The Elephant in the Room Part Nine
The CISSD Project
A call for transparency from Action for ME: Part Nine
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.]
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
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”. 
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
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
Personality and Personality Disorders
Sexual and Gender Identity Disorders
Somatic Distress 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:
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.
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?
 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:
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.