The Elephant in the Room Part Eight
The WHO Somatisation Project [CISSD Project]
A call for transparency from Action for ME: Part Eight
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
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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.
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
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:
For previous postings:
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:
To be continued