US, UK and international patient organisation submissions to DSM-5 draft proposals

US, UK and international patient organisation submissions to DSM-5 draft proposals

Post #29 Shortlink:

The DSM-5 public review period closes on 20 April – that’s less than four weeks away.

Patient representation organisations, clinicians, researchers, allied health professionals, patient advocates and other stakeholders can register online at to submit responses.

US patient organisation submissions:

CFSIDS: The March issue of CFIDSLink-e-News reports that the CFIDS Association of America is seeking input from outside experts into the DSM-5 public review process. Their notice can be read here:

WPI: The Whittemore Peterson Institute has announced on its Facebook site that it intends to submit a response:

International patient organisation submissions:

IACFSME: The IACFSME has issued an alert for international CFS and ME clinicians, researchers and professionals and has published a copy of the organisation’s own submission in the DSM-5 public review process. Their notice and submission can be read here:

ESME: ESME (International Society for ME) has stated on its Facebook site that its Think Tank panel members will submit a response which will be posted on ESME’s website and on ESME’s Facebook page:

If readers are aware of other US organisations, international organisations or professionals who have stated that they intend to submit responses, please let me know as I am collating these on my site.

UK patient organisation submissions:

On 4 March, I contacted senior personnel of seven national UK patient and research organisations. All were sent key links and documents relevant to the DSM-5 Somatic Symptom Disorders Work Group proposals. (These organisations had also been sent selected DSM revision related material during the course of the past twelve months so all will have been aware of the impending release of draft proposals for DSM-5.)

They were all asked if they would clarify whether they intended to submit a response to the DSM-5 draft proposals for revision of DSM-IV categories currently classified under “Somatoform Disorders” and if so, whether they intended to publish their submission.

Those organisations which had not responded by 22 March were contacted again. These are the replies so far to my enquiries:

The Young ME Sufferers Trust: No reply received.

AYME: No reply received.

Invest in ME: Invest in ME has confirmed that it does intend to submit a response and that it will be publishing its response.

ME Research UK: Neil Abbott has said that it is uncertain whether resources will run to producing a response, but if a response is put together on behalf of MERUK, then this would be made publicly available.

Action for M.E.: On 25 March, in a telephone conversation, Action for M.E.’s Policy Officer was unable to confirm what Action for M.E.’s intentions are. The Policy Officer was asked to follow this up with Sir Peter Spencer (CEO) and Heather Walker (Communications Manager) since neither had responded to my email enquiries.

Later in the day, Action for M.E. posted a holding statement from its CEO, Sir Peter Spencer, on its Facebook Wall ( ) stating that:

“Action for M.E. will respond to the American consultation exercise before the 20th April.

“We will publish our considered response on our website when it has been submitted to the DSM-5 Task force.

“Action for M.E ‘s position is that M.E./CFS is a long-term and disabling physical illness. We accept the WHO classification in ICD 10 G93.3 that M.E. is a neurological disorder.

“We will oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly.”

25% ME Group: The 25% ME Group has published a 12 page “Submission re: DSM-V and ME/CFS”, compiled by Professor Malcolm Hooper and Margaret Williams for submission by The 25% ME Group, dated 20 March 2010:

The ME Association: Neil Riley, Chair of the ME Association Board of Trustees, provided me with the following information:

That a response had already been submitted to the DSM-5 on 11 February.
That the response was submitted not by the ME Association but by Dr Ellen Goudsmit, PhD.
That the ME Association endorses Dr Goudsmit’s submission.
That the ME Association “had not thought of publishing it and wanted to see what the final proposals for the revision of the DSM categories will be but [Mr Riley] can confirm that the main argument put forward was that CFS should be an exclusion.”

In response to a request for further clarification, Mr Riley wrote:

“As you are aware the DSM-5 draft proposals relate to proposed psychiatric categories and this is a specialised field for which professional advice was best sought. As you know CFS and ME are not in the current draft for DSM-5. A comment was submitted related to another disorder (CSSD) which may be considered by some clinicians as an additional diagnosis on the axis e.g. affecting outcome of CFS. This was not a response to the text on CFS but challenged the robustness of a proposed psychiatric disorder.”

“The current text in the draft ‘clarifies that a diagnosis of CSSD is inappropriate in the presence of only unexplained medical symptoms. Similarly, in conditions such as irritable bowel syndrome, CSSD should not be coded unless the other criterion (criterion B-attributions, etc) is present.’ Without diagnostic tests to determine whether attributions are correct (cf criterion B), our recommendation is that to avoid confusion, CFS should be an exclusion.”

Mr Riley added:

“If a future draft mentions CFS, a formal response on behalf of the MEA is justified and will be published in full online.”

Other than the comments contained in Mr Riley’s responses to me earlier this month, the ME Association has been silent on the DSM-5 revision process and its position on the proposals of the Somatic Symptom Disorders Work Group and whether it had intended to submit a response, as an organisation, on behalf of its members.

Mr Riley’s response indicates that the ME Association does not plan to publish a copy of the response which it says it is endorsing, in order to fully inform its membership and the wider ME community of its position on the DSM-5 proposals.

If you find this unacceptable, please advise the Board of Trustees.

In June 2009, the ME Association published, on its website only, a “Summary Report” on the CISSD Project* which had been co-ordinated by Dr Richard Sykes, PhD. between 2003 and 2007. This report drew on the content of the December 2007 Final Report on the CISSD Project handed to the project’s Administrators, Action for M.E. on completion of the project.

The ME Association has published no comment or opinion on the aims and objectives of the project, itself, the membership of its workgroup, the content and recommendations contained in the Review paper published by the project’s leads, Kroenke, Sharpe and Sykes in mid 2007, or on the “Summary Report” provided to it by Dr Sykes, either at the time that it placed this document on its website, last June, nor since.

The project’s UK chair was Professor Michael Sharpe.

I will update when I have heard from the remaining two organisations.

If readers are aware of other UK organisations and professionals who are intending to make a submission, please let me know.


Related material:

The DSM-5 proposal is that Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC) and Factitious Disorders should be combined under a common rubric entitled “Somatic Symptom Disorders” and for a new disorder – “Complex Somatic Symptom Disorder (CSSD)”.

The DSM-5 public review period runs from 10 February to 20 April. Members of the public, patient representation organisations, professionals and other end users can submit responses, online.

Please take this opportunity to comment and to alert and encourage professionals and international patient organisations to participate.

Proposed Draft Revisions to DSM Disorders and Criteria are published here on the APA’s relaunched website:

Somatoform Disorders:

Proposed new DSM-5 category: Complex Somatic Symptom Disorder:

Two Key PDF documents are associated with proposals:

PDF A] Somatic Symptom Disorders Introduction DRAFT 1/29/10

PDF B] Justification of Criteria – Somatic Symptoms DRAFT 1/29/10

*Review paper: CISSD Project leads Kroenke K, Sharpe M, Sykes R: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations. Psychosomatics 2007 Jul Aug;48(4):277-85. FREE Full Text:

18 Proposals submitted by Dr Richard Sykes to WHO ICD Update and Revision Platform, Topical Advisory Group – Mental Health (TAGMH):

The paper: Kroenke K: Somatoform disorders and recent diagnostic controversies. Psychiatr Clin North Am 2007 Dec;30(4):593-619:  contains the caveat:

“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. As such, the CISSD recommendations should be considered advisory rather than official. Also, there were some suggestions for which the CISSD achieved near consensus but other issues where opinions diverged considerably.”


Note: An unpublished paper refered to on the DSM-5 site at this URL under “Rationale”

Complex Somatic Symptom Disorder [Rationale Tab]

“A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. A recent systematic review (Lowe, submitted for publication) shows that of all diagnostic proposals, only Somatic Symptom Disorder reflects all dimensions of current biopsychosocial models of somatization (construct validity) and goes beyond somatic symptom counts by including psychological and behavioral symptoms that are specific to somatization (descriptive validity). Predictive validity of most of the diagnostic proposals has not yet been investigated.”

is thought to be this paper currently “In Press” on the Journal of Psychosomatic Research, for which DSM-5 SDD Work Group member, Frances Creed, is a co-editor. Access to full paper requires subscription or pay per paper:

Articles in Press

Towards positive diagnostic criteria: A systematic review of somatoform disorder diagnoses and suggestions for future classification
In Press Corrected Proof , Available online 15 March 2010
Katharina Voigt, Annabel Nagel, Björn Meyer, Gernot Langs, Christoph Braukhaus, Bernd Löwe
Journal of Psychosomatic Research
DOI: 10.1016/j.jpsychores.2010.01.015
Abstract | Full Text | Full-Text PDF (183 KB)


Towards positive diagnostic criteria: A systematic review of somatoform disorder diagnoses and suggestions for future classification

Katharina Voigta 1, Annabel Nagel a1, Björn Meyer a, Gernot Langs b, Christoph Braukhaus b, Bernd Löwe a
Received 1 November 2009; received in revised form 12 January 2010; accepted 14 January 2010. published online 15 March 2010. Corrected Proof


The classification of somatoform disorders is currently being revised in order to improve its validity for the DSM-V and ICD-11. In this article, we compare the validity and clinical utility of current and several new diagnostic proposals of those somatoform disorders that focus on medically unexplained somatic symptoms.

We searched the Medline, PsycInfo, and Cochrane databases, as well as relevant reference lists. We included review papers and original articles on the subject of somatoform classification in general, subtypes of validity of the diagnoses, or single diagnostic criteria.

Of all diagnostic proposals, only complex somatic symptom disorder and the Conceptual Issues in Somatoform and Similar Disorders (CISSD) example criteria reflect all dimensions of current biopsychosocial models of somatization (construct validity) and go beyond somatic symptom counts by including psychological and behavioral symptoms that are specific to somatization (descriptive validity). Predictive validity of most of the diagnostic proposals has not yet been investigated. However, the number of somatic symptoms has been found to be a strong predictor of disability. Some evidence indicates that psychological symptoms can predict disease course and treatment outcome (e.g., therapeutic modification of catastrophizing is associated with positive outcome). Lengthy symptom lists, the requirement of lifetime symptom report (as in abridged somatization), complicated symptom patterns (as in current somatization disorder), and imprecise definitions of diagnostic procedures (e.g., missing symptom threshold in complex somatic symptom disorder) reduce clinical utility.

Results from the reviewed studies suggest that, of all current and new diagnostic suggestions, complex somatic symptom disorder and the CISSD definition appear to have advantages regarding validity and clinical utility. The integration of psychological and behavioral criteria could enhance construct and descriptive validity, and confers prospectively relevant treatment implications. The incorporation of a dimensional approach that reflects both somatic and psychological symptom severity also has the potential to improve predictive validity and clinical utility.

Keywords: Classification, Diagnosis, Diagnostic and Statistical Manual of Mental Disorders, International Classification of Diseases, Somatoform disorders, Validation studies as topic

a Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf and Schön Klinik Hamburg-Eilbek, Hamburg, Germany
b Medical and Psychosomatic Hospital Bad Bramstedt, Bad Bramstedt, Germany
Corresponding author. Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246 Hamburg, Germany. Tel.: +49 40 7410 59733; fax: +49 40 7410 54975.
1 Both authors contributed equally to this paper.
PII: S0022-3999(10)00020-6

Compiled by Suzy Chapman


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