Important notice from DSM-5 Development website (further extension to comment period)

Important notice from DSM-5 Development website (further extension to comment period)

Post #98 Shortlink: http://wp.me/pKrrB-1eW

DSM-5 Development

http://www.dsm5.org/Pages/Default.aspx

Friday, July 15th: We are experiencing some site difficulties and our system is unable to accept comments today. As this is the final day of our open comment period, we encourage you to submit your comments to dsm5@psych.org. We will make sure your comments, if posted by midnight, July 18th, are directed to the appropriate DSM work group(s) for their review. We apologize for the inconvenience and appreciate your contributions to this important diagnostic revision.

DSM-5 Web Site Period for Comments has Been Extended to July 15

DSM-5 Web Site Period for Comments has Been Extended to July 15

Post #93 Shortlink: http://wp.me/pKrrB-1cB

The comment period for the second public review and feedback on proposals for draft criteria for DSM-5 was scheduled to close at midnight, yesterday, June 15.

I noted this morning that it was still possible to upload comments.

This afternoon, the APA has posted a notice on the DSM-5 Development site announcing a four week extension for submission of comments, until Friday, July 15.

APA announcement, today, June 16:

http://www.dsm5.org/Pages/Default.aspx

DSM-5 Web Site Period for Comments has Been Extended to July 15!

We are extending the period for submitting comments and suggestions to the web site regarding the proposed diagnostic criteria revisions, and the newly proposed organizational structure for DSM-5. We are appreciative of the ongoing interest in contributing to this process and are extending the period for submitting comments until July 15th. This extension will also permit reviews and comments for the newly proposed criteria and approach for the assessment of Personality Disorders, which are now being uploaded to the website for release. Our thanks to those who have already provided contributions to this interactive process.

I expect the APA has not received sufficient numbers of responses to comfortably announce in a news release. (Last year they reported having received over 8,000.)

I had asked Dr William Narrow, Task Force member, on June 4, when the DSM-5 website was offline for much of the day, for an extension until at least the end of June.

The extension announced today runs to July 15. Even better!

So those of you who did not submit now have additional 4 weeks in which to submit responses.

I want to see thousands telling the APA why they need to rip up these proposals for the revision of the “Somatoform Disorders” and start again.

Copies of patient organizations, patient and advocates responses, plus the Coalition4ME/CFS’s template letter here: http://wp.me/PKrrB-19a

Thanks to all of you who have already submitted. 

Suzy Chapman

Related material:

Final push: DSM-5 draft criteria

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

Call for Action – Second DSM-5 public comment period

Final push: We have till Wednesday to submit comments on the DSM-5 draft criteria

Final push: We have till Wednesday to submit comments on the DSM-5 draft criteria

Post #90 Shortlink: http://wp.me/pKrrB-1bm

“So basically, they’re dumping some little-used, contentious and unpopular categories in a big bucket and stirring them up. The resulting mud could well end up sticking to us!”

If you only do two things online this week make it these:

1] Register to submit feedback via the DSM-5 Development website, here, and submit a letter of concern – however brief: http://tinyurl.com/Somatic-Symptom-Disorders

2] If you know an informed and sympathetic clinician, psychologist, allied health professional, lawyer, educator or social worker, contact them today and urge them to review these criteria and to submit a response as a concerned professional, or ask your state ME/CFS organization to submit a response.

The closing date for comments in the second DSM-5 public review is Wednesday, June 15

How many subscribers are there to the Co-Cure mailing list?

A couple of thousand?

And there are over 4,500 members of Phoenix Rising Forums. These usually very active forums are currently offline. Please use the time and energy you might have spent on Phoenix Rising to submit a comment.

We have the potential for several thousand more responses over the next three days.

OK, the APA issued no prior announcement of its intention to bring forward this second public review of draft criteria and so patient groups could not be alerted in advance. But alerts went out on May 5, the day after the latest criteria were posted on the DSM-5 Development site.

Nevertheless, many international patient organizations have been slow off the mark and some have been lukewarm about the need to submit, this year, or to submit, at all.

I’ve been banging on about the implications for these proposals for ME and CFS patients for two years, now, but where are the responses from our international patient organizations to these latest proposals?

Over two years ago, on May 13, 2009, I first reported on Co-Cure that the conceptual framework the DSM-5 Work Group for “Somatic Symptom Disorders” was proposing would:

“…allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.” [1]

(“Somatic” means “bodily” or “of the body”.)

The most recent version of the Disorders description document states:

“This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction…Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors.”

“These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met.”

“The symptoms may or may not be associated with a known medical condition. Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease.” [2]

 

Psychiatric creep

The APA appears hell bent on colonising the entire medical field by licensing the potential application of a mental health diagnosis to all medical diseases and disorders, if the clinician decides that the patient’s (or in the case of a child, a parent’s) response to their bodily symptoms and concerns about their health are “excessive”, or their perception of their level of disability “disproportionate”, or their coping styles “maladaptive.”

While the media has focussed on the implications for introducing new additions and broadening definitions of existing DSM diagnostic criteria, there has been no media scrutiny of these Work Group proposals nor recognition that this Work Group has been quietly redefining DSM’s “Somatoform Disorders” categories with proposals that will have the potential for a bolt-on diagnosis of a “somatic symptom disorder” for all medical diseases, whether “established general medical conditions or disorders”, like angina or diabetes, or conditions presenting with “somatic symptoms of unclear etiology.”

Yet these radical proposals for renaming the “Somatoform Disorders” category “Somatic Symptom Disorders” and combining a number of existing, little-used categories under a new umbrella term, “Complex Somatic Symptom Disorder (CSSD)”, and the more recently proposed “Simple Somatic Symptom Disorder (SSSD)”, have the potential for bringing thousands more patients under a mental health banner and expanding markets for psychiatric services, antidepressants and behavioural therapies such as CBT, for the “modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors” for all patients with somatic symptoms, irrespective of cause.

 

Sitting ducks

CFS, ME, Fibromyalgia and IBS patients are likely to get caught by these proposals.

CFS and ME patients already diagnosed or waiting for a diagnosis (which might take months or years) would be especially vulnerable to the highly subjective criteria and difficult to measure concepts like “disproportionate distress and disability”, “catastrophising”, “health-related anxiety” and “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome”, this Work Group is proposing.

Other patient groups bundled under the so-called “Functional somatic syndromes” and “medically unexplained” umbrellas, like Chemical Injury (CI), Chemical Sensitivity (CS), chronic Lyme disease and Gulf War Illness, would also be highly vulnerable to a CSSD label.

These proposals could potentially result in misdiagnosis of a mental health disorder, misapplication of an additional diagnosis of a mental health disorder, misapplication of “rehabilitation” therapies like GET or iatrogenic disease.

Families would be at risk of wrongful accusation of “over-involvement” or “excessive” concern for a child’s symptomatology or of encouraging “sick role behaviour” in a child or young person.

Application of these vague and highly subjective criteria may have considerable implications for the diagnoses assigned to patients, for the provision of social care, payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out.

The application of a diagnosis of CSSD may limit the types of treatment, medical investigations and testing that clinicians are prepared to consider and which insurers are prepared to fund.

 

International implications

This is not a US centric issue. The DSM is used to a varying extent in other countries in clinical settings. DSM criteria are currently used more often for research purposes than ICD-10 and the next edition will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients’ medical needs throughout the world.

Please make use of these last three days to tell the APA why the Somatic Symptom Disorders Work Group needs to rip up these proposals and start over again.

Links:

Proposed criteria are set out on the DSM-5 Development site here: http://tinyurl.com/Somatic-Symptom-Disorders

The CSSD criteria are here: http://tinyurl.com/DSM-5-CSSD

For examples of last year’s submissions, go here: http://wp.me/PKrrB-AQ

Copies of this year’s submissions are being collated here: http://wp.me/PKrrB-19a  

If you are a patient organization, professional, patient, carer or advocate and have already submitted and would like a copy of your comment added to my site, please send a copy to me.agenda@virgin.net

Submissions published to date for this second public review:

IACFS/ME (US);
ME Free For All.org (UK);
The Young ME Sufferers Trust (UK);
Coalition4ME/CFS (US);

Angela Kennedy, sociology lecturer (UK);
Dr John L Whiting MD, (Australia);

Kevin Short (UK)
Susanna Agardi (Australia)
Mary Barker (US);
Peter Kemp (UK);
Mary M. Schweitzer Ph.D., (US)

[1] “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report” was published in the June 2009 issue of the Journal of Psychosomatic Research. The journal is co-edited by DSM-5 Work Group members, Prof Francis Creed and Dr James Levenson. Full free text: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

[2] There are two key PDF documents: “Disorders Descriptions” and “Rationale”, which expand on the Work Group’s proposals:

              Disorders Description   Key Document One: “Somatic Symptom Disorders”

              Rationale Document     Key Document Two: “Justification of Criteria — Somatic Symptoms”

Suzy Chapman

IACFS/ ME Statement on DSM-5 Somatic Symptom Disorder

The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) Statement on DSM-5 Somatic Symptom Disorder

Post #89 Shortlink: http://wp.me/pKrrB-1b6

The closing date for comments in the second DSM-5 public review is June 15.

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

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

Copies of last year’s submissions here: http://tinyurl.com/DSM5submissions

Copies of this year’s submissions here: http://tinyurl.com/DSM5submissions2011

IACFS/ME

Dear Members and Colleagues:

I have submitted the comments below to the DSM-5 Work Group on Somatic Symptom Disorders. We are very concerned about the proposed new diagnosis, Complex Somatic Symptom Disorder, and its potential influence on physicians who see patients with CFS/ME.

Thank you.

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

To the DSM-5 Somatic Symptoms Disorders Work Group:

On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACFS/ME), I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

The Work Group’s well-reasoned points about DSM-IV somatoform disorders – that they are little used, confusing, and pejorative – do call for a re-evaluation. The question is: What should replace them? The new inclusive CSSD category attempts to offer a simplified and more inclusive diagnosis that may be more user-friendly to physicians and other health practitioners.

Our major concern is that the logic behind the new CSSD category is not informed by empirical data that directly examines the utility of this diagnosis in medical practice.

As stated by your Work Group: “A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. …Predictive validity of most of the diagnostic proposals has not yet been investigated.”

Given the absence of scientific validation of the CSSD diagnosis, the potential for unintended consequences is a serious concern. One such consequence is the possibility of over-diagnosis that may selectively affect patients with illnesses that are already not well understood such as CFS/ME. If the treating practitioner is skeptical about the severity or even  existence of CFS/ME, then the new criteria can be used to diagnose CSSD without reference to an underlying illness.

For instance, the CSSD criteria of (2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and (3) Excessive time and energy devoted to these symptoms or health concerns, would allow practitioners skeptical of CFS/ME to diagnosis the illness as an Axis I psychiatric disorder. This new psychological diagnosis may then narrow the physician’s focus and reduce the possibility of more effective management of the CFS/ME illness. Furthermore, the CSSD diagnosis may result in additional stigma for already marginalized patients with CFS/ME.

Over-diagnosis with CSSD may also arise from the broad generality of the new criteria and the absence of clear thresholds for patients to meet the criteria. As with somatization/somatoform disorders, when different criteria are used population prevalence varies from less than 1% for somatization disorder to an astonishing 79% for undifferentiated somatoform disorder (cited from Work Group online document). Arguably, the generality of the criteria for both undifferentiated somatoform disorder and CSSD suggests that CSSD may become a much more common (and potentially misapplied) diagnosis than the somatic symptom disorders that it replaces.

Finally, the CSSD diagnosis will not inform the clinician of CFS/ME-specific issues such as adverse reactions to treatment that are more likely in this hypersensitive population. By contrast, the CFS/ME diagnosis is useful for an array of illness related concerns that will assist the clinician in providing care for these medically under-served patients.

Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5. Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value. In its current form, we believe that the new diagnosis will do more harm than good.

Thank you.

Fred Friedberg

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

IACFS/ME
27 N. Wacker Drive, #416
Chicage, Illinois 60606
US

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

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

Index: Recent posts around DSM-5 second public review

Index: Recent posts around DSM-5 second public review

Post #84 Shortlink:  http://wp.me/pKrrB-18z

As a number of posts have been published recently on the DSM-5 public review, I am providing an Index:
 

5 May 2011  Post #73: http://wp.me/pKrrB-12k

American Psychiatric Association (APA) announces second public review of DSM-5 draft criteria and structure

Post announcing launch of second DSM-5 public review period with links to DSM-5 Development site and to media coverage.

6 May 2011  Post #74: http://wp.me/pKrrB-12x

APA News Release 4 May 2011: New Framework Proposed for Manual of Mental Disorders

Copy of APA News Release No. 11-27 announcing the posting on 4 May of revised draft criteria for DSM-5 on the DSM-5 Development website and a second public review period running from May to June 15.

8 May 2011  Post #75: http://wp.me/pKrrB-12P

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 1)

Part 1 of this report is a Q & A addressing some of the queries that have been raised with me around the DSM-5 public review process. Includes table comparing “Current DSM-IV Codes and Categories for Somatoform Disorders and ICD-10 Equivalents”. Also includes a screenshot from Chapter 5 (V) Somatoform Disorders (the F codes) F45 – F48.0 (as displaying in the iCAT Alpha Drafting platform in November 2010; this drafting platform has since been replaced by another public Alpha drafting browser launched on 17 May 2011 – see Post #81: ICD-11 Alpha Drafting platform launched 17 May (public version): http://wp.me/pKrrB-16N).

10 May 2011  Post #77: http://wp.me/pKrrB-13z

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 2)

In Part 2 of this report, I set out the latest proposals for draft criteria (dated 14 April 2011) from the DSM-5 Somatic Symptom Disorders Work Group, as published on the DSM-5 Development website, on 4 May.

12 May 2011  Post #78: http://wp.me/pKrrB-15q

Registering to submit comment in the second DSM-5 public review of draft criteria

Information on registering for and submitting comment in the second DSM-5 public review.

18 May 2011  Post #80: http://wp.me/pKrrB-15X

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 3)

In Part 3 of this report, I posted extracts from “Disorders Description”, the first of the two key PDF documents that accompany the revised proposals, highlighting passages in yellow to indicate why ME and CFS patient representation organizations, professionals and advocates need to register their concerns via this second public review.

22 May 2011   Post #82: http://wp.me/pKrrB-16B

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 4)

In Part 4 of this report, I posted the complete text of the key “Rationale” document that accompanies the draft proposals of the Somatic Symptom Disorders Work Group, omitting several pages of references to published and unpublished research papers.

22 May 2011   Post #83: http://wp.me/pKrrB-12d

Call for Action – Second DSM-5 public comment period closes June 15

Sets out why patients, patient organizations, advocates, clinicians, allied health professionals, lawyers and other professional end users need to review the proposals of the Somatic Symptom Disorders Work Group and submit responses. Includes copy of post in Word .doc and PDF formats.

Some of last year’s submissions are collated on this page: http://wp.me/PKrrB-AQ

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