Coalition4ME/CFS issues Call to Action on DSM-5 proposals

June 9, 2011 by

Coalition4ME/CFS issues Call to Action on DSM-5 proposals

Post #88 Shortlink: http://wp.me/pKrrB-1aJ

On June 2, the Coalition4ME/CFS, which comprises eight US 305c registered patient organizations, issued a Call to Action for submissions to the DSM-5 Somatic Symptom Disorders Work Group.

Full Coalition4ME/CFS announcement: http://www.coalition4mecfs.org/News.html

Position paper (PDF): http://www.coalition4mecfs.org/DSM-5_Position_Paper_-_FInal2.pdf

Letter to the DSM-5 Task Force – Letter available for use to the public for submit to the task force: http://www.coalition4mecfs.org/DSM5letter.html

The Coalition4ME/CFS – a coalition of US ME/CFS non-profit organizations – has issued a Call to Action on the impending DSM-5 proposal and provided information to assist organizations and patients in writing their own letter to the American Psychiatric Association. The submission period ends June 15th.

THE COALITION ANNOUNCEMENT

DSM-5 Background:

Why this call to action is important to you:

Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). The criteria for a CSSD diagnosis include somatic symptoms that last more than 6 months and significantly disrupt life combined with the doctor’s assessment that the patient has a disproportionate concern about the medical seriousness of his symptoms. The guidelines also include recommendations of Cognitive Behavior Therapy (CBT) and antidepressants as the appropriate therapies.

CSSD could prove disastrous for the ME/CFS patient and for patients with other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. For doctors who view the ME/CFS patient as ‘just depressed’, it will be a small leap to decide that the patient has “disproportionate and persistent concerns about the medical seriousness of one’s symptoms” and, as a result, inappropriately diagnose CSSD. Once diagnosed with CSSD, the implications for diagnosis, treatment, disability and insurance will be profound.

The background and associated issues with the DSM-5 and CSSD can be found in the attached “Complex Somatic Symptom Disorders Position Paper” developed by the Coalition 4 ME/CFS.

What you can do:

The Coalition 4 ME/CFS has sent a response to the APA on this issue, which you can find here. (Feel free to use this letter as a template for your response). The DSM-5 team also needs to hear from as many of you as possible about your concerns. Feel free to draw from the Coalition 4 ME/CFS letter for your own comments. Remember, this must be done by June 15, 2011.

Here are the steps to follow to provide your input:

1. Register on the DSM-5 web site to make comments. The “Register Now” site is in the upper right hand corner of the DSM-5 home page. You will receive a confirmation email with a temporary password that you will have to click on to complete registration. If you have registered previously, you should still have an account and can log in in the same box.

2. Provide your comments directly on the CSSD page. It is probably easiest to create your comments outside of the interface and then copy them in. Bolding and other formatting appear to be lost when you copy your document in.

Thank you,

Coalition 4 ME/CFS

• Other Resources – Suzy Chapmans is an extensive resource for these issues; see Dx Revision Watch

• Check out other organizations letters in the comments below and on this page

The Coalition4ME/CFS consists of the

• CFS/Fibromyalgia Organization of Georgia, Inc.
• CFS Knowledge Center
• CFS Solutions of West Michigan
• PANDORA Inc. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
• Phoenix Rising
• Rocky Mountain CFS/ME & FM Association (RMCFA)
• Vermont CFIDS Association Inc.
• Wisconsin ME/CFS Association, Inc.

US ME/CFS Non-profit organizations are invited to join the Coalition.

Get on the Coalitions email list here: http://www.coalition4mecfs.org/contact.html

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Francis Creed, Functional Somatic Syndrome (FSS), Joel Dimsdale, MUS, Somatic Symptom Disorder, Somatoform Disorders

Action for M.E. publish news item on DSM-5

June 2, 2011 by

Action for M.E. publish news item on DSM-5

Post #87 Shortlink: http://wp.me/pKrrB-1a1

Yesterday, UK patient organization, Action for M.E., published an item around the DSM-5 proposals on its News pages and confirmed that it does intend submitting comment in the second DSM-5 public review exercise. Last year’s submissions from international organizations, professionals and patient advocates are collated on this page .

To the best of my knowledge, Action for M.E. is the only organization to have confirmed, so far, that it intends to submit comment in this second stakeholder review of draft criteria for the revision of DSM-IV.

The closing date for comments is June 15.

Register to submit feedback via the DSM-5 Development website: http://tinyurl.com/Somatic-Symptom-Disorders

More information on registration and submissions: http://tinyurl.com/DSM-5-register-to-comment

From the News pages of Action for M.E.

USA: complex somatic symptom disorder

01 June 2011

US patient organisations are lobbying against proposals to include a new psychiatric category, Complex Somatic Symptom Disorder (CSSD), in the American Diagnostic and Statistical Manual of Mental Disorders (DSM).

Version four of the manual (DSM-4) is under revision and version five (DSM-5) is due to be published May 2013.

The publication, which is produced by the American Psychiatric Association (APA), contains listings, definitions, and explanations of different psychiatric and psychological disorders.

In a letter last year, the CFIDS Association of America strongly urged the DSM-5 Task Force to abandon the proposed creation of CSSD saying:

The proposed DSM-5 revision correctly does not identify chronic fatigue syndrome (CFS) as a condition within the domain of mental disorders and the DSM. However, past discussions of the Somatic Symptoms Disorder Work Group have included such physiological disorders as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia as ‘somatic presentations of mental disorders.

…As drafted, the criteria for CSSD establish a ‘Catch-22’ paradox in which six months or more of a single or multiple somatic symptoms is classified as a mental disorder if the individual becomes ‘excessively’ concerned about his or her health.

The Massachusetts CFIDS/ME & FM Association says:

The way CSSD is defined makes it possible to either mistakenly or intentionally diagnose CFIDS/ME or Fibromyalgia in this psychiatric category. Moreover, the greater concern is whether this change could potentially lead to the reclassification of these illnesses as psychiatric conditions under CSSD.

The APA DSM-5 developmentsite says the draft is open for comment until 15 June.

UK campaigner Suzy Chapman has set up a website, Dx Revision Watch, which has further information.

Action for M.E. commented in response to the first consultation and will make a further representation in response to the second.

[Ends]

Filed under Action for M.E., American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders

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