ME agenda: update on status of this site

ME agenda: update on status of this site

This site was created in June 2007 for ME patients, carers and advocates and provided information, resources and commentary on the political issues affecting the lives of UK Myalgic encephalomyelitis (ME) patients.

In 2009, my primary advocacy focus shifted towards monitoring the development of DSM-5* (published May 2013) and ICD-11 (endorsed by the World Health Assembly in May 2019).

In 2010, I created Dx Revision Watch (originally called DSM-5 and ICD-11 Watch) specifically for monitoring the development of both classification systems.

ME agenda site will remain online for its post archives (Post Index to approximately 980 posts) and for occasional, important information relating specifically to ICD-11, DSM-5 and ICD-10-CM.

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I have a number of other WordPress.com sites:

http://suzychapman.wordpress.com/ status: extension site for Dx Revision Watch for occasional, selected material.

Twenty-six soldiers of lead status: extension site to ME agenda for occasional, selected material.

Read ME UK Events status: archived.

Read ME UK Events was created in March 2008 in response to the considerable concerns surrounding the April 2008 Royal Society of Medicine conference on “Chronic Fatigue Syndrome” and to promote the various protests that were staged.

Suzy Chapman can be contacted via the Dx Revision Watch Contact page

Follow Dx Revision Watch on Twitter @dxrevisionwatch

*DSM; DSM-IV; DSM-IV-TR; DSM-IV-PC; DSM-V; DSM V; DSM-5; DSM 5 are registered trademarks of the American Psychiatric Association

US advocate’s Call to action – DSM-5 comments needed by June 15, 2012

US advocate’s Call to action – DSM-5 comments needed by June 15, 2012

Shortlink: http://wp.me/p5foE-3py

Patients, patient organizations and professional stakeholders have three weeks left in which to submit comments in the third and final stakeholder review of draft proposals for DSM-5 categories and criteria.

Comment period closes June 15.

US advocate, Mary Dimmock, has prepared a “Call to action”

Call to action – DSM-5 comments needed by June 15, 2012

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is used in the U.S. to categorize mental disorders for patient diagnosis, treatment and insurance. The new version, DSM-5, includes a proposal for Somatic Symptom Disorder (SSD) that will have profound implications for ME/CFS patients. Your input is needed by June 15, 2012 to ensure that the DSM-5 authors understand your concerns…

…SSD can be applied to patients regardless of whether the symptoms are considered to be medically unexplainable or not. Severity is rated by the count and frequency of somatic symptoms. The “Justification for Criteria – Somatic Symptoms”, issued in May 2011, states that CBT, focused on “the identification and modification of dysfunctional and maladaptive beliefs”, is one of the most promising treatments.

Why this matters to ME/CFS patients
A diagnosis of SSD can be “bolted” onto any patient’s diagnosis. All that is required is for the medical practitioner to decide that the patient is excessively concerned with their somatic symptoms and their health. This is done using highly subjective and difficult to measure criteria for which very few independent reliability studies have been undertaken.

For patients with diseases that are poorly understood and misdiagnosed by the medical community, like ME/CFS, this will be disastrous. Once diagnosed inappropriately with SSD, the implications for diagnosis, treatment, disability and insurance will be profound…

Download Mary’s Call to action document here:

Word .docx format DSM-5 Response 2012

Word .doc format DSM-5 Response 2012 (MS 2004)

Update One from Dx Revision Watch January, 2012

Update One from Dx Revision Watch January, 2012

Dx Revision Watch
http://dxrevisionwatch.wordpress.com/

18 January 2012

When is the third and final public review of proposals for DSM-5 expected?

No firm date as yet. The DSM-5 Timeline still has a third and final review listed for January-February, for a two month long stakeholder review and comment period [2].

This information is outdated.

The APA has announced that its field trials are running behind schedule and some trials won’t now be completed until March, this year.

The third and final draft is now expected to be released for public review and comment, “no later than May 2012″, according to DSM-5 Task Force Vice-chair, Darrel Regier, MD [3].

I will update as more information becomes available about the posting of the third and final draft.

DSM-5 proposals with the most relevance for us are the proposals of the “Somatic Symptom Disorders” Work Group for the revision of existing DSM-IV “Somatoform Disorders” categories. The SSD Work Group’s current proposals can be found on the DSM-5 Development website [4].

DSM-5 Reform iPetition for professionals:

An Open Letter and Petition sponsored by an ad hoc committee of the Society for Humanistic Psychology (Division 32 of the American Psychological Association), in alliance with several other American Psychological Association Divisions, has attracted nearly 11,000 signatures with 40 mental health professional bodies and mental health organizations publicly endorsing the Open Letter [5].

The “Coalition for DSM-5 Reform” committee is calling on the American Psychiatric Association to submit its draft proposals for new categories and criteria for DSM-5 to independent scientific review.

Please note that the Society for Humanistic Psychology iPetition is for signing by mental health professionals and allied mental health professionals; it is not intended for signing by patients.

American Psychiatric Publishing serves “cease and desist” letters and threats of legal action against Suzy Chapman:

The site formerly operating under the subdomain dsm5watch.wordpress.com and known as DSM-5 and ICD-11 Watch is now known as Dx Revision Watch – Monitoring the development of DSM-5, ICD-11, ICD-10-CM and operating at http://dxrevisionwatch.wordpress.com/

The issuing of legal threats on behalf of the American Psychiatric Association, just before Christmas, has generated considerable interest and outrage amongst blogging mental health professionals [6].

I am collating commentaries from Allen Frances MD, who had chaired the DSM-IV Task Force, Bernard Carroll MD, Margaret Soltan PhD, Dan Carlat MD, Howard Brody MD, PhD, Jack Carney DSW, author Gary Greenberg, Steve Balt MD, Paula J. Caplan PhD, Mindhacks, Daniel Lende, 1 Boring Old Man (Mickey Nardo MD), James Gaulte MD, and advocates in Post #123, on this page of my site: http://wp.me/pKrrB-1Bi

References:

1] DSM-5 Development site

2] DSM-5 Timeline

3] DSM-5 Task Force Ponders Round 2 of Public Feedback, Deborah Brauser for Medscape Medical News, August 31, 2011

4] Somatic Symptom Disorders

Complex Somatic Symptom Disorder (CSSD) criteria

Simple Somatic Symptom Disorder (SSSD) criteria

Key documents:

       Disorders Description

       Rationale/Validity Propositions

5] Coalition for DSM-5 Reform (an ad hoc committee of the Society for Humanistic Psychology, Division 32 of the American Psychological Association) Open Letter and Petition for Professionals: http://dsm5-reform.com/

6] Coverage of APA’s threats of legal action against Suzy Chapman: http://wp.me/pKrrB-1Bi

Suzy Chapman
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