means. Nor is it clear who was going to be responsible for “producing a number of recommendations” to the WHO. Again, it is not evident what the remit of the Project had been, or that an international committee had undertaken the Project under the co-ordination of Dr Richard Sykes (who is not an employee or contract member of staff of Action for M.E), nor what Action for M.E’s relationship to the Project had been or what tasks the organisation had undertaken, itself, in the name of the Project.

Why did Action for M.E. choose to publish nothing in its magazine or on its website about this Project?

Why has it never set out what the aims and objectives of the twenty five member Work-Group were?

Why has it never explained to its members precisely what role the organisation has played in the Project’s facilitation, or the basis on which the funding was obtained, or to whom Dr Richard Sykes has been accountable throughout the life of the Project and his relationship with the WHO Collaborating Centre, or that Dr Sykes was even involved, at all?

Behind the screen of a “lobbying the WHO” exercise with funds of £62,750 around which Action for M.E. appears to have devoted three years of work for the benefit of people with M.E. sits a twenty five person committee headed up by Professor Kurt Kroenke and Professor Michael Sharpe.

There remains considerable concern and unease amongst the ME community – members and non members of Action for M.E. alike, about the aims of this Project; the interests and backgrounds of the members of its Work-Group and its Chairs; its relationship with the DSM Revision Process being undertaken by the American Psychiatric Association towards harmonisation between ICD-11 mental and behavioural disorders and DSM-V; its links with the APA’s DSM-V Somatic Distress Disorders Work-Group; the implications for the ME community and beyond of the Project’s work and its recommendations for the future revision of ICD and DSM, and for the web of obfuscation that Action for M.E. has spun around this Project since its inception.

I have asked Sir Peter Spencer (CEO, Action for M.E.): Does Action for M.E. intend to respond to public and individual calls to publish a full report on the CISSD Project, his organisation’s involvement with it and the implications of the work Dr Sykes’ committee has undertaken in the name of the Project?

I have still received no response from Dr Sykes. However, in October 2008, Dr Sykes had provided another member of the ME community with a brief summary of his involvement with the CISSD Project which I publish, below, with permission. This summary should not be considered as a substitute for a response from Dr Sykes nor for the publication of a full report from Action for M.E. It should be read in conjunction with the review paper, below, published by the CISSD Project leads in July 2007:

Review Articles: Psychosomatics 48:4, July-August 2007

Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations, Kurt Kroenke, M.D., Michael Sharpe, M.D., and Richard Sykes, Ph.D.

Full paper in PDF format: http://psy.psychiatryonline.org/cgi/reprint/48/4/277.pdf

Full paper in html format: http://psy.psychiatryonline.org/cgi/content/full/48/4/277

In MEActionUK@yahoogroups.com, “connie” wrote:

From: Richard Sykes

To: ‘connie’

Sent: Friday, October 10, 2008 3:58 PM

Subject: RE: WHO Somatisation Project – Conceptual Issues in Somatoform and Similar Disorders

Posted with Permission

“Richard Sykes became involved with setting up the charity Westcare UK, now merged with AfME, with the 1993 Task Force on CFS/ME and with the CISSD project, because he thought that people with CFS/ME were not getting a fair deal and that there was much confused thinking in this area. That is why he is still working in this field. While he personally would have liked the recommendations of the CISSD project to have gone further than they did, they are a fair reflection of the discussions held and represent substantial progress in the thinking of many psychiatrists. He is optimistic that further progress will come,”

The CISSD Project – Summary of Report to AfME from Richard Sykes

The CISSD project (Conceptual Issues in Somatoform and Similar Disorders) started from a personal concern about the problems arising from the fact that CFS or CFS/ME has not yet been officially classified by the World Health Organization (although this is not always appreciated). As a result some psychiatrists and others have claimed that CFS should be considered and classified as a Mental Disorder, specifically as a Somatoform Disorder. This claim has caused great difficulties in doctor-patient communication.

Somatoform Disorders are a category of Mental Disorders, used mainly by psychiatrists, that are characterized by medically unexplained physical symptoms. There are, however, many systematic difficulties with the category. An appreciation of these difficulties led to the idea of a project that would investigate the whole field of Somatoform Disorders, rather than just CFS alone. The project would be international and interdisciplinary, open to all with a professional interest in the field and designed to explore difficulties on a collaborative and open basis, rather than to promote a particular point of view.

The project operated from 2003 to 2007. From modest beginnings as an unofficial project with a very limited budget, the project developed into a high calibre enterprise which succeeded in recruiting many of the leading experts in the field. Its achievements include the publication of several articles in medical journals and a published final report, in which several recommendations are made and some key issues are highlighted for further consideration.

Some of these recommendations and key issues are very relevant and important for CFS. For example, one recommendation is that the category of Undifferentiated Somatoform Disorder be deleted. This is the proposed “pigeonhole” for CFS among Somatoform Disorders. An example of a key issue highlighted is the extent to which the views of patients should be taken into consideration. Up to now it has generally been considered that the classification of diseases and disorders was the exclusive terrain of doctors.

The final impact of the project will not be known until the international revisions are produced from 2012 onwards. In the meantime there are good reasons for thinking that the CISSD project will be influential in shaping final decisions about the category of Somatoform Disorders overall. The project’s recommendations were backed by detailed arguments and were supported by leading experts, several of whom are directly involved in revising the international classifications. They have the potential to make a significant contribution to future international communication and research in this field.

For similar reasons it is likely that the project will also be influential in shaping final decisions about CFS. One important product of the CISSD project is to increase the likelihood that CFS will eventually be classified as a “general medical condition” (as a physical disorder), rather than as a mental disorder.

The support of Action for ME is gratefully acknowledged.

 

 

The URL for The Elephant in the Room Part Eight is:

http://meagenda.wordpress.com/2009/02/14/the-who-somatisation-project-cissd-project-the-elephant-in-the-room-part-eight/

For previous postings:

The Elephant in the Room Part One:

http://meagenda.wordpress.com/2009/01/31/the-who-somatisation-project-the-elephant-in-the-room/

The Elephant in the Room Part Two:

http://meagenda.wordpress.com/2009/02/02/the-who-somatisation-project-the-elephant-in-the-room-part-two/

The Elephant in the Room Part Three:

http://meagenda.wordpress.com/2009/02/04/who-somatisation-project-the-elephant-in-the-room-part-three/

The Elephant in the Room Part Four:

http://meagenda.wordpress.com/2009/02/05/the-who-somatisation-project-the-elephant-in-the-room-part-four/

The Elephant in the Room Part Five:

http://meagenda.wordpress.com/2009/02/06/the-who-somatisation-project-the-elephant-in-the-room-part-five/

The Elephant in the Room Part Six:

http://meagenda.wordpress.com/2009/02/08/the-who-somatisation-project-the-elephant-in-the-room-part-six/

The Elephant in the Room Part Seven:

http://meagenda.wordpress.com/2009/02/11/the-who-somatisation-project-the-elephant-in-the-room-part-seven/

To be continued

———————-

Published: 14.02.09
Updated:

The WHO Somatisation Project: The Elephant in the Room Part Seven

elephant1s

Image | belgianchocolate | Creative Commons

The Elephant in the Room Part Seven

The WHO Somatisation Project [CISSD Project]

A call for transparency from Action for ME: Part Seven

[This report may be republished as long as it is republished in its entirety, unchanged and with the author and source acknowledged. Note that embedded links may drop out.]

To recap, briefly:

Over the past ten days or so, I have been attempting to establish the source of £42,750 of a total of £62,750 funding provided to Action for M.E. for the CISSD (Conceptual issues in somatoform and similar disorders) Project and also establish what Action for M.E.’s relationship to this Project has been, since its inception, what the organisation’s objectives have been and how these grants have been spent.

Professor Rachel Jenkins (Principal Collaborator, CISSD Project, Director WHO Collaborating Centre, Institute of Psychiatry, London) advised me on 5 February that the grants had nothing to do with the WHO Collaborating Centre and suggested I contact Dr Richard Sykes, the Project’s Co-ordinator.

Professor Kurt Kroenke’s (International Chair, CISSD Project) response on 6 February was that he had had nothing to do with the finances of the project and that although he had chaired the meetings he really did not know about the grants of which I was speaking.  He suggested I contact Professor Michael Sharpe or Dr Richard Sykes.

Professor Michael Sharpe* (UK Chair, CISSD Project) advised me on 7 February that he had no knowledge of any grants relating to the CISSD and Action for M.E. and that he was sorry that he could not help.  He suggested I contact Dr Richard Sykes.

Dr Sykes has yet to respond to my enquiries.

I have also contacted Dr Robert Jakob (Medical Officer [ICD], Classifications, Terminologies, and Standards, World Health Organisation, Geneva) and the American Psychiatric Association, since Action for M.E. does not always respond to requests for information about its activities and because I have yet to hear from Dr Sykes.

However, I can report, today, a response from Mr Nick Boatwright, Action for ME’s Finance Manager.

Mr Boatwright advises that:

The CISSD project (Conceptual issues in somatoform and similar disorders) was initiated by the former Westcare CEO, Dr Richard Sykes, who had concerns about the classification of CFS or CFS/ME by the World Health Organisation.

When Action for M.E. merged with Westcare in 2002, it was agreed in handover negotiations that Dr Sykes would go ahead with the project.

The work was supported by grants from the Wellcome Trust, administered by the University of Edinburgh and from the Hugh and Ruby Sykes Charitable Trust, administered by Action for M.E.

Action for M.E. received one retrospective payment of £1750 (equivalent £350 per year) in administration fees. The charity did not gain financially in any other way.

The project was undertaken by Richard Sykes between 2003-2007.

The recommendations were published in an article, Revising the classification of somatoform disorders**, by Kroenke, Sharpe and Sykes, in Psychosomatics, July/August 2007, 48:277-285.

No-one on the current staff was involved in the project and that if I had any further enquiries, the best person to help would be Dr Richard Sykes, CISSD Project Co-ordinator. [Mr Boatwright provides contact details for Dr Sykes.]

Mr Boatwright does not confirm whether and when Action for ME intends to respond to individual and public calls for a full account of Action for M.E.’s involvement in the CISSD Project. I shall therefore be contacting Mr Boatwright again to ask whether Action for M.E. intends to publish a full report on the CISSD Project and also will raise any other issues or need for further clarification arising out of Mr Boatwright’s response.

* Professor Michael Sharpe is Honorary Consultant in Psychological Medicine and Director of the Psychological Medicine Research Group, University of Edinburgh.

Professor Sharpe is a Principal Investigator for the MRC’s PACE Trial; co PIs for the PACE Trial: Professor Peter White, St Bart’s Hospital London; Professor Trudie Chalder, King’s College, London.

**See:  Review Articles: Psychosomatics 48:4, July-August 2007, Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations

Full paper in PDF format: http://psy.psychiatryonline.org/cgi/reprint/48/4/277.pdf

Full paper in html format: http://psy.psychiatryonline.org/cgi/content/full/48/4/277

or open PDF here on ME agenda CISSD review

Related links:

The ONE CLICK AfME Dossier: http://www.theoneclickgroup.co.uk/documents/ME-CFS_char/AFME/THE%20AFME%20DOSSIER.pdf

Westcare Financial Statement (Document courtesy of The ONE CLICK Group), FINANCIAL STATEMENTS: 1 July 2001 – 30 June 2002: http://tinyurl.com/westcare02financial

—————–

The URL for The Elephant in the Room Part Seven is:

http://meagenda.wordpress.com/2009/02/11/the-who-somatisation-project-the-elephant-in-the-room-part-seven/

For previous postings:

The Elephant in the Room Part One:

http://meagenda.wordpress.com/2009/01/31/the-who-somatisation-project-the-elephant-in-the-room/

The Elephant in the Room Part Two:

http://meagenda.wordpress.com/2009/02/02/the-who-somatisation-project-the-elephant-in-the-room-part-two/

The Elephant in the Room Part Three:

http://meagenda.wordpress.com/2009/02/04/who-somatisation-project-the-elephant-in-the-room-part-three/

The Elephant in the Room Part Four:

http://meagenda.wordpress.com/2009/02/05/the-who-somatisation-project-the-elephant-in-the-room-part-four/

The Elephant in the Room Part Five:

http://meagenda.wordpress.com/2009/02/06/the-who-somatisation-project-the-elephant-in-the-room-part-five/

The Elephant in the Room Part Six:

http://meagenda.wordpress.com/2009/02/08/the-who-somatisation-project-the-elephant-in-the-room-part-six/

To be continued

———————-

Published: 11.02.09
Updated:

JR Media coverage: BBC: ME pair appeal ‘unfair NHS rules’

JR Media Coverage

Media coverage of the Judicial Review of the NICE Guideline for CFS/ME which begins in the Royal Courts of Justice, today, at 10.30am.  

The JR had been picked up by the BBC.

Can you or a carer, your family or friends join the gathering outside the Royal Courts of Justice, if only for an hour or two, tomorrow, or attend all or part of tomorrow’s hearing, space permitting? 

Additional reporting will be added to those below.

————————-

FT Adviser | 12 February | Sharon Flaherty

Insurers under fire over treatment of ME sufferers

Magazine: FTAdviser

Insurers are set to come under fire at a High Court case today (12 February) over their treatment of myalgic encephalomyelitis (ME) and chronic fatigue syndrome suffers, who are often unsuccessful in claiming on their insurance policies.

Last year FTAdviser.com revealed that an independent financial adviser had his permanent health insurance payments stopped by Norwich Union, because of the difficulty in diagnosing his condition of chronic fatigue syndrome. (See article previous here )

In the last 18 months, a dispute over the National Institute of Clinical Excellence (NICE) guidance on the condition has arisen, in part, because it emphasises that ME and chronic fatigue syndrome is a psychiatric condition rather than a physical one – something the wider ME community denies…

Read full report here

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The Herald | 12 February | Phil Miller

Two ME sufferers challenge ‘perverse’ guidance given to doctors  

————————-

EDP24 | 11 February 2009 | Sarah Brealey

http://tinyurl.com/cdxn4x

Norwich man’s ME fight goes to High Court

A Norwich man’s landmark battle for better medical treatment started in the High Court today.

Kevin Short, 47, a graduate and former engineer, is bringing the case with Douglas Fraser, a former professional concert pianist from London. They are applying for a judicial review of the guidelines for treatment of myalgic encephalomyelitis, or ME. Mr Short has had ME since the 1980s and has problems with mobility…

Read full report here

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Fenland Citizen | 11 February 2009

http://www.fenlandcitizen.co.uk/latest-east-anglia-news/Restricted-me-treatments-challenged-in.4969959.jp  

‘Restricted me treatments’ challenged in high court

 Two ME sufferers, including one from Norfolk, have launched a High Court battle over the “perverse and irrational” guidance they say has been issued to doctors for the treatment of their condition…

Read full report here

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It’s understood that an interview has been recorded for Radio Solent – no links yet.

————————-

Shields Gazette | 1o February 2008 |Angela Reed Chief reporter

http://www.shieldsgazette.com/news/ME-sufferers-await-landmark-judgement.4965599.jp  

ME sufferers await landmark judgement

SOUTH Tyneside sufferers of a debilitating condition hope a legal challenge will lead to the re-writing of guidance on their treatment.

Medical guidelines on the diagnosis and management of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are being challenged in a judicial review at the High Court, in a case due to start today…

Read full report here

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BBC | 11 February 2009

http://news.bbc.co.uk/1/hi/health/7881116.stm

ME pair appeal ‘unfair NHS rules’

“There is little evidence that what has been recommended actually works”  Jamie Beagent, patients’ solicitor

Two ME patients are due to launch a High Court appeal against what they say is an “unfair and irrational” approach by the NHS to their condition…

Read full report here

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The Homecare industry Information Service | 10 February 208

http://www.thiis.co.uk/ME-courts.aspx

Courts challenge for M.E

Medical guidelines on the diagnosis and management of M.E. and chronic fatigue syndrome will be challenged in a judicial review at the Royal Courts of Justice.

The case against the National Institute for Health and Clinical Excellence (NICE) is generating considerable interest among the 250,000 people in the UK who have M.E., as some patients hope the legal proceedings will lead to the withdrawal of the guideline.

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

Read full report here 

————————–

Medical News Today | 9 February 2008

http://www.medicalnewstoday.com/articles/138333.php

ME Association Fully Supports Legal Challenge To The NICE Guideline On ME/CFS, UK

The ME Association will be fully supporting the two people with ME – Douglas Fraser and Kevin Short – who have succeeded in achieving a Judicial Review into the 2007 NICE Guideline on ME/CFS.

The Judicial Review, which could result in the NICE guideline being withdrawn, is taking place at the Royal Courts of Justice in The Strand, London on 11 and 12 February…

Read full report here

Dr Bruce Carruthers supports Judicial Review of NICE Guideline CG53

http://www.hmcourts-service.gov.uk/cms/cause.htm

Court listing

COURT 76
Before MR JUSTICE SIMON
Wednesday 11 February, 2009

At half past 10

FOR HEARING
CO/10408/2007 The Queen on the application of Fraser v National Institute For Health And Clinical Excellence

—————————————————————-

 

This information release has been issued by Kevin Short:

DR BRUCE CARRUTHERS SUPPORTS JUDICIAL REVIEW OF NICE CG53:

Dr Bruce Carruthers, principle author of the International (Canadian) ME/CFS Diagnostic and Treatment Protocols was very much hoping to attend the UK High Court judicial review of the NICE ‘CFS/ME’ Guidelines (CG53) on 11th and 12th of February in London. Unfortunately, due to personal circumstances, Dr Carruthers has now sadly informed me that he is unable to attend. However, Dr Carruthers would like it to be widely known that he wishes the litigants every success in securing justice for ME patients and that he very much supports the UK ME community in its struggle for genuine science-based healthcare. Dr Carruthers believes patient treatments should be fully informed by ALL of the available clinical and research evidence and that proper patient examination – to correctly identify underlying disease processes and subgroups – should precede diagnostic labeling and treatment recommendations.

Kevin Short
contact@angliameaction.org.uk

 

Ed: Further information on the Judicial Review of the NICE Guideline for CFS/ME (CG53)

NICE Judicial Review Stickers will be handed out at the Court:

View “Not so NICE for M.E.”  sticker at: http://www.flickr.com/photos/34106287@N06/3266591703/

Royal Courts of Justice

Image | bortescristian | Creative Commons

Preview of the NICE Judicial Review

by Margaret Williams & Horace Reid | 03 February 2009

May be reposted

The Judicial Review of the NICE guidelines on CFS/ME will be held on Wednesday & Thursday 11th & 12 of February 2009. The case is being brought by two adult patients living in the UK.

The constraints of this type of legal challenge (Judicial Review) have already been indicated by the judge who initially granted leave to proceed. Mr Justice Cranston made it clear in June 2008 that a court is not an appropriate forum for medical debate. Arguments will therefore centre on technical issues, such as whether NICE followed its own prescribed procedures.

Much to the disappointment of many patients, there will be no debate on the aetiology, definition, or biomedical status of ME. However in an intense two-day hearing, other crucial issues will be addressed.

Guideline Development Group Bias

It has been the practice of the psychiatric lobby to attempt to pack important CFS/ME committees with their own supporters, to achieve their desired outcomes of CBT & GET. They did this successfully in 1996 with the Royal Colleges report, repeating the trick with the CMO’s committee in 2002. With NICE the liaison psychiatrists have been more subtle. Instead of personally serving on the Guideline Development Group (GDG), it seems that they have managed to stack the group with sympathizers, whilst biomedical ME specialists critical of their approach were excluded. A Freedom of Information request has revealed that Professor Anthony Pinching among others was deeply involved in the GDG selection process.

The many competing interests of the individuals on the GDG (declared and undeclared) may now be subjected to the scrutiny of a High Court judge.

Failure to Declare Conflicting Interests

Take for example the case of Dr. Fred Nye. Incredible as it may seem, as a member of the GDG he was allowed to adjudicate on the quality and relevance of his own research. His RCT, co-published with Powell and Bentall, constituted 25% of the positive evidence base supporting the NICE recommendation on GET. It is difficult to understand how the chairman and fellow members of the GDG could regard him as a neutral and objective participant when the value of GET was being debated.

At some stage Dr. William Hamilton, another GDG member, did declare his connection with the Liverpool Victoria and Exeter Friendly insurers. But NICE failed to appreciate that his appointment gave him an opportunity potentially to import an inappropriate commercial agenda into the clinical area. Many health insurers have subjected ME patients to sharp practice; their notoriety came to the attention of Dr. Ian Gibson’s committee in 2006. His Parliamentarians condemned the “blatant” conflicts of those individual researchers who mingled their commercial and clinical interests. In its appointment of Dr. Hamilton, NICE failed to heed these warning voices.

A number of other prominent GDG members failed to declare their close connection with interested parties such as Professors Simon Wessely, Peter White, and Trudie Chalder. Their names and multiple omissions may soon be disclosed.

Scrutiny of the CBT/GET Evidence Base

The Wessely School continually boast that their favoured treatments CBT & GET are “evidence based”; but their claims lack objective validation. All too often they peer review their own work. In the 2006 NHS Plus exercise, for instance, on Occupational Health guidance for CFS/ME, Professors Chalder and White sat in judgment on their own research, without declaring a competing interest. Their fellow NHS Plus participant, Professor Michael Sharpe, apparently noticed nothing amiss.

It is clear that the court cannot entertain clinical arguments on the merits of NICE-endorsed treatments for any disorder. However the Judge may be asked to consider whether NHS recommendations for 240,000 UK ME patients can justifiably be based on the miniscule amount of evidence supporting CBT & GET. The much-vaunted Wessely School evidence base will be subjected to impartial public scrutiny.

As AYME has hinted in its website post of 19/1/09, the case has the active support of many leading biomedical researchers, at home and abroad. Dr. Bruce Carruthers, lead author of the Canadian national ME guidelines, plans to be present in court throughout the two day hearing.

AYME & NICE

AYME contemplate two outcomes: the 2007 NICE CFS/ME guideline could be struck down altogether; or it might survive, and be subject to routine revision in due course.

Routine revision, already envisaged, would simply give NICE an opportunity to repeat past errors. The psychiatrists would likely get their way once more, and the legitimate concerns of ME patients would be ignored as usual.

NICE Must Begin Again

Striking down Clinical Guideline 53 is the more desirable option. The present guideline would cease to have effect, and NICE would have to begin again from scratch. Those who allegedly manipulated the composition of the CFS/ME GDG would be exposed and discredited. No- one would dare to resort to such tactics again. If it is proved that the GDG was infiltrated by the commercial interests of the medical insurance industry, and became a pawn of a clinical special interest group, then NICE will be much more circumspect next time. And the CBT/ GET research bubble will be definitively burst.

Patient & Media Support Needed

It is important that ME patients and their families come in person to London next week. The presence of large numbers inside the building, and outside along with TV cameras, will impress upon the court the importance of this issue to a quarter-of-a-million UK ME patients. (Observer spaces inside the designated courtroom will be extremely limited).

National and local ME charities in the UK and abroad should alert the media to the global significance of this court case, in the long- running medical controversy about ME.

 

High Court Hearing Countdown

Judicial Review NICE Guideline for CFS/ME

Where? | Room 76, Royal Courts of Justice, The Strand, London WC2A 2LL

East Block location maps | http://www.nicemecourt.co.uk

When? | Wednesday 11th and Thursday 12th February 2009

Why? | http://www.meactionuk.org.uk/nicejr.htm

What else do I need to know? | http://www.nicemecourt.co.uk

Whom do I contact? | contact@nicemecourt.co.uk

 

 

The NICE M.E. Guidelines Judicial Review new YouTube video

“Annette Barclay talks about the impending legal challenge to the NICE guidelines on M.E.”

8.17 mins | GBCOne

ME agenda site has no connection with any legal case involved in the NICE Judicial Review or with the unofficial supporters’ website. All enquiries about the Judicial Review, including media enquiries, should be directed to Leigh Day & Co or to the High Court, as appropriate. Members of the ME community planning to attend the hearing or who are able to offer assistance should direct enquiries about arrangements for what is currently scheduled for a two day hearing to the web master of the NICE JR Supporters’ website

 

Judicial Review: NICE Guideline CFS/ME: ONE CLICK Information Release

Judicial Review: NICE Guideline CFS/ME | ONE CLICK Information Release | 9 February 2008

The ONE CLICK Group

PDF   ONE CLICK JR info release

SUMMARY

Judicial Review, CFS/ME NICE Guidelines, 11 & 12, February 2009. In The High Court Of Justice, Queens Bench Division, Administrative Court.

Claimants: Douglas Frazer, Kevin Short.

Interested Party: Benjamin Bryant/The Pledgers.

Defendant: The National Institute for Health and Clinical Excellence (NICE).

This case concerns a challenge made to the legality of a clinical guideline published by NICE on recommended treatments for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Information Release, The One Click Group

JUDICIAL REVIEW CFS/ME NICE GUIDELINES
11 & 12 February 2009
Court Room 76
Royal Courts of Justice
Strand
London
England
WC2A 2LL
Tel: 0207 947 6000

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