Live streaming of CFSAC Meeting (US) today, 10-11 May

Live streaming of CFSAC Meeting (US) today, 10-11 May

Post #76 Shortlink: http://wp.me/pKrrB-14n

Chronic Fatigue Syndrome Advisory Committee (CFSAC)
May 10-11, 2011
Room 800, Hubert H. Humphrey Building
200 Independence Ave, S.W.
Washington, D.C. 20201

A reminder that Day One of the two day spring CFSAC meeting will be streaming live today.

A copy of the Meeting Agenda is published in this post:

CFSAC Spring 2011 Meeting Agenda (May 10-11): http://wp.me/pKrrB-126

Public and Written Testimonies can be read and downloaded from this page of the CFSAC website:

http://www.hhs.gov/advcomcfs/meetings/presentations/05102011.html

The meeting proceedings can be watched live at this page (Requires Windows Media Player version 9 or higher or Silverlight Player installed): http://nih.granicus.com/ViewPublisher.php?view_id=26

The archived videocasts have had simultaneous subtitles.

The meeting opens at 9.00am Washington D.C. time (which is around 5 hours time difference with UK).  So streaming should commence  about five minutes before 2.00pm UK time (usually the microphones are switched off until just before the meetings starts, so anticipate video only until the meeting is called to order).

ICD-10-CM proposed coding issue

I am very pleased that the issue of the proposed coding for CFS in the forthcoming ICD-10-CM (a US specific “Clinical Modification” of ICD-10 scheduled for implementation in October 2013 and subject to a partial code freeze, in October 2011) has been placed back on the agenda and that an hour’s time has been tabled for discussion of this important item.

Discussion of ICD-10-CM is tabled to start at 1.15pm Washington D.C. time (6.15pm UK time).

1:15 p.m. Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns     Committee Members

During the Public Testimony sessions, US patient and patient advocate, Mary Schweitzer, Ph.D., will be speaking about the CDC and also references the ICD-10-CM coding issue:

http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_schweitzer.pdf

[…]

NCHS, within CDC, is overseeing the development of ICD-10-CM. We need to keep CFS in the same code as in ICD-10 – under neurology, at G93.3. That’s where it is in WHO’s index to ICD-10 – adopted by over one hundred nations. It’s also under G93.3 in the tabular versions of the clinical modifications produced by Canada, Germany, and Australia. It should not be placed in R53.82, under “vague signs and symptoms.” We would be the only nation to have CFS in R53.82. Why?

A one page handout outlining the ICD-10-CM coding issue is being circulated at the meeting and can be read here: CFSAC Handout ICD-10-CM 10 May 2011

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

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

Post #32 Shortlink: http://wp.me/pKrrB-Fj

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:

“To meet criteria for CSSD, criteria A, B, and C are necessary.

A. Somatic symptoms:

Multiple somatic symptoms that are distressing, or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.

(2) Normal bodily symptoms are viewed as threatening and harmful

(3) A tendency to assume the worst about their health (catastrophizing).

(4) Belief in the medical seriousness of their symptoms despite evidence to
the contrary.

(5) Health concerns assume a central role in their lives

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic and persistent (at least six months).”

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: Submission for DSM-5 public review process

CFIDS Association of America: Submission for DSM-5 public review process

Post #31 Shortlink: http://wp.me/pKrrB-EP

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 2010, at: http://www.dsm5.org/Pages/Default.aspx

Open PDF here on the CFIDS site or here on Dx Revision Watch: 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):

To meet criteria for CSSD, criteria A, B, and C are necessary.

A. Somatic symptoms:

Multiple somatic symptoms that are distressing, or one severe symptom

B. Misattributions, excessive concern or preoccupation with symptoms and illness: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.

(2) Normal bodily symptoms are viewed as threatening and harmful

(3) A tendency to assume the worst about their health (catastrophizing).

(4) Belief in the medical seriousness of their symptoms despite evidence to the contrary.

(5) Health concerns assume a central role in their lives

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is chronic and persistent (at least six months).

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

CFIDS Association calls for expert input for DSM-5 submission

The US CFIDS Association calls for expert input for DSM-5 submission

Post #23 Shortlink: http://wp.me/pKrrB-Cl  

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 “Complex 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.”

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:

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”:

     Disorder Descriptions PDF: APA Somatic Symptom Disorders description January 29 2010

     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

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