Just three days left before second DSM-5 stakeholder review closes

Just three days left before second DSM-5 stakeholder review closes

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

On June 16, the American Psychiatric Association (APA) announced an extension to its second public stakeholder review of draft proposals for categories and criteria for the next edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be known as “DSM-5”.

The closing date for submissions is now Friday, July 15.

There are just three more days left in which to submit letters of concern in response to the potentially damaging proposals being put forward by the Work Group for “Somatic Symptom Disorders” – the DSM-5 committee charged with the revision of existing DSM-IV “Somatoform Disorders” categories. 

If you haven’t already submitted a comment, please do, however brief. You’ll find  information on making submissions in this post: http://tinyurl.com/DSM-5-register-to-comment.

Proposed criteria and two key documents are posted here: http://wp.me/pKrrB-13z.

For examples of letters of concern, copies of this year’s submissions, including the Coalition4ME/CFS’s resource materials and template letter, are collated here on my Dx Revision Watch site:

http://wp.me/PKrrB-19a 

These include letters of concern from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.

If you have already submitted but have other points to make, please submit a second response. 

If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the “Functional Somatic Syndromes” and “Medically Unexplained” umbrellas.

If the Work Group’s current proposals are approved, these illnesses will be sitting ducks for an additional “bolt-on” mental health diagnosis of a “Somatic Symptom Disorder”.

If you haven’t yet registered your concerns, please get a letter in before the feedback period closes on July 15!

Second DSM-5 public review of draft criteria

The closing date for comments in the second DSM-5 public review has been extended to July 15.

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

Once registered, log in with username and password and go to page: http://tinyurl.com/DSM-5-CSSD

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

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Recent posts on Dx Revision Watch site around DSM-5 second public review

Recent posts on Dx Revision Watch site around DSM-5 second public review

Shortlink: http://wp.me/p5foE-3j7

A number of posts have been published recently on Dx Revision Watch, sister site to ME agenda, around the DSM-5 public review, so 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.

29 May 2011   Post #85: http://wp.me/pKrrB-19o 

Submissions to the first DSM-5 stakeholder review (February to 20 April 2010)

Full copy of the submission made in last year’s DSM-5 public review, by Kenneth Casanova, Board member and past President, Massachusetts CFIDS/ME & FM Association.

29 May 2011   Post #86: http://wp.me/pKrrB-19G

Final Call for Action by UK patient orgs – Second DSM-5 public comment period closes 15 June

2 June 2011   Post #87: http://wp.me/pKrrB-1a1

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

Submissions for the 2010 public review are collated here: http://wp.me/PKrrB-AQ

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

Second DSM-5 public comment period closes 15 June: Final Call for Action by UK patient orgs

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

This communication has been sent to the following organizations:

Action for M.E.; The ME Association; AYME; The Young ME Sufferers Trust; The 25% ME Group; RiME; Invest in ME; BRAME; ME Research UK; Mrs Sue Waddle

[Update: On June 1, Action for M.E. published a news item on DSM-5 confirming that it does intend to submit a response.]

Final Call for Action by UK patient organizations

 

Second DSM-5 public comment period closes 15 June

29 May 2011

The above organizations were alerted to this second public review period on 5 May, the day after revised criteria were posted on the American Psychiatric Association’s DSM-5 Development website.

To date, not one patient organization in the UK has confirmed to me that they intend to submit feedback, this year. Please take some time to review these proposals and prepare a submission or consider submitting a joint response with another UK patient organization.

The American Psychiatric Association (APA) DSM-5 Task Force is again accepting public comment on the latest proposals for the revision of DSM diagnostic criteria for psychiatric disorders.

The deadline for this second stakeholder feedback period is June 15 – less than three weeks away!

Is this a US specific issue?

No. UK and international input is required from patient organizations.

The DSM-5 “Somatic Symptom Disorders” Work Group has responsibility for the revision of the existing DSM-IV “Somatoform Disorders” categories. Two UK Professors of psychological medicine and research, Professor Michael Sharpe and Professor Francis Creed, are members of the Somatic Symptom Disorders Work Group.

The Diagnostic and Statistical Manual of Mental Disorders is the primary diagnostic system in the US for defining mental disorders and is used to varying extent in other countries. The next edition of the manual is scheduled for publication in 2013 and will inform health care providers and policy makers for many years to come. DSM-5 will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients’ medical needs throughout the world.

All UK patient organizations need to submit responses in this second review, even if they submitted last year. The latest key documents that expand on the proposals are attached for ease of reference. (Note: These documents have been revised several times since last year’s public review. Yellow highlighting has been applied by the Work Group to indicate edits and revisions between these latest versions and the texts as they had stood, earlier this year.)

What is being proposed?

The DSM-5 “Somatic Symptom Disorders” Work Group is recommending renaming the “Somatoform Disorders” section to “Somatic Symptom Disorders” and combining the existing categories – “Somatoform Disorders”, “Psychological Factors Affecting Medical Condition (PFAMC)” and possibly “Factitious Disorders”, into one group.

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

The Work Group also proposes combining “Somatization Disorder”, “Hypochondriasis”, “Undifferentiated Somatoform Disorder” and “Pain Disorder” under a new category entitled “Complex Somatic Symptom Disorder” (CSSD). There is also a “Simple or Abridged Somatic Symptom Disorder” (SSSD) and a proposal to rename “Conversion Disorder” to “Functional Neurological Disorder”.

If the various proposals of the Somatic Symptom Disorders Work Group were approved, there are considerable concerns that patients with a diagnosis of CFS, ME or PVFS, or awaiting diagnosis, would be vulnerable to the application of an additional “bolt-on” mental health diagnosis of a Somatic Symptom Disorder like “CSSD”, “SSSD” or “PFAMD”, or of misdiagnosis with a Somatic Symptom Disorder.

Because the APA and the WHO have a joint commitment to strive for harmonization between category names, glossary descriptions and criteria for DSM-5 and the corresponding categories in Chapter 5 of the forthcoming ICD-11, there could be implications for the revision of the “Somatoform Disorders” section of ICD-10 and therefore implications for UK patients – both adults and children.

Where can I find the full criteria for “CSSD”, “PFAMC” and other proposed categories?

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

There are two key PDF documents, “Disorders Descriptions” and “Rationale”, which expand on the Work Group’s proposals (attached for your convenience)

    Disorders Description   Key Document One: “Somatic Symptom Disorders”

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

 

Which patient groups might be hurt by these proposals?

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the US Secretary of Health and Human Services (HHS). On Day One of the May 10-11 CFSAC meeting, CFSAC Committee discussed the implications of these proposals for CFS, ME and Fibromyalgia patients as part of the agenda item around concerns for the proposed coding of CFS for the forthcoming ICD-10-CM.

If the Work Group’s proposals gain DSM Task Force approval, all medical diseases, whether “established general medical conditions or disorders”, like diabetes or heart disease, or conditions presenting with “somatic symptoms of unclear etiology” will have the potential for an additional diagnosis of a “somatic symptom disorder” – if the clinician considers that the patient’s response to their bodily symptoms and concerns about their health or the perception of their level of disability is “disproportionate”, or their coping styles, “maladaptive.”

But as discussed by CFSAC Committee members, patients with CFS, ME, Fibromyalgia and IBS (the so-called “Functional somatic syndromes”) may be especially vulnerable to the highly subjective criteria and difficult to measure concepts such as “disproportionate distress and disability”, “catastrophising”, “health-related anxiety” and “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome.”

In a 2009 Editorial on the progress of the Work Group, the Work Group Chair wrote that by doing away with the “controversial concept of medically unexplained”, their proposed classification might diminish “the dichotomy, inherent in the ‘Somatoform’ section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease.” The conceptual framework the Work Group proposes:

“…will 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.”

In its latest proposals, the Work Group writes:

“…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…”

“…Patients with this diagnosis tend to have very high levels of health-related anxiety. They appraise their bodily symptoms as unduly threatening, harmful, or troublesome and often fear the worst about their health. Even when there is evidence to the contrary, they still fear the medical seriousness of their symptoms. Health concerns may assume a central role in the individual’s life, becoming a feature of his/her identity and dominating interpersonal relationships.”

These proposals could result in misdiagnosis of a mental health disorder or the misapplication of an additional diagnosis of a mental health disorder in patients with CFS and ME. There may be considerable implications for these highly subjective criteria for the diagnoses assigned to patients, the provision of social care, the payment of employment, medical and disability insurance, the types of treatment and testing insurers and health care providers are prepared to fund, and the length of time for which insurers are prepared to pay out.

Dual-diagnosis of a “general medical condition” or a so-called “functional somatic syndrome” plus a “bolt-on” diagnosis of a “Somatic symptom disorder” may bring thousands more patients, potentially, under a mental health banner where they may be subject to inappropriate treatments, 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 and promote more effective coping [with their somatic symptoms].”

Who should submit comment on these proposals?

All stakeholders are permitted to submit comment and the views of patients, carers, families and advocates are important.

But evidence-based submissions from the perspective of informed medical professionals – clinicians, psychiatrists, researchers, allied health professionals, lawyers and other professional end users are likely to have more influence. Patient organizations also need to submit comment.

Where can I read last year’s submissions?

Copies of international patient organization submissions for the first DSM-5 public and stakeholder review are collated on this page of my site, together with selected patient and advocate submissions:

DSM-5 Submissions to the 2010 review: http://wp.me/PKrrB-AQ

How to comment:

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

This is the last alert I shall be sending out. I hope all UK patient organisations will take this opportunity to submit their concerns.

Remember, the deadline is June 15.

Thank you.

Suzy Chapman
http://dxrevisionwatch.wordpress.com

DSM-5 submissions collated on Dx Revision Watch site

DSM-5 submissions collated on Dx Revision Watch site

Shortlink: http://wp.me/p5foE-2S0

The American Psychiatric Association (APA) public review and comment period on its draft proposals for diagnostic criteria for DSM-5 closed on 20 April.

I have been collating copies of submissions on a dedicated page on my Dx Revision Watch site, here:

http://wp.me/PKrrB-AQ

Patient organisations, professionals and advocates who submitted comments and responses to the draft proposals are invited to provide copies of their submissions for publication.  Forward copies to me.agenda@virgin.net or via the Dx Revision Watch Contact form.

International patient organisations submissions:

Whittemore Peterson Institute, Steungroep CFS Netherlands, CFS Associazione Italiana, ME Association, Action for M.E., Invest in ME, Mass. CFIDS/ME & FM, The CFIDS Association of America, Vermont CFIDS Association, IACFSME, The 25% ME Group

Patient advocate submissions:

Suzy Chapman UK (2), Tammie Page M.A. US, LH Seth US, Patient advocate US, John Mizelle, Therapist US, Peter Kemp UK, Ian McLachlan UK, Andrew US, Mary M. Schweitzer PhD US

On 20 April, the APA issued this News Release:

http://tinyurl.com/DSM5reviewcloses

or open PDF here:  APA Closes Public Comment Period for DSM-5 Release No. 10-31

For Information Contact:

Eve Herold, 703-907-8640

press@psych.org  Release No. 10-31

Jaime Valora, 703-907-8562

jvalora@psych.org

EMBARGOED For Release Until: April 20, 2010, 12:01 AM EDT

APA Closes Public Comment Period for Draft Diagnostic Criteria for DSM-5

DSM-5 Work Groups to Review Comments

ARLINGTON, Va. (April 20, 2010) -The American Psychiatric Association received 6,400 comments on a draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders during a 2½ month public comment period, which ends today.

“This period of public review and comment of diagnostic criteria is unprecedented in both the field of psychiatry and in medicine,” said Alan F. Schatzberg, M.D., president of the American Psychiatric Association. “It demonstrates the APA’s commitment to an inclusive and transparent process of development for DSM-5.”

The criteria have been available for comment since they were published online on Feb. 10. The draft criteria will continue to be available for review on the DSM-5 Web site, www.dsm5.org , and updates to the draft will be posted on an ongoing basis. The public will have another opportunity to comment on the criteria and any changes after the first round of field trials.

A number of clinicians, researchers and family and patient advocates participated in the public comment period, contributing more than 6,400 comments on various aspects of DSM-5.

All comments submitted via the Web site were assigned to a topic-specific expert from one of the thirteen DSM-5 work groups for review. In their review, work group members will note submissions that need additional consideration from the work group as a whole. Upon evaluation from the entire work group, draft criteria may be revised.

For example, the Eating Disorders Work Group has proposed additional revisions to criteria for Anorexia Nervosa and Bulimia Nervosa based on comments received.

“The goal of DSM-5 is to create an evidence-based manual that is useful to clinicians and represents the best science available,” said David J. Kupfer, M.D., DSM-5 Task Force chair.

“The comments we received provide the task force and work groups with additional information and perspectives, ensuring that we have fully considered the impact any changes would have on clinical practice and disorder prevalence, as well as other real-world implications of revised criteria.”

Most of the comments that were submitted were diagnosis-specific, while nearly one-fourth were general. Distribution of the comments varied across the 13 work groups.

The work groups with the largest number of submitted comments include:

. Neurodevelopmental Disorders Work Group (23% of comments)

. Anxiety Disorders Work Group (15% of comments)

. Psychosis Disorder Work Group (11% of comments)

. Sexual and Gender Identity Disorders (10% of comments)

Following a review of all submitted comments and possible revisions to the draft criteria, the APA will begin a series of field trials to test some of the proposed diagnostic criteria in clinical settings. The proposed criteria will continue to be reviewed and refined over the next two years.

Final publication of DSM-5 is planned for May 2013

[Ends]

Mary Schweitzer letter to the APA on Complex Somatic Symptom Disorder (CSSD)

Mary Schweitzer letter to the APA on Complex Somatic Symptom Disorder (CSSD)

Shortlink: http://wp.me/p5foE-2RD

Mary Schweitzer

13 April 2010

There are only a few days left to comment on the proposed new category of Complex Somatic Symptom Disorder (CSSD) for the APA’s new DSM-5. To read about the proposed new classification, go to the following website:

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

Instructions for comments are on the bottom of the page. You have to register, but that’s not difficult.

We have only until April 20 to leave a comment.

Many organizations connected to ME and CFS advocacy have sent testimony – all should. This could be very dangerous. To begin with, psychiatric treatment is not going to help the biomedical foundation of the disease, so the misdiagnosis would lead to maltreatment. But there are other concerns as well. If “CFS” was promoted as the psychological illness CSSD, patients would be subject to the restrictions insurance companies place on mental disorders. Most health insurance plans do not cover more than a few doctor’s visits per year for a mental illness, if they cover any at all; most disability insurance plans only cover mental illnesses for 3-5 years, if they cover them at all. This is, of course, a great injustice to those with mental illnesses. But that injustice would not be improved by adding patients with “CSSD” to the mix.

My own comments can be found here:

http://slightlyalive.blogspot.com/2010/04/my-letter-to-apa-on-cssd.html

Mary Schweitzer

Allen Frances MD on DSM-5 draft proposals and comment: Psychology Today

Allen Frances MD on DSM-5 draft proposals and comment: Psychology Today

Shortlink: http://wp.me/p5foE-2Ry

Over the past 12 months, Allen Francis MD has published a series of often controversial commentaries on the DSM revision process in the media, via Psychiatric Times website and yesterday, on the site of Psychology Today.

Dr Frances had been chair of the DSM-IV Task Force and of the department of psychiatry at Duke University School of Medicine, Durham, NC. He is currently professor emeritus at Duke.

I have had a comment published, this morning, in response to his latest piece on Psychology Today.

Blogs
DSM5 in Distress

The DSM’s impact on mental health practice and research.
by Allen Frances, MD

DSM5: An Open Process Or Bust
The next steps need help from the field and public.
Published on April 12, 2010

“The first drafts of DSM5 were posted two months ago, allowing the field and the public a first glimpse into what had previously been an inexplicably secretive process. Today is the last day for public comment on these drafts…”

Read full text here

Comments

Public review process

Submitted by Suzy Chapman on April 13, 2010 – 3:24am.

I would like to thank Dr Frances for his commentaries around the DSM revision process. I hope he won’t mind my highlighting that draft proposals are out for review until Tuesday, 20 April – so there is another week during which health professionals, researchers, patient organisations and the lay public can input into the review process.

For some time now, professionals in the field, interest groups and the media have voiced concerns that the broadening of criteria for some DSM-5 categories would bring many more patients under a mental health diagnosis.

But if the draft proposals of the “Somatic Symptom Disorders” Work Group were to be approved there will be medical, social and economic implications to the detriment of all patient populations and especially those bundled by many within the field of liaison psychiatry and psychosomatics under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas, under which they include Chronic fatigue syndrome, ME, Fibromyalgia, IBS, chemical injury, chemical sensitivity, chronic Lyme disease, GWS and others [1].

There is considerable concern amongst international patient organisations for the implications of the “Somatic Symptom Disorders” Work Group proposal for combining Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC), and Factitious Disorders under a common rubric called “Somatic Symptom Disorders” and for the creation of a new classification, “Complex Somatic Symptom Disorder” (CSSD).

They are particularly concerned for patients living with conditions characterised by so-called “medically unexplained symptoms” or with medical conditions for which diagnostic tests are currently lacking that provide evidence substantiating the medical seriousness of their symptoms and the need for provision of appropriate medical investigations, treatments, financial and social support, and in the case of children and young people, the putting in place of arrangements for the education of children too sick to attend mainstream school.

According to “Somatic Symptom Disorders” Work Group proposals:

[Criteria superceded by third draft criteria.]

The CFIDS Association of America has submitted: “As drafted, the criteria for CSSD establish a “Catch 22” paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment.” [2]

To date, there has been little public discussion by professionals or the media of the medical, social and economic implications for patients of the application of an additional diagnosis of “Complex Somatic Symptom Disorder”.

With a week to go before this initial public review period closes there is still time and I urge professionals and stakeholders to scrutinise the proposals of the “Somatic Symptom Disorder” Work Group and to submit their concerns to the Task Force.

Suzy Chapman, UK patient advocate

[1] Marin H, Escobar JI: Unexplained Physical Symptoms What’s a Psychiatrist to Do? Psychiatric Times. Aug 2008, Vol. 25 No. 9 http://www.psychiatrictimes.com/display/article/10168/1171223

[2] CFIDS Association of America submission to DSM-5 public review:
http://www.cfids.org/advocacy/2010/dsm5-statement.pdf

—————————

Related material:

PULSE Today

Managing medically unexplained symptoms, 07 Apr 10

—————————

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 register 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 DSM5.org website: http://www.dsm5.org/Pages/Default.aspx

Somatoform Disorders:
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

Proposed new DSM-5 category: Complex Somatic Symptom Disorder
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

Two Key PDF documents are associated with proposals:

 PDF Somatic Symptom Disorders Introduction DRAFT 1/29/10

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

The Alpha Draft for ICD-11 is scheduled for May 2010. I shall be posting again shortly around the ICD-11 revision process.

CFIDS Association of America submits response to DSM-5 draft proposals

CFIDS Association of America submits response to DSM-5 draft proposals

Shortlink Post: http://wp.me/p5foE-2Rp

Submissions

Patient organisations, professionals and advocates submitting comments in the DSM-5 draft proposal review process are invited to provide copies of their submissions for collation on this page: http://wp.me/PKrrB-AQ

The CFIDS Association of America

Working to make CFS widely understood, diagnosable, curable and preventable

The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association for release in 2013. Creation of a new category called “Complex Somatic Symptom Disorder” has generated concern and the CFIDS Association submitted its statement on April 1.

The APA will accept public comments until April 20 at http://www.dsm5.org/Pages/Default.aspx

Open PDF here on the CFIDS site:

or here on ME agenda: CFIDS DSM-5 Statement

The CFIDS Association of America

The CFIDS Association of America

April 1, 2010

DSM-5 Task Force

American Psychiatric Association
1000 Wilson Boulevard
Suite 1825
Arlington, VA 22209

Members of the DSM-5 Task Force,

In response to an open request for input on proposed changes to the fifth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the CFIDS Association of America submits the following statement and urgent recommendation.

The CFIDS Association strongly questions the utility of the proposed rubric of complex somatic symptom disorder (CSSD). According to the DSM-5 website

(http://www.dsm5.org/Documents/Somatic/APA%20Somatic%20Symptom%20Disorders%20description%20January29%202010.pdf, accessed March 28, 2010):

[Criteria superceded by third draft May 2012.]

The creation of CSSD appears to violate the charges to DSM-5 Work Groups to clarify boundaries between mental disorders, other disorders and normal psychological functioning

(http://www.dsm5.org/about/Pages/faq.aspx, accessed March 28, 2010). This is especially true with regard to patients coping with conditions characterized by unexplained medical symptoms, or individuals with medical conditions that presently lack a mature clinical testing regimen that provides the evidence required to substantiate the medical seriousness of their symptoms. For instance, all of the case definitions for CFS published since 1988 have required that in order to be classified/diagnosed as CFS, symptoms must produce substantial impact on the patient’s ability to engage in previous levels of occupational, educational, personal, social or leisure activity. Yet, all of the case definitions rely on patient report as evidence of the disabling nature of symptoms, rather than results of specific medical tests. So by definition, CFS patients will meet the CSSD criteria A and C for somatic symptoms and chronicity, and by virtue of the lack of widely available objective clinical tests sensitive and specific to its characteristic symptoms, CFS patients may also meet criterion B-4.

As drafted, the criteria for CSSD establish a “Catch-22” paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment.

To provide another common example, back pain that is debilitating and severe, with negative MRIs, is still debilitating and severe back pain. A patient in this situation might be concerned about this back pain, might view it as detrimental to his quality of life and livelihood, and might direct time and resources to seeking care from multiple specialists (e.g., neurology, rheumatology, orthopedics, rehabilitation) to relieve it. Each of these specialists is likely to recommend slightly different therapies, compounding the patient’s focus on alternative explanations for and long-term impact of decreased function and diminished health. Such a patient could be diagnosed with CSSD, yet no empiric evidence has been provided by the Somatic Symptoms Disorders Work Group that applying the label of CSSD will facilitate communication with the patient, add clinical value to the patient’s experience, or improve the care any of these various specialists might provide.

The Somatic Symptoms Disorder Work Group states that patients fitting these criteria are generally encountered in general medical settings, rather than mental health settings

(http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368, accessed March 28, 2010), further limiting the usefulness of this classification in a manual written primarily for the benefit of mental health professionals.

The Somatic Symptoms Disorders Work Group conveys considerable uncertainty about the impact of this new label, in spite of the charge to all DSM-5 work groups to demonstrate the strength of research for the recommendations on as many evidence levels as possible. The Somatic Symptoms Disorders Work Group states:

“It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.”

(http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368, accessed March 28, 2010)

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

(http://www.dsm5.org/Research/Pages/SomaticPresentationsofMentalDisorders%28September6-8,2006%29.aspx)

as “somatic presentations of mental disorders.” None of the research and/or clinical criteria for chronic fatigue syndrome published since 1988 have established CFS as a mental disorder and a continuously growing body of literature demonstrates CFS to be a physiological disorder marked by abnormalities in the central and autonomic nervous systems, the immune system and the endocrine system. The role of infectious agents in the onset and/or persistence of CFS has received renewed attention since the DSM-5 revision process began in 1999. Most recently, the October 2009 report of evidence of a human retrovirus, xenotropic murine leukemia-related retrovirus (XMRV), in CFS patients in Science (Lombardi, 2009) has generated new investigations into this and other infectious agents in CFS.

The conceptual framework for CFS detailed in the “Clinical Working Case Definition, Diagnostic and Treatment Protocols” (Carruthers, 2003) serves as a useful tool for professionals to establish a diagnosis of CFS, address comorbidities that may complicate the clinical presentation and distinguish CFS from conditions with overlapping symptomotology. Research on CFS continues to explore and document important biomarkers. Lack of known causation does not make CFS – or the CFS patient’s illness experience – psychopathological any more than multiple sclerosis, diabetes, or other chronic illnesses with objective diagnostic measures, would be so considered.

For the reasons stated above and the general failure of the proposed creation of the CSSD to satisfy the stated objectives of the DSM-5 without risking increased harm to patients through confusion with other conditions or attaching further stigma, the CFIDS Association strongly urges the DSM-5 Task Force to abandon the proposed creation of CSSD.

Sincerely,

K. Kimberly McCleary

President & CEO

The CFIDS Association of America

IACFSME publishes submission to DSM-5 public review process

IACFSME (International Association for CFS/ME) publishes submission to DSM-5 public review process

Shortlink: http://wp.me/p5foE-2R9

Today, 25 March the IACFSME issued an alert for international CFS and ME professionals and published a copy of the organisation’s own submission in the DSM-5 public review process. 

Notice from IACFSME: DSM-5 May Include CFS as a Psychiatric Diagnosis

“The DSM-5 Task Force of the American Psychiatric Association is asking for public comment to their proposed DSM-5 manual of psychiatric diagnoses scheduled for release in 2013. We are concerned about the possibility of CFS/ME being classified as a psychiatric disorder, based on comments made in their Work Group on somatoform disorders (see letter below). Of course, such an action would be a major setback in our ongoing efforts to legitimize and increase recognition of the illness…”

The IACFSME notice and submission can be read here on DSM-5 and ICD-11 Watch or here on the IACFSME site .

 

Submissions by US patient organisations

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.

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

Submissions by UK patient organisations

On 4 March, I contacted seven national UK organisations.  I will update on responses received, so far, in the next couple of days. The following UK patient representative and research organisations have been contacted:

Action for M.E.
ME Association
AYME
The Young ME Sufferers Trust
Invest in ME
The 25% ME Group
ME Research UK

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 in the DSM-5 public review process. 

If the proposals of the “Somatic Symptom Disorders” Work Group were to be approved there will be medical, social and economic implications to the detriment of all patient populations – especially those bundled by many psychiatrists under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas, under which they include CFS, ME, FM, IBS, CI, CS, chronic Lyme disease, GWS and others.

Register here: http://www.dsm5.org/Pages/Registration.aspx

Related information:

[1] APA’s new DSM-5 Development webpages: http://www.dsm5.org/Pages/Default.aspx

[2] Somatoform Disorders: http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

[3] Complex Somatic Symptom Disorder (CSSD):
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

[4] Key documents:

 PDF Somatic Symptom Disorders Introduction DRAFT 1/29/10

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

CFIDS Association calls for input from experts into DSM-5 review process

CFIDS Association calls for input from experts into DSM-5 review process

Shortlink: http://wp.me/p5foE-2Pa

Image Source: Academy of Psychosomatic Medicine, Nevada, November ‘09 Annual Meeting slide presentation, Francis Creed, MD, FRCP: Can We Now Explain Medically Unexplained Symptoms? See this posting

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:

Extract:

Advocacy Counts

“The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association (APA). The proposed revision, DSM5, has drawn media coverage and close scrutiny since its release on Feb. 10. Creation of a new category called “Chronic Somatic Symptoms Disorder” is of particular concern to CFS patients and organizations. The Association is seeking input from outside experts and will submit a review of the biological abnormalities in CFS to APA. The APA will accept public comments until April 20.”

Note that the proposed new classification is Complex Somatic Symptom Disorder (CSSD)” and not Chronic Somatic Symptoms Disorder” as given above; CFIDS has been advised.

The DSM-5 Work Group for “Somatic Symptom Disorders” is proposing 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 classification “Complex Somatic Symptom Disorder (CSSD).”

The DSM-5 public review period runs from 10 February to 20 April, so there are just over six weeks during which stakeholders in DSM-5 – that’s members of the public, patient representation organisations, professionals and other end users can submit their responses.

Please take this opportunity to submit a response and to alert and encourage professionals and international patient organisations to participate. Key links are provided at the end of this posting.

The following UK organisations have so far been silent on the DSM-5 proposals:

All seven organisations have been contacted, today, for position statements on whether they intend to submit a response and if so, whether their responses will be published:

Action for M.E.
The ME Association:
AYME
The Young ME Sufferers Trust,
The 25% M.E. Group
Invest in ME: Intend to submit a response and to publish
ME Research UK

I would welcome copies of submissions from any patient organisations, professionals and advocates for publication on a dedicated page, here, on DSM-5 and ICD-11 Watch site:

Go here to read Mary M. Schweitzer’s Submission to the Work Group for Somatic Symptom Disorders.

To submit a comment online register here:

APA’s new DSM-5 Development site: http://www.dsm5.org/Pages/Default.aspx

You can also register via a link at the bottom of each proposal, for example, at the bottom of this key page:

Complex Somatic Symptom Disorder (CSSD)

Note that if you are viewing proposals from this page:

http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

you won’t see the page for:

“Psychological Factors Affecting Medical Condition”

This is one of the DSM-IV categories that the Work Group is proposing should be combined with several other current categories under “Somatic Symptom Disorders”.

In order to view this page, the Proposed Revision, Rationale and other Tabs, or if you wished to submit a comment specifically in relation to this proposal, this is the URL:

316 Psychological Factors Affecting Medical Condition

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=387

There are two key PDF documents associated with proposals for the DSM categories currently classified under “Somatoform Disorders”:

Key Document: Full Disorder Descriptions PDF: APA Somatic Symptom Disorders description January29 2010

Key Document: Full Rationale PDF: APA DSM Validity Propositions 1-29-2010

These provide an overview of the new proposals and revisions and a “Justification of Criteria” rationale document. I would recommend downloading these if intending to make a submission.

Related information:

[1] APA’s new DSM-5 Development webpages

[2] Somatoform Disorders:
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

[3] Complex Somatic Symptom Disorder (CSSD) [Ed: Proposed new category]
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

[4] Psychological Factors Affecting Medical Condition [Ed: Proposed for revision]
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=387

[5] Key PDF documents:

PDF A] Somatic Symptom Disorders Introduction DRAFT 1/29/10
http://www.dsm5.org/Documents/Somatic/APA%20Somatic%20Symptom%20Disorders%20description%20January29%202010.pdf

PDF B] Justification of Criteria – Somatic Symptoms DRAFT 1/29/10
http://www.dsm5.org/Documents/Somatic/APA%20DSM%20Validity%20Propositions%201-29-2010.pdf

[6] For more information see my DSM-5 and ICD-11 Watch site, DSM-5 proposals page: http://wp.me/PKrrB-jZ

New posts on Dx Revision Watch site

New posts on DSM-5 and ICD-11 Watch site

Shortlink: http://wp.me/p5foE-2Ou

DSM-5 Development Timeline

15 February | Shortlink Post #18: http://wp.me/pKrrB-zf

DSM-5 Psychiatric/General Medical Interface Study Group

15 February | Shortlink Post #19: http://wp.me/pKrrB-zC

Two key DSM-5 draft proposal documents (Somatic Symptom Disorders)

16 February | Shortlink Post #20: http://wp.me/pKrrB-zN

Submitting comments in the DSM-5 Draft Proposal review process

17 February | Shortlink Post #21: http://wp.me/pKrrB-AB

Submissions in response to proposals by the DSM-5 Work Group for Somatic Symptom Disorders

23 February | Shortlink Post #22: http://wp.me/pKrrB-BX