DSM-V and ICD-11 Directory
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
The Elephant in the Room Series Two: DSM-V Directory
Revision of the American Psychiatric Association (APA) Diagnostic and Statistical Manual for Mental Disorders Fourth Edition (DSM-IV) has been underway since 1999. The approved version of the next edition, DSM-V, is anticipated to be finalised in May 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 2000, Darrel A Regier, MD, was recruited from the NIMH to serve as research director for the APA and co-ordinator for the development of DSM-V.
DSM-V work groups, composed of more than 120 scientific researchers and clinicians, have been meeting since late 2007. 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 commission literature reviews and develop research plans for field trials. Individual work groups build on recommendations resulting out of 13 conferences 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.
The progress of the work group we need to monitor is the DSM-V Work Group for “Somatic Distress Disorders”. This is the group responsible for making recommendations and proposals for the revision of “Somatoform Disorders” which includes the so-called “Functional somatic syndromes” – the umbrella term under which many psychiatrists and psychologists place “chronic fatigue syndrome”, CFS, *“CFS/ME”, ME, fibromyalgia and IBS.
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”.
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.” 
Meanwhile, the WHO is revising the classification of mental and behavioural disorders as a part of its overall revision of ICD-10. This process has been underway since April 2007. The Alpha draft version of ICD-11 is expected to be completed in 2010, followed by a year for commentary and consultation. The Beta draft version is expected to 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 is expected be completed in 2013, with approval by the World Health Assembly in 2014. 
The APA participates with the WHO in a DSM-ICD Harmonization Coordination Group.
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.” 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.” 
For the purpose of revision of ICD-10 Mental and Behavioural Disorders, the following groups have been established:
International Advisory Group (AG) for the Revision of ICD-10 Mental and Behavioural Disorders
Global Scientific Partnership Coordination Group
Stakeholder Input and Partnership Coordination Group
Global Health Practice Network (GHPN)
DSM-ICD Harmonization Coordination Group
Prof David Goldberg, Institute of Psychiatry, King’s College London is a participant in Advisory Group meetings and a member of the Global Scientific Partnership Coordination Group.
Dr Steven Hyman, Harvard University, Cambridge, MA, a former Director of the NIMH and an APA DSM-V Task Force member, chairs the meetings of the Advisory Group. As chair of the Topic Advisory Group for Mental Health (TAGMH), Dr Hyman is also a member of the ICD-11 Revision Steering Group.
Another key member of the WHO revision team is psychologist, Dr Geoffrey Reed, PhD, the American Psychological Association’s principal representative to WHO’s International Classification of Functioning, Disability and Health system since 1995. [NB: do not confuse the American Psychological Association with the American Psychiatric Association who use the same acronym – APA.]
According to document , in August 2007, the WHO submitted a request for funding for the revision of ICD-10 Mental and Behavioural Disorders which was met by the American Psychological Association.
Page 5 of the Fall/Winter edition of The Amplifier , a publication of the American Psychological Association, reports:
“The Council approved funding for the sustained contribution of psychology to the World Health Organization’s revision of the mental health chapter of the current International Classification of Diseases and Related Disorders (ICD-10). APA will support the effort through a contract with the International Union of Psychological Science (IUPsyS), which will retain a psychologist consultant to work on the core revision team at WHO. The IUPsyS consultant will be Geoffrey Reed, PhD, former APA Practice Directorate assistant executive director…”
This article goes on to state:
“Dr. Reed is already at work in Geneva with WHO assuring that the ICD-11 will have more psychological and less biological underpinnings to the mental health chapter than the American Psychiatric Association’s DSM-V.”
Are UK patient organisations keeping their members informed?
Despite having acted as administrators for the CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project, UK patient organisation, Action for M.E., has yet to publish anything meaningful on the aims, objectives and outcomes of the CISSD Project and who comprised its Work Group, nor has this organisation informed its members about the DSM-V and ICD-11 revision and “Harmonization” process. The UK patient organisation, the ME Association, has likewise published nothing to date.
There are significant concerns over the implications for potential revisions to DSM-ICD of specific categories like “Somatoform Disorders” and the so-called “Functional somatic syndromes” amongst the UK and US CFS, ME, FM, IBS, GWS, CI, CS and SBS patient communities.
Are UK and international ME patient organisations, ME medical researchers and physicians scrutinising these complex revision and congruency processes? Are they monitoring the work of the DSM-V Somatic Distress Disorders Work Group whose remit has the most relevance for the ME community?
DSM-V and ICD-11 “Directory”
In order to assist the ME community and other interested parties in navigating these harmonization and revision processes, I have compiled a DSM-V and ICD-11 “Directory”. This 20 page document collates links for key documents and notes around the APA DSM-V and WHO ICD-11 revision processes and also around the CISSD Project.
This international project, undertaken between 2003 and 2007 was co-ordinated by Dr Richard Sykes, PhD, former Director of Westcare UK. The proceedings of three Workshops, convened by CISSD Project Chairs, Prof Kurt Kroenke and Prof Michael Sharpe, has informed both the DSM and ICD development processes. Five members of the CISSD Project Work Group participated in the APA Beijing planning conference and four members also sit on the DSM-V Somatic Distress Disorders group.
Over the last four years, the DSM-V revision process has spawned dozens of papers around the so-called “Somatoform Disorders” and “Functional somatic syndromes”. The Directory also lists selected journal papers, reviews and commentaries, including papers resulting out of the CISSD Project and the APA’s 2006 Beijing research planning Symposium “Somatic Presentations of Mental Disorders”. The Directory will be updated as new information becomes available.
The DSM-V Directory can be downloaded in MS Word format from the DSM-V Directory Tab
*Use of the term “CFS/ME” on this site. There is no classification in WHO ICD of the term “CFS/ME”. ME agenda does not use nor advocate the use of the term “CFS/ME”. The term “CFS/ME” is included in this posting because it has been used in the context of so-called “Somatoform Disorders” and so-called “Functional somatic syndromes” by some psychiatrists, psychologists and allied health professionals; the term “CFS/ME” has also been used in the context of “Somatoform Disorders” and “Functional somatic syndromes” in specific relation to the CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project by Dr Richard Sykes, the Project Co-ordinator. A review paper resulting out of that Project has fed into the ongoing revision processes towards DSM-V and ICD-11. There will be other instances on this site where the term “CFS/ME” is used, for example when citing documents such as the NICE Guideline CG53 on CFS/ME, or meetings such as the forthcoming CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference, where it is not possible to avoid (and where it would be incorrect not to use) the term “CFS/ME”. It is unfortunate that a few of our US advocates seem unable or unwilling to grasp this concept.