See: The Elephant in the Room Part Nine and DSM-V Directory for previous reports on the DSM and WHO ICD Revision Processes and the CISSD Project.
Simon Wessely “interview” in New Scientist
http://www.newscientist.com/article/mg20126997.000-mind-over-body.html
There have now been over 340 391 415 429 443 456 487 comments on the New Scientist website to the “interview” with psychiatrist Prof Simon Wessely in last week’s New Scientist. On 18 March, Prof Wessely has published a response via the comment section.
The title of the print edition interview was “Mind over body?” The online article has now had two changes of title.
Yesterday, I posted the following two comments. The second comment was subsequently removed by the New Scientist moderator. Commentors are not informed by the moderators what breach of Terms of Use a posting has committed.
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DSM And ICD “harmonization”
Tue Mar 17 21:30:30 GMT 2009 by Suzy Chapman, ME agenda
In this New Scientist “interview”, speaking of CFS, Fibromyalgia and IBS, Prof Wessely says, “You have to think that we have got the classifications wrong.”
During his presentation “What is chronic fatigue syndrome; and what is ME?” at the Royal Society of Medicine CFS Conference, April 08, Prof Peter White (Barts) discouraged medics from using ICD saying, “So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria. They really need sorting out and they will be in due course, God willing.”
The WHO is revising the classification of mental and behavioural disorders as part of the overall revision of ICD-10. The next edition of ICD, ICD-11, is due around 2014. The revision of the American Psychiatric Association (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) has already been underway since 2000. The final approved, revised version, DSM-V is expected in May 2012.
Keep a very close eye on the unfolding of the APA DSM revision process and on the APA/WHO “DSM/ICD Harmonization Coordination Group” – the aim of which is to “facilitate uniformity and harmonization” between ICD-11 mental and behavioural disorders and DSM-V.
The APA has set up a DSM-V “Somatic Distress Disorders” Work Group to consult externally, commission research, undertake reviews and make recommendations and proposals for the revision of current DSM classifications for the so-called “somatoform disorders”. This is just one of 13 Work Groups convened by the APA which have been meeting since late 2007 to research and develop recommendations and proposals across the spectrum of disorders towards the overall revision of DSM-IV and it is this Work Group which has the most relevance for the ME and CFS patient community. But there are also implications for the IBS, Fibromyalgia, Chemical Sensitivity, Chemical Injury and GWS patient communties in the US and beyond for revisions to the so-called “medically unexplained syndromes”, the so-called “somatoform and similar disorders” and the so-called “functional somatic syndromes”.
The CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project was co-ordinated by Dr Richard Sykes PhD, the former Director of Westcare, and undertaken between 2003 and 2007. The Project was part funded by the Hugh and Ruby Sykes Charitable Trust and administered by Action for M.E. Dr Sykes is an “Honorary Member” of the WHO Collaborating Centre, Institute of Psychiatry, Kings College, London. The relationships between Dr Sykes and the WHO Collaborating Centre and between the WHO Collaborating Centre and the CISSD Project have yet to be clarified. This ad hoc and unofficial Project held three workshops in 2005-06 out of which a number of individual papers and a review paper resulted which discussed classificatory issues around the so-called “functional somatic syndromes” which are said to include chronic fatigue syndrome, IBS and Fibromyalgia.
According to Dr 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).” Dr Sykes has been asked to explain what he means by this statement. Note also, that Dr Sykes uses the term “CFS/ME”. The WHO does not use this conflation; there is no WHO classification or ICD code for “CFS/ME”. There can be no dual classifications in ICD.
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[Removed by moderator]
DSM And ICD “harmonization” Continued
Tue Mar 17 21:41:02 GMT 2009 by Suzy Chapman, ME agenda
The CISSD Project comprised a 24 member international and multidisciplinary team, chaired by Dr Kurt Kroenke, Reginstrief Institute, Indianapolis and Prof Michael Sharpe, Department of Psychiatry, University of Edinburgh and brought together via three workshops to review the classification of the so-called “somatoform and similar disorders” with the express purpose of informing the development of DSM-V. The CISSD Project Work Group reviewed a range of proposals including “proposals for the refinement of current criteria for somatoform disorders”; “proposals for the abolition of the category of somatoform disorders”; “proposals for the reclassification of some of the conditions as physical disorders”; “proposals for making a dual diagnosis”; “proposals for revising or renaming or abolishing the distinction between mental and physical disorder” and proposals for the “definition of relevant terms”.
On the basis of its review, specific recommendations have been made and the review paper published by the CISSD Project leads in July 2007 has fed into both the DSM and the WHO ICD revision processes. The full paper can be accessed here:
http://psy.psychiatryonline.org/cgi/content/full/48/4/277
Four members of the CISSD Project Work Group (Levenson J, Barsky A, Sharpe M and Creed F) are now members of the APA “DSM-V Somatic Distress Disorders” Work Group. Five members of the CISSD Work Group participated in the APA convened diagnosis related “Somatic Presentations of Mental Disorders Symposium” in Sept 2006, in Beijing. Prof Wessely also presented at this planning Symposium, out of which recommendations were developed for proposed revisions to the so-called “somatoform disorders” and “functional somatic syndromes”, under the umbrella of which many psychiatrists and psychologists seek to place Chronic Fatigue Syndrome, ME, IBS and Fibromyalgia.
Summaries of these presentations can be read here:
http://tinyurl.com/chinasomaticsymposium
Clarification of current ICD classifications for ME, PVFS and CFS has recently been sought from the WHO, Geneva, whose response can be read here:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0902a&L=co-cure&T=0&F=&S=&P=2853
Dr Sykes has been asked to clarify that when using the term “chronic fatigue syndrome” in the context of the so-called “functional somatic syndromes” whether he and his CISSD Project lead colleagues are referring to Fatigue syndrome (F48.0) under ICD:10 Mental Health 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), not under ICD Mental and behavioural disorders.
It is not possible for readers to contextualise the current ICD indexing of Myalgic encephalomyelitis and Chronic fatigue syndrome in relation to current DSM taxonomy, nor in relation to the recommendations made by the CISSD Project, or beyond, to recommendations being developed through the APA “Somatic Distress Disorders” Work Group towards DSM-V and ICD/DSM “harmonization” because neither of these existing ICD classifications is mentioned within the review paper that Dr Sykes and his team has published – an extraordinary and most disturbing omission!
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I’ve since posted the following edited version of the second comment, which has thus far remained on the New Scientist comment board:
http://www.newscientist.com/commenting/browse?id=mg20126997.000
D S M And I C D “harmonization”
Thu Mar 19 08:46:42 GMT 2009 by Suzy Chapman
The CISSD Project comprised a 24 member international and multidisciplinary team, chaired by Dr Kurt Kroenke, Reginstrief Institute, Indianapolis and Prof Michael Sharpe, Department of Psychiatry, University of Edinburgh, brought together via three workshops in 05 and 06 to review the classification of the so-called “somatoform and similar disorders” with the express purpose of informing the development of DSM-V.
On the basis of its review, specific recommendations have been made and the review paper published by the CISSD Project leads in July 2007 has fed into both the DSM and the WHO ICD revision processes. The full paper can be accessed here:
http://psy.psychiatryonline.org/cgi/content/full/48/4/277
Four members of the CISSD Project Work Group (Levenson J, Barsky A, Sharpe M and Creed F) are now members of the APA “DSM-V Somatic Distress Disorders” Work Group.
Five members of the CISSD Work Group participated in the APA convened diagnosis related “Somatic Presentations of Mental Disorders Symposium” in Sept 2006, in Beijing. Prof Wessely also presented at this planning Symposium, out of which recommendations were developed for proposed revisions to the so-called “somatoform disorders” and “functional somatic syndromes” (under which the CISSD Project et al lump “chronic fatigue syndrome”, IBS and Fibromyalgia.)
Summaries of these Symposium presentations can be read here:
http://tinyurl.com/chinasomaticsymposium
Dr Sykes has been asked to clarify that when using the term “chronic fatigue syndrome” in the context of the so-called “functional somatic syndromes” whether he and his CISSD Project lead colleagues are referring to Fatigue syndrome (F48.0) under ICD:10 Mental Health 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), not under ICD Mental and behavioural disorders.
It is not possible for readers to contextualise the current ICD indexing of Myalgic encephalomyelitis, Postviral fatigue syndrome and Chronic fatigue syndrome in relation to current DSM taxonomy, nor in relation to the recommendations made by the CISSD Project, or beyond to recommendations being developed through the APA “Somatic Distress Disorders” Work Group towards DSM-V and ICD/DSM “harmonization” because none of these existing G93.3 ICD classifications are mentioned within the review paper that Dr Sykes and his team has published.
Have a look at the 2005 paper by Mayou, Kroenke, Sharpe et al: Somatoform Disorders: Time for a New Approach in DSM-V at:
http://ajp.psychiatryonline.org/cgi/content/full/162/5/847
and Table 1 and Table 2.
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Marginalisation Of Stakeholders
Fri Mar 20 15:27:02 GMT 2009 by Suzy Chapman
I have already set out that the American Psychiatric Association (APA) is in the process of revising DSM-IV and that the APA participates with the WHO in a “DSM/ICD Harmonization Coordination Group”. The aim of which, is to “facilitate uniformity and harmonization” between the next edition of DSM (DSM-V) and the next edition of ICD (ICD-11) Chapter on Mental and behavioural disorders, with the objective that the “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.”
The current ICD section on Mental and behavioural disorders is:
ICD Chapter V: Mental and behavioural disorders (F00-F99)
http://www.who.int/classifications/apps/icd/icd10online/index.htm?gF40.htm+F454
The issue of relevance to us, is the working towards congruency between the DSM Codes and Categories for Somatoform Disorders and the classifications currently indexed in ICD-10 Chapter V, under “Neurotic, stress-related and somatoform disorders (F40-F48)”, specifically those indexed between F45 and F48: “Somatoform disorders” and “Other neurotic disorder, Neurasthenia”.
For comparison of existing codings across DSM and ICD, see:
http://ajp.psychiatryonline.org/cgi/content/full/162/5/847/T1
TABLE 1. DSM-IV Codes and Categories for Somatoform Disorders and ICD-10 Equivalents
The future classification within the next edition of DSM of the so-called “functional somatic syndromes” (under which umbrella many psychiatrists already place fibromyalgia, IBS, “chronic fatigue syndrome” and a number of other “conditions/disorders”) falls within the remit of the DSM-V Work Group for “Somatic Distress Disorders”.
The APA DSM revision and development process has already spawned dozens of published papers and reviews within the field of “somatoform disorders” alone, including a significant and ever growing body of papers and reviews authored and co-authored by members of the unofficial CISSD Project Work Group.
Within their own deliberations, there were suggestions for which the CISSD Work Group are reported as having achieved near consensus but other areas where there was apparently considerable divergence of opinion. It is unfortunate that very few of the papers which have so far resulted directly out of the CISSD Project or out of the DSM revision process, in general, are freely available; this makes it difficult to establish areas of agreement or divergence of opinion amongst influential members of the CISSD Project – four of whom now sit on the DSM “Somatic Distress Disorders” Work Group.
Progress reports issued by the DSM “Somatic Distress Disorders” Work Group are sketchy. Our ME charities do not appear to have been monitoring the process and have certainly not kept their members informed. Action for M.E. has been called upon to issue a report. The ME Association has so far published nothing on the DSM or ICD “harmonization” process or on the CISSD Project. Dr Sykes has yet to provide answers to questions.
I have been informed by Action for M.E. that part of the Westcare “merger” deal, in 2002, was that Dr Sykes would get to continue with his nascent or in the planning stages project. The membership of Action for M.E, were not consulted over the Westcare “merger” and they were not consulted over the CISSD Project, either.
Although Action for M.E. had presented this Project as the “WHO Somatisation Project”, the published review paper is in fact DSM-centric. Dr Sykes has said that the scope of the original project had been broadened out to include conditions other than “chronic fatigue syndrome”. One view is that at some point the project was highjacked.
Nevertheless, the CISSD Project was presented by Action for M.E. as having been undertaken, funded and administered in the name of the ME community for the “benefit” of the ME community although neither Action for M.E. nor Dr Sykes had obtained a mandate to do so. The ME community – stakeholders in the Project – have been disenfranchised from the business of the Project and marginalised from any form of consultation over the scope and objectives of the Project, its Work Group membership and its recommendations. Action for M.E. has sought to obscure the existence of the Project, its own relationship to the Project, its Co-ordinator, Chairs and Work Group, their activities and how over £67,000 of funding has been spent.
