The Trouble with Timelines: DSM-5 round up

The Trouble with Timelines: DSM-5 round up

Post #136 Shortlink: http://wp.me/pKrrB-1LJ

In a November 9, 2011 interview with Deborah Brauser for Medscape Medical News, Darrel Regier, MD, APA Director of Research and Task Force Vice-chair, uttered some chilling statements.

According to Dr Regier:

“Our plan is that these [judgements] will be immediately tested once the DSM is official, and then one will be able to see if revisions can be made…

“Our workgroups are struggling with this balance…for what might be the most appropriate fix. Some of these fixes are not as well studied as others and we recognize that. But we can’t move forward without some of these put into practice. So we think this is a much more testable set of scientific hypotheses…”

“And that’s what the DSM is — a set of scientific hypotheses that are intended to be tested and disproved if the evidence isn’t found to support them…”

“We’re thinking of having a DSM-5.1, DSM-5.2, etc, in much the same way is done with software updates…”

So come May 2013, does APA plan to publish an unvalidated beta as though it were the next release of Firefox, test out its pet theories then release post publication “patches” to fix the flaws?

 

First up, Allen Frances blogging, today, on Psychology Today:

Allen Frances, MD, who chaired the Task Force that had oversight of the development of DSM-IV, is a former chief of psychiatry at Duke University Medical Center and currently professor emeritus at Duke

DSM5 in Distress
The DSM’s impact on mental health practice and research.
by Allen Frances, M.D.

APA Should Delay Publication Of DSM 5 until it can achieve adequate reliability and quality

Allen Frances, MD | January 31, 2012

“…With less than a year remaining before DSM 5 is scheduled to go to print, the signs are clear that it cannot possibly be completed on time unless we are willing to settle for a third rate product. The unmistakable red flag is the recent embarrassing admission that DSM 5 will accept diagnoses that achieve reliabilities as unbelievably low as 0.2-0.4 (barely beating the level of chance agreement two monkeys could achieve throwing darts at a diagnostic board). This dramatic departure from the much higher standards of previous DSM’s is a sure tip-off that many DSM 5 proposals must be failing to achieve adequate diagnostic agreement in the much delayed and yet to be reported field trials. Unable to meet expected standards, the DSM 5 Task Force is drastically and desperately trying to lower our expectations…”

“…The wise, safe, and responsible thing for APA to do now is to delay publication of DSM 5 until the missing second stage of rewriting and retesting can be completed. The wordings that do poorly in the first stage of field testing should be rewritten to finally attain the clarity and consistency necessary in an official manual of psychiatric diagnosis. The newly revised (and hopefully final) versions should then undergo the second stage of field testing as originally envisaged to ensure that they now work…”

“…Will APA do what is needed to protect us from a poor quality DSM 5 and instead provide us with one that is safe and scientifically sound? It seems unlikely. The DSM 5 publishing profits that are essential to APA budget projections require there be a May 2013 debut of the manual in bookstores, come hell or high water. So instead of getting DSM 5 up to minimal standards of quality, DSM 5 is trying to drop the standards to minimal – 0.2-0.4 will have to do.

“What about the DSM 5 claim that its field trials so rigorous that we should entertain only the lowest possible expectations of them? This is nonsense. The DSM 5 field trials were in fact conducted under very privileged circumstances that would guarantee much higher levels of reliability than could ever be achieved in everyday clinical practice: 1) Testing was performed in academic centers with a homogeneous corps of well trained raters interested in psychiatric diagnosis and trying their best because judgments were being observed; 2) Raters had access to the results of a computerized self report instrument, thus reducing information variance; 3) Each site specialized in a limited number of target diagnoses that were known to the raters who would therefore be on the watch for them; 4) The unrealistically high prevalences of target disorders in the sites made agreement much easier than the more needle-in-haystack situation of routine practice; 5) Academic settings attract a selected group of the more severely ill patients who are easier to diagnose reliably; and 6) The time allotted for diagnostic interviews exceeded what is typical in clinical practice…”

“…The May 2013 publication date appears to be completely unrealistic unless we are to settle for a DSM 5 so poorly done that its reliabilities will return us to the dark ages of DSM II. DSM 5 is in a very deep hole with very few remaining options.

“My recommendations: 1) Make the publication date flexible and contingent on delivery of a quality product that the field can trust; 2) Subject the current drafts and texts to extensive editing for clarity and consistency; 3) Drop the controversial suggestions that risk harmful unintended consequences or at least subject them to external scientific review; 4) Have the rewritten drafts reviewed word for word by many experts in the clinical, research, and forensic uses of DSM 5; and 5) Field test again to make sure the new versions work adequately…”

Full commentary here on DSM5 in Distress

 

On Monday, William E. Narrow, MD, in a Q & A for Pittsburgh Post Gazette:

William E. Narrow, M.D., M.P.H., is Associate Director, Division of Research, Research Director, DSM-5 Task Force for American Psychiatric Association

Q&A with Dr. William Narrow, research director for the DSM 5 Task Force

William Narrow | January 30, 2012

The Pittsburgh Post-Gazette asked the American Psychiatric Association to comment on the DSM 5:

Q: Do you think the final form of the DSM-V will differ substantially from the current draft version?

A: There is currently no draft version of DSM-5. The information on the DSM-5 Web site consists of proposed DSM-5 diagnostic criteria and assessment instruments, along with rationales for all changes that have been proposed. The first draft version of the DSM-5, which also includes explanatory text for each disorder and introductory chapters, is currently being developed. We anticipate that many of the proposed changes will be officially adopted. Most notable among these is the proposed change in chapter organization to better reflected a developmental, lifespan approach as well as purported neuroscientific and genetic linkages between diagnostic categories (e.g., placement of the psychosis chapter alongside the bipolar disorders chapter, then followed by the mood disorders chapter). We also anticipate that the proposed inclusion of dimensional assessments will be accepted for DSM-5, although these too were field tested and results are currently being examined. Proposed changes that are considered minimal (e.g., minor changes in wording or criteria) that did not require field testing and, at this point, appear to be sufficiently supported by findings from the literature have a high likelihood of being adopted.

Read the rest of Dr Narrow’s responses here

 

From January 6, John M. Oldham, M.D., President, American Psychiatric Association comments on the APA’s December Board of Trustees meeting, in Psychiatric News:

Psychiatric News | January 06, 2012
Volume 47 Number 1 page 4-6
© American Psychiatric Association

From the President

Your Board’s Agenda Focuses on the Future

John M. Oldham, M.D.

At the  foot of Dr Oldham’s Board meeting commentary you will find a link for a collection of PDF files of meeting materials available to download as a “Board packet”. (This bundle of PDFs may take a while to load.)

See file 11 Item 11.A – DSM Task Force Report.pdf   Retrieved: 01.31.12

Item: 11.A
Board of Trustees
December 2011

DSM-5 TASK FORCE AND WORK GROUP UPDATE

APA Division of Research Report to the APA Board of Trustees
Submitted by: David J. Kupfer, M.D. and Darrel A. Regier, M.D., M.P.H.

———–

This report contains:

An overview of DSM-5 text development activities;
Current progress and timeline for the DSM field trials;
Scientific Oversight Committee’s (SOC) current progress and timeline for DSM field trials;
Scientific Oversight Committee’s progress in reviewing proposed DSM-5 disorders;
Overview of a Clinical and Public Health (CPH) review process that is to take place in conjunction with the Scientific Oversight Committee’s review;
Plans for the remainder of 2011 and for 2012.

Under Plans for 2012 it reports:

That the primary focus for 2012 will be on completion of initial draft text for all proposed DSM-5 disorders and data analysis of information gathered from the Large Academic Site and the Routine Clinical Practice (RCP) Field Trials.

That all of the text will receive editorial review throughout December and January.

That a penultimate draft of DSM-5 will be presented to the DSM-5 Task Force for their recommendations by February 1, though portions, it says, will be provided beginning in December, as these become available.

That the SOC and CPH will continue to conduct reviews through Spring of 2012.

That DSM criteria and text will continue to undergo changes based on reviews and recommendations of these various parties as well on comments received from a third public posting of the DSM-5 criteria on the DSM5.org web site, slated for May, 2012.

That the final draft of DSM-5 will be submitted to the APA Assembly and to the Board of Trustees in Fall of 2012 and submitted to APPI press for publication by December 31.

This report provides further confirmation that in December, it was anticipated that the third and final public review of proposals for changes to DSM-IV categories and criteria would be held in May, this year. (Note that the DSM-5 Development website Timeline was updated a few days ago but gives, only vaguely, ”Spring”, as the date for a two month public review and comment period).

 

On January 29, Gary Greenberg, author of Inside the Battle to Define Mental Illness, Wired, December 2010, for NYT Op-Ed:

Op-Ed Contributor

Not Diseases, but Categories of Suffering

Gary Greenberg | January 29, 2012

“…On the other hand, given that the current edition of the D.S.M. has earned the association — which holds and tightly guards its naming rights to our pain — more than $100 million, we might want to temper our sympathy. It may not be dancing at the ball, but once every mental health worker, psychology student and forensic lawyer in the country buys the new book, it will be laughing all the way to the bank…”

The Autism Society and Autistic Self Advocacy Network have put out a joint statement on DSM-5:

“The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5.”

The joint statement by the Autistic Self Advocacy Network and the Autism Society of America on the DSM-5 can be read here

 

Benjamin Nugent, Op-Ed piece, NYT:

New York Times

Op-Ed Contributor

I Had Asperger Syndrome. Briefly.

Benjamin Nugent | January 31, 2012

FOR a brief, heady period in the history of autism spectrum diagnosis, in the late ’90s, I had Asperger syndrome…”

American Psychiatric Association rejects call for independent review of DSM-5 proposals

American Psychiatric Association rejects psychologists’ call for independent review of controversial DSM-5 proposals

Post #135 Shortlink: http://wp.me/pKrrB-1KF

On January 9, 2012, the Coalition for DSM-5 Reform, an ad hoc committee of the Society for Humanistic Psychology (Division 32 of the American Psychological Association), sent another call to the American Psychiatric Association’s Board of Trustees and DSM-5 Task Force to submit controversial proposals for DSM-5 to independent scrutiny.

American Psychiatric Association president, John Oldham, M.D., issued a response last Friday, January 27.

“…There is in fact no outside organization that has the capacity to replicate the range of expertise that DSM-5 has assembled over the past decade to review diagnostic criteria for mental disorders. In addition, the posting of the criteria on the www.dsm5.org Web site for an international review; the ongoing consultation and coordination with the WHO Mental Disorder Advisory Group for ICD-11; and the several internal reviews provided by the Scientific Review Committee, a Clinical and Public Health Committee review, and the Task Force as a whole, collectively provide the most far reaching review ever undertaken for any DSM revision…“   

                        John Oldham M.D. President, on behalf of American Psychiatric Association

For a copy of the Coalition’s letter see Post #126: Psychologists call for independent review of DSM-5    

Full response from John Oldham, M.D., on behalf of the American Psychiatric Association, here:

      APA Response on 01.27.12 to Coalition for DSM-5 Reform letter of 01.09.12

 

Text

American Psychiatric Association

1000 Wilson Boulevard
Suite 1825
Arlington, VA 22209
Telephone 703.907.7300
Fax 703.907.1085
Email apa@psych.org
Internet www.psych.org

David N. Elkins, Ph.D.
President
Society for Humanistic Psychology
750 First Street, N.E.
Washington, DC 20002Ͳ4242

January 27, 2012

Dear President Elkins:

We appreciate the January 9, 2012, open letter from you and the members of the Division 32 Open Letter Committee to the American Psychiatric Association and developers of DSM-5 regarding the need for a more thorough external review process in revising the manual.

We echo your desire to ensure that “the proposed DSM-5 is safe and credible.” To that end, the DSM-5 Task Force and Work Groups have been purposefully assembled to include clinicians and researchers with diverse backgrounds and expertise, representing nearly 100 different academic and medical institutions from around the world. Our November 21, 2011, letter to the American Counseling Association provides a more complete listing of the steps we have taken to obtain an independent review of the DSM-5 proposals.

(This can be viewed at: http://dxrevisionwatch.files.wordpress.com/2011/11/apa_letter_to_aca_11-21-11.pdf)

[Ed: URL provided in Dr Oldham's letter returns 404, substituting file from Dx Revision Watch.]

There is in fact no outside organization that has the capacity to replicate the range of expertise that DSM-5 has assembled over the past decade to review diagnostic criteria for mental disorders. In addition, the posting of the criteria on the www.dsm5.org

Web site for an international review; the ongoing consultation and coordination with the WHO Mental Disorder Advisory Group for ICD-11; and the several internal reviews provided by the Scientific Review Committee, a Clinical and Public Health Committee review, and the Task Force as a whole, collectively provide the most far-reaching review ever undertaken for any DSM revision. However, we recognize that there will not be universal agreement with all of the final decisions made in response to these reviews. As with all scientific classifications applied to clinical practice, research will continue to refine our understanding of these disorders, and revisions to the DSM-5 as a living document will be made after publication of DSM-5 in 2013.

Since there is no “gold standard” for defining mental disorders and many other medical disorders without pathognomonic biological markers, each revision of diagnostic criteria has been seen as the best current set of diagnostic criteria that are meant to be used in clinical practice and tested for their validity. Validity criteria first published by Robins and Guze in 1970 for the Feighner criteria have formed the basic framework for testing the Research Diagnostic Criteria, DSM-III, DSM-III-R, DSM-IV, and the ICD-10. The work groups and the review groups have closely attended to these and an expanded set of validity criteria that are contained in the Guidelines for Making Changes to DSM on the http://www.dsm5.org website: (http://www.dsm5.org/ProgressReports/Documents/Guidelines-for-Making-Changes-to-DSM_1.pdf).

The work groups are accessing more than 30 years of research since the DSM-III was first published in making their recommendations. Some of the proposed changes, such as the inclusion of more dimensional components, have been recommended by members of previous Task Forces and by many participants in the National Institutes of Health-sponsored conference series leading up to the Task Force. We will also have empirical data from our field trials on how these and other proposed changes are working. Final decisions about the revisions will only be made after all of these reviews are completed.

We hope that this additional information is responsive to your members, colleagues, and individuals who use mental health services to clarify that we are undertaking an exceptionally extensive review process involving an international and multidisciplinary clinical and scientific group of experts.

As we continue to refine the proposals for DSM-5 and further progress to development of DSM-5.1 and beyond, we look forward to maintaining an open and ongoing dialogue with your organization, colleagues, and the mental health field at large.

Sincerely,

John M. Oldham, M.D.
President

 

Resources

Coalition for DSM-5 Reform on Dx

Open Letter and iPetition

Coalition for DSM-5 Reform on Twitter    @dsm5reform

Coalition for DSM-5 Reform on Facebook

Coalition for DSM-5 Reform website

This initiative is also being covered on

The Society for Humanistic Psychology Blog

The Society for Humanistic Psychology on Twitter    @HumanisticPsych

The Society for Humanistic Psychology on Facebook

Timeline revised but no firm date for DSM-5 third and final stakeholder review and comment period

Timeline revised but still no firm date for the DSM-5 third and final stakeholder review and comment period

Post #134 Shortlink: http://wp.me/pKrrB-1JL

According to yesterday’s report from Deborah Brauser for Medscape Medical News (Concern Over Changes to Autism Criteria Unfounded, Says APA, January 25, 2012), the portion of the DSM-5 field trials conducted at academic centers concluded at the end of October.

The routine clinical settings field trials, scheduled to complete by December but extended in order that more participants might be recruited (DSM-5 Disorganization, Disarray, and Delays, Dr Dayle Jones, American Counseling Association, January 3, 2012), are now expected to complete in March, this year.

In November, DSM-5 Task Force Vice-chair, Darrel Regier, MD, predicted the pushing back of the final public feedback period from January–February, to “no later than May 2012″ (APA Answers DSM-5 Critics, Deborah Brauser, November 9, 2011), in response to timeline slippage.

I noticed, today, that the Timeline on the DSM-5 Development site has finally been updated to reflect a “Spring” posting of draft diagnostic criteria, for a two month long stakeholder review and comment period.

No dates appear to being publicly released, at this point, for this third and final public review.

The lack of advance dates presents barriers to public and professional participation.

Patient advocacy organizations need to alert their constituencies and their professional advisers whose opinions will inform consumer group submissions. Professional organizations and bodies who submit feedback in consultation with their memberships will also need to plan the sending out of timely alerts via newsletters and membership publications.

The second release of draft proposals was posted on May 4, last year, with no prior announcement or news release by APA and left many organizations and advocates, including myself, unprepared.

It is hoped that APA will give reasonable notice before releasing this third and final draft – though how much influence professional and public feedback might have at this late stage in the DSM-5 development process is moot.

Full revised Timeline here

DSM-5 media round up: Grief, autism spectrum disorder, Paraphilias Sub workgroup, medical ethics

DSM-5 media round up: Grief, autism spectrum disorder, Paraphilias Sub workgroup, medical ethics

Post #133 Shortlink: http://wp.me/pKrrB-1J8

The Coffee Klatch

Allen Frances talked to The Coffee Klatch Parents strand on January 25, 2012
 
Audio
 
Dr Allen Frances Chair of the DSM-IV Task Force returns to discuss the confusion and concerns over the soon to be released DSMV.  How will the changes impact your child?  What do the changes mean for your childs accommodations? Why are so many additions and revisions causing so much controversy?  

New York Times

When does a broken heart become a diagnosis?

Grief Could Join List of Disorders

Benedict Carey | January 24, 2012

In a bitter skirmish over the definition of depression, a new report contends that a proposed change to the diagnosis would characterize grieving as a disorder and greatly increase the number of people treated for it.

The criteria for depression are being reviewed by the American Psychiatric Association, which is finishing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, or D.S.M., the first since 1994. The manual is the standard reference for the field, shaping treatment and insurance decisions, and its revisions will affect the lives of millions of people for years to come.

In coming months, as the manual is finalized, outside experts will intensify scrutiny of its finer points, many of which are deeply contentious in the field. A controversy erupted last week over the proposed tightening of the definition of autism, possibly sharply reducing the number of people who receive the diagnosis. Psychiatrists say current efforts to revise the manual are shaping up as the most contentious ever…

Full article

Psychiatric News

APA Responds to N.Y. Times Article on Proposed DSM Change

Psychiatric News Alert | January 25, 2012

…The proposed elimination of the bereavement exclusion—which like all proposals for DSM-5 is still being reviewed—is the subject of an article in the New York Times today citing researchers at Columbia who claim that removing the exclusion would medicalize normal grief.

But Jan Fawcett, M.D., chair of the work group, told Psychiatric News that people who develop the symptoms and the level of impairment associated with major depression should have access to treatment. And he wondered: Is there any difference between depression that occurs in response to grief and that which occurs in response to any other life stress? “Where do you draw the line?” he asked…

Full article

Bloomberg News

Psychiatric Group Push to Redefine Mental Illness Sparks Revolt

Elizabeth Lopatto | January 24, 2012

An effort that promises to broaden the definitions of mental illnesses is spurring a revolt among health-care professionals in the U.S. and the U.K…

…The October letter and the June criticism by the British Psychological Association, have a spirited exchange that resulted this month in the critics calling for an independent scientific review of the more controversial diagnosis changes.

“It really isn’t possible to identify what kind of outside group would have the expertise and range of discipline and disorders we’re covering to do that kind of outside review,” Regier said by telephone. Still, he said the panel members are interested in the criticisms of their proposals and “we’re not taking them lightly.”

Full article here

Response from Allen Frances, MD

DSM5 in Distress

The DSM’s impact on mental health practice and research.

Defenses From DSM 5 Get ‘Curiouser and Curiouser’
Trying to defend the indefensible

Allen Frances, MD | January 24, 2012

Elizabeth Lopatto has written an excellent piece in today’s Bloomberg News summarizing concerns that DSM 5 will expand the boundaries of psychiatry, increase the already existing diagnostic inflation, and promote the excessive use of medications to treat life problems that don’t really require them.

The Vice Chair of the DSM 5 Task Force tries to defend DSM 5 but with statements that have a strange Alice-in-Wonderland out-of-touch-with-reality quality…

Full article

Allen Frances on Huffington Post

Don’t Confuse Grief with Depression | January 27, 2012

The Autism Controversy Revisited | January 22, 2012

Why Are Kids Suddenly So Sick? | January 20, 2012

Preventive Psychiatry Can Be Bad for Our Health | January 19, 2012

America Is Over Diagnosed and Over Medicated | January 09, 2012

Lifespan News

The Impact Of Deleting Five Personality Disorders In The New DSM-5

January 24, 2012

“When it comes to revising the official diagnostic classification system, the guiding principle should be that criteria should not be changed in the absence of research demonstrating that the new approach is superior to the old in either validity or clinical utility, preferably both,” Zimmerman states. “Despite assurances that only data-driven modification would be made, with each new edition of the DSM, we have witnessed repeated instances of changes being made in the absence of sufficient data demonstrating the new criteria is superior…”

…Zimmerman comments, “The findings of the present study highlight our concerns about adopting changes in the diagnostic manual without adequate empirical evaluation beforehand. To be sure, there are problems with the classification of personality disorders, however, the identification of a problem is only the first step of a process resulting in a change to diagnostic criteria.”

He concludes, “The classification of personality disorders would not be improved if the new criteria or diagnostic material were more clinically useful but less reliable and valid.”

Full article

Sexual Abuse: A Journal of Research and Treatment

A Guest Blog by DSM-5 Paraphilias Subworkgroup Chair Dr. Ray Blanchard on Proposed Criteria for Pedophilic Disorder

Ray Blanchard PhD | January, 24 2012

NOTE: This guest blog comes to you authored by Ray Blanchard, Ph.D., who is an Adjunct Professor, Department of Psychiatry, University of Toronto and an Affiliate Scientist, Centre for Addiction and Mental Health, Toronto, Ontario, Canada. He is also the Chair of the Paraphilias Subworkgroup for the DSM-5 Work Group on Sexual and Gender Identity Disorders and was the 2010 recipient of ATSA’s Significant Achievement Award.

The Proposal to Add Intense or Preferential Sexual Interest in Early Pubescent Children to the DSM-5 Diagnosis of Pedophilic Disorder

Ray Blanchard, Ph.D.

The proposal of the DSM-5 Work Group on Sexual and Gender Identity Disorders to extend the definition of Pedophilic Disorder to include preferential attraction to children in the early stages of puberty has prompted an extraordinarily vigorous and often misleading rhetorical campaign by its opponents. Although debate on this topic may be healthy, deliberate distortion and disinformation are not. I am therefore writing this piece to give an accurate account of the Work Group’s reasons for this proposal. All of the arguments in it have previously been made in conference presentations, in print documents (usually authored by members of the Paraphilias Subworkgroup of the Work Group on Sexual and Gender Identity Disorders), and in on-line sources (http://www.dsm5.org/). This piece simply puts these arguments together in one convenient and readily accessible place.

Full article

 

DSM-5 proposals and autism spectrum disorder (ASD)

A good deal published over the last week around DSM-5 proposals and autism spectrum disorder (ASD) which can be pulled up via Google News. Selected items:

American Psychiatric Association put out this News Release (Release No. 12.03) on January 20, 2012:

DSM-5 Proposed Criteria for Autism Spectrum Disorder Designed to Provide More Accurate Diagnosis and Treatment

ARLINGTON, Va. (Jan. 20, 2012)—The American Psychiatric Association (APA) has proposed new diagnostic criteria for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) for autism. While final decisions are still months away, the recommendations reflect the work of dozens of the nation’s top scientific and research minds and are supported by more than a decade of intensive study and analysis. The proposal by the DSM-5 Neurodevelopmental Work Group recommends a new category called autism spectrum disorder which would incorporate several previously separate diagnoses, including autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified.

The proposal asserts that symptoms of these four disorders represent a continuum from mild to severe, rather than a simple yes or no diagnosis to a specific disorder. The proposed diagnostic criteria for autism spectrum disorder specify a range of severity as well as describe the individual’s overall developmental status–in social communication and other relevant cognitive and motor behaviors.

Dr. James Scully, Medical Director of the American Psychiatric Association said, “The proposed criteria will lead to more accurate diagnosis and will help physicians and therapists design better treatment interventions for children who suffer from autism spectrum disorder.”

The draft DSM-5 criteria will provide a more useful dimensional assessment to improve the sensitivity and specificity of the criteria. This change will help clinicians more accurately diagnose people with relevant symptoms and behaviors by recognizing the differences from person to person, rather than providing general labels that tend not to be consistently applied across different clinics and centers.

Proposed DSM-5 criteria are being tested in real-life clinical settings known as field trials. Field testing of the proposed criteria for autism spectrum disorder does not indicate that there will be any change in the number of patients receiving care for autism spectrum disorders in treatment centers–just more accurate diagnoses that can lead to more focused treatment.

Criteria proposed for DSM-5 are posted on the DSM-5 website and will be open for additional public comment this spring. More information on the process for developing DSM-5 is also available on the website. Final publication of DSM-5 is planned for May 2013.

DSM is the manual used by clinicians and researchers to diagnose and classify mental disorders. The American Psychiatric Association (APA) will publish DSM-5 in 2013, culminating a 14-year revision process. For more information, go to www.dsm5.org .

The American Psychiatric Association is a national medical specialty society whose physician members specialize in the diagnosis, treatment, prevention, and research of mental illnesses including substance use disorders. Visit the APA  at www.psych.orgwww.psychiatryonline.org, and www.HealthyMinds.org.

and published this Alert on Psychiatric News website:

Autism Spectrum Disorder Proposed for DSM-5 Would Cover Those With Asperger’s

January 20, 2012

After much study, the DSM-5 Neurodevelopemental Disorders Work Group has concluded that there is no evidence to support continued separation of autism spectrum disorder (ASD) diagnoses, Susan Swedo, M.D., the work group chair, told Psychiatric News. “That is why we’ll be recommending that DSM-5 utilize a single diagnosis—ASD.”

The move to a single diagnosis of autism spectrum disorder would eliminate Asperger’s disorder and pervasive developmental disorder-not otherwise specified as separate diagnoses. They are included in DSM-IV. The possible elimination of Asperger’s has proven controversial, as evidenced by an article in the New York Times yesterday suggesting that the proposed change would narrow the definition and exclude people in need of a diagnosis and treatment. But in fact, adults or children diagnosed with Asperger’s according to DSM-IV criteria would meet criteria for autism spectrum disorder, with “specifiers” that help clinicians identify patients who have individual differences…

Full News Alert

New York Times

From Benedict Carey for NYT:

New Definition of Autism Will Exclude Many, Study Suggests

Benedict Carey | January 19, 2012

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.

The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply…

Amy Harmon contributed reporting.

Full article

From Amy Harmon for NYT:

A Specialists’ Debate on Autism Has Many Worried Observers

Amy Harmon | January 20, 2012

Full article

A debate among medical professionals over how to define autism has spilled over into the public domain, stirring anger and fear among many parents and advocates of those with the neurological disorder, even as some argue that the diagnosis has been too loosely applied.

A study reported on Thursday found that proposed revisions to the American Psychiatric Association’s definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. These are people who have difficulties with social interaction but do not share the most severe impairments of children with classic autism.

From Deborah Brauser for Medscape Medical News

From Medscape Medical News > Psychiatry

Concern Over Changes to Autism Criteria Unfounded, Says APA

Deborah Brauser | January 25, 2012

January 25, 2012 — Concerns that proposed changes to autism criteria in the upcoming Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) will exclude many individuals from diagnosis and treatment are unfounded, says the American Psychiatric Association (APA)…

Full article

Dr. William Narrow Gives Update on DSM-5

William Narrow, M.D., provides an update on the progress of DSM-5.

3:02 mins | Uploaded January 17, 2012

Dr William Narrow is DSM-5 Research Director

Virtual Mentor

American Medical Association Journal of Ethics

December 2011, Volume 13, Number 12: 873-879.

STATE OF THE ART AND SCIENCE

Patient-Centered Revisions to the DSM-5

Emily A. Kuhl, PhD, David J. Kupfer, MD, and Darrel A. Regier, MD, MPH

The forthcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5 [1]) will mark the first time in nearly 2 decades that the field has overhauled the way mental illnesses are diagnosed and classified. Anticipation of the DSM-5 has been high, and recent discussions about changes likely to be adopted have focused largely on the manual’s increased integration of scientific and clinical evidence in support of proposed revisions [2, 3]. An equally important, though perhaps less frequently heard, voice in this dialogue concerns the potential ethical consequences of the DSM-5’s draft revisions.

The therapeutic alliance between psychiatrist and patient is unique and requires constant vigilance on ethical matters of self-harm or harm to others, confidentiality, legal aspects of diagnosis and treatment (e.g., competency), patient autonomy, involvement of third parties, dual agency and dual relationships, and patient stigma. This last issue is of particular concern; perhaps more so than in any other area of medicine, stigma has become a routine aspect of the lived experience for many people with mental illnesses.

PDF or Open here on Dx Revision Watch Patient-Centred Revisions to the DSM-5

DSM 5 and Diagnostic Inflation: Reply To Misleading Comments From Task Force: Allen Frances

Post #132 Shortlink: http://wp.me/pKrrB-1IP

Allen Frances, MD, who chaired the Task Force that had oversight of the development of DSM-IV, is currently professor emeritus, Duke University.

DSM5 in Distress
The DSM’s impact on mental health practice and research.
by Allen Frances, M.D.

DSM 5 and Diagnostic Inflation
Reply To Misleading Comments From The Task Force

Allen Frances, MD | January 23, 2012

My biggest concern regarding DSM-5 is that it will dramatically increase the rates of mental disorder by cheapening the currency of psychiatric diagnosis—arbitrarily and carelessly reducing thresholds for existing disorders and introducing new disorders with high prevalence. This would create millions of newly mislabeled “patients,” resulting in unnecessary and potentially harmful treatment, stigma, and wasteful misallocation of scarce resources…

Read on

also at

Psychiatric Times

DSM-5 and Diagnostic Inflation: Reply to the DSM-5 Task Force
Allen Frances, MD | January 23, 2012

Free registration required to access Psychiatric Times article.

Preventive Psychiatry Can Be Bad for Our Health: Allen Frances on Huffington Post #2

Preventive Psychiatry Can Be Bad for Our Health: Allen Frances on Huffington Post #2

Post #131 Shortlink: http://wp.me/pKrrB-1I2

Allen Frances, MD, who chaired the Task Force that had oversight of the development of DSM-IV, publishes the second in a series of Huffington Post blogs on his concerns for the forthcoming DSM-5.

Huffington Post

Preventive Psychiatry Can Be Bad for Our Health

Allen Frances | January 19, 2012
Professor Emeritus, Duke University

Preventive psychiatry may someday be of significant service in reducing the burden of human suffering – but only if it can be done really well. And the sad truth is that we don’t yet have the necessary tools. More people will be harmed than helped if psychiatry stretches itself prematurely to do what is currently well beyond its reach. That’s what is so scary about the unrealistic prevention ambitions of DSM-5, the new manual of mental disorders now in preparation and set to become official in 2013. DSM-5 proposes a radical redefinition of the boundaries of psychiatry, giving it the impossible role of identifying and treating mental disorders in their nascent stages before they have fully declared themselves. Tens of millions of people now deemed normal would suddenly be relabeled mentally disordered and subjected to stigma and considerable risks consequent to inappropriate treatment…

Read on

 

Related content:

CDC study quoted in Huffington Post blog #2:

Antidepressant use in persons aged 12 and over: United States, 2005–2008. Pratt LA, Brody DJ, Gu Q, NCHS data brief, no 76. Hyattsville, MD: National Center for Health Statistics. 2011  PDF

America Is Over Diagnosed and Over Medicated: Allen Frances on Huffington Post
Allen Frances, Huffington Post #1, January 09, 2012

Government survey finds that 5 percent of Americans suffer from a ‘serious mental illness’
David Brown, Washington Post, January 19, 2012

SAMHSA News Release
Date: 1/19/2012 12:05 AM
Media Contact: SAMHSA Press Office
Telephone: 240-276-2130

National report finds one-in-five Americans experienced mental illness in the past year
Substance dependence and abuse rates higher among those experiencing mental illness

A new national report reveals that 45.9 million American adults aged 18 or older, or 20 percent of this age group, experienced mental illness in the past year. The rate of mental illness was more than twice as high among those aged 18 to 25 (29.9 percent) than among those aged 50 and older (14.3 percent). Adult women were also more likely than men to have experienced mental illness in the past year (23 percent versus 16.8 percent).

Mental illness among adults aged 18 or older is defined as having had a diagnosable mental, behavioral, or emotional disorder (excluding developmental and substance use disorders) in the past year, based on criteria specified in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; American Psychiatric Association [APA], 1994).

The Substance Abuse and Mental Health Services Administration’s (SAMHSA) National Survey on Drug Use and Health also shows that 11.4 million adults (5 percent of the adult population) suffered from serious mental illness in the past year. Serious mental illness is defined as one that resulted in serious functional impairment, which substantially interfered with or limited one or more major life activities.

SAMHSA through its strategic initiative on substance abuse and mental illness prevention and recovery is working to assist states, territories, tribal governments, and communities to adopt evidence-based practices; deliver health education related to prevention; and establish effective policies, programs, and infrastructure to help address these problems. Throughout the nation new programs are underway to strengthen the capacity of communities to better service the needs of those suffering from mental illness.

“Mental illnesses can be managed successfully, and people do recover,” said SAMHSA Administrator Pamela S. Hyde. “Mental illness is not an isolated public health problem. Cardiovascular disease, diabetes, and obesity often co-exist with mental illness and treatment of the mental illness can reduce the effects of these disorders. The Obama Administration is working to promote the use of mental health services through health reform. People, families and communities will benefit from increased access to mental health services.”

The economic impact of mental illness in the United States is considerable—about $300 billion in 2002. According to the World Health Organization, mental illness accounts for more disability in developed countries than any other group of illnesses, including cancer and heart disease.

In terms of treatment statistics, the report indicates that about 4 in 10 people experiencing any mental illness in the past year (39.2 percent) received mental health services during that period. Among those experiencing serious mental illness the rate of treatment was notably higher (60.8 percent).

The report also noted that an estimated 8.7 million American adults had serious thoughts of suicide in the past year – among them 2.5 million made suicide plans and 1.1 million attempted suicide. Those in crisis or knowing someone they believe may be at immediate risk of attempting suicide are urged to call the National Suicide Prevention Lifeline 1-800-273-TALK (8255) or http://www.suicidepreventionlifeline.org . This suicide prevention hotline network funded by SAMHSA provides immediate free and confidential crisis round-the-clock counseling to anyone in need throughout the country, everyday of the year.

According to the report, rates for substance dependence were far higher for those who had experienced either any mental illness or serious mental illness than for the adult population which had not experienced mental illness in the past year. Adults experiencing any mental illness in the past year were more than three times as likely to have met the criteria for substance dependence or abuse in that period than those who had not experienced mental illness in the past year (20 percent versus 6.1 percent). Those who had experienced serious mental illness in the past year had even a higher rate of substance dependence or abuse (25.2 percent). “These data underscore the importance of substance abuse treatment as well,” said SAMHSA Administrator Pamela S. Hyde.

“Mental illness is a significant public health problem in itself, but also because it is associated with chronic medical diseases such as cardiovascular disease, diabetes, obesity, and cancer, as well as several risk behaviors including physical inactivity, smoking, excessive drinking, and insufficient sleep,” said Ileana Arias, Ph.D., Principal Deputy Director of CDC. “Today’s report issued by SAMHSA provides further evidence that we need to continue efforts to monitor levels of mental illness in the United States in order to effectively prevent this important public health problem and its negative impact on total health.”

The report also has important findings regarding mental health issues among those aged 12 to 17. According to the report 1.9 million youth aged 12 to 17 (8 percent of this population) had experienced a major depressive episode in the past year. A major depressive episode is defined as a period of at least 2 weeks when a person experienced a depressed mood or loss of interest or pleasure in daily activities and had at least four of seven additional symptoms reflecting the criteria as described in the 4th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; American Psychiatric Association [APA], 1994).

In addition, the report finds that young people aged 12 to 17 who experienced a major depressive episode in the past year have more than twice the rate of past year illicit drug use (37.2 percent) as their counterparts who had not experienced a major depressive episode during that period (17.8 percent).

The complete survey findings from this report are available on the SAMHSA Web site at http://www.samhsa.gov/data/NSDUH/2k10MH_Findings/

The 2010 National Survey on Drug Use and Health is a scientifically conducted annual survey of approximately 67,500 people throughout the country, aged 12 and older. Because of its statistical power, it is the nation’s premier source of statistical information on the scope and nature of many behavioral health issues affecting the nation.

For more information about SAMHSA visit: http://www.samhsa.gov

SAMHSA is a public health agency within the Department of Health and Human Services. Its mission is to reduce the impact of substance abuse and mental illness on America’s communities.

Last updated: 1/18/2012 2:53 PM

Two commentaries from Allen Frances in response to APA field trial documents

Two commentaries from Allen Frances in response to APA field trial documents

Shortlink Post #130: http://wp.me/pKrrB-1GX

Allen Frances, MD, chaired the DSM-IV Task Force and a former chair of the Department of Psychiatry at Duke University School of Medicine, Durham, NC. He is currently professor emeritus at Duke.

 

References and resources

DSM-5 document: Q & A on DSM-5 Prevalence and Reliability January 12, 2012

DSM-5 document: Reliability and Prevalence in the DSM-5 Field Trials January 12, 2012

based on the The American Journal of Psychiatry article DSM-5: How Reliable Is Reliable Enough? Helena Chmura Kraemer, Ph.D.; David J. Kupfer, M.D.; Diana E. Clarke, Ph.D.; William E. Narrow, M.D., M.P.H.; Darrel A. Regier, M.D., M.P.H. January 01, 2012, Vol. 169. No. 1

DSM-5 Field Trials page

Consumer-Friendly Frequently Asked Questions about DSM-5 Field Trials
Frequently Asked Questions about DSM-5 Field Trials in Large, Academic Settings
DSM-5 Field Trial Protocol for Large, Academic Settings
DSM-5 Field Trial Protocol for Routine Clinical Practice Settings
APA’s Request for Proposals for Potential Field Trial Sites

DSM-5 Field Trials in Routine Clinical Practice Settings
Supplemental Material for Clinician Application to Own Institutional Review Board (IRB)

Inside DSM-5 Field Trials, Flyer, American Psychiatric Association Practice Research Network, December 2011

Commentary: DSM-5 Disorganization, Disarray, and Delays, Dr Dayle Jones, PhD, January 3, 2012

 

Two commentaries from Allen Frances, MD

Two Fallacies Invalidate the DSM-5 Field Trials
APA telegraphs that DSM 5 will be unreliable.

Allen Frances, MD | January 16, 2012

The designer of the DSM-5 Field Trials has just written a telling commentary in the American Journal of Psychiatry. She makes two very basic errors that reveal the fundamental worthlessness of these field trials and their inability to provide any information that will be useful for DSM-5 decision making.

1) The commentary states: “A realistic goal is a kappa between 0.4 and 0.6, while a kappa between 0.2 and 0.4 would be acceptable.” This is simply incorrect and flies in the face of all traditional standards of what is considered ‘acceptable’ diagnostic agreement among clinicians. Clearly, the commentary is attempting to greatly lower our expectations about the levels of reliability that were achieved in the field trials – to soften us up to the likely bad news that the DSM-5 proposals are unreliable. Unable to clear the historic bar of reasonable reliability, it appears that DSM-5 is choosing to drastically lower that bar – what was previously seen as clearly unacceptable is now being accepted.

Kappa is a statistic that measures agreement among raters, corrected for chance agreement. Historically, kappas above 0.8 are considered good, above 0.6 fair, and under 0.6 poor. Before this AJP commentary, no one has ever felt comfortable endorsing kappas so low as 0.2-0.4. As a comparison, the personality section in DSM III was widely derided when its kappas were around 0.5. A kappa between 0.2-0.4 comes dangerously close to no agreement. ‘Accepting’ such low levels is a blatant fudge factor – lowering standards in this drastic way cheapens the currency of diagnosis and defeats the whole purpose of providing diagnostic criteria.

Why does this matter? Good reliability does not guarantee validity or utility – human beings often agree very well on things that are dead wrong. But poor reliability is a certain sign of very deep trouble. If mental health clinicians cannot agree on a diagnosis, it is essentially worthless. The low reliability of DSM-5 presaged in the AJP commentary confirms fears that its criteria sets are so ambiguously written and difficult to interpret that they will be a serious obstacle to clinical practice and research. We will be returning to the wild west of idiosyncratic diagnostic practice that was the bane of psychiatry before DSM III.

2) The commentary also states: “one contentious issue is whether it is important that the prevalence for diagnoses based on proposed criteria for DSM-5 match the prevalence for the corresponding DSM-IV diagnoses” …. “to require that the prevalence remain unchanged is to require that any existing difference between true and DSM-IV prevalence be reproduced in DSM-5. Any effort to improve the sensitivity of DSM-IV criteria will result in higher prevalence rates, and any effort to improve the specificity of DSM-IV criteria will result in lower prevalence rates. Thus, there are no specific expectations about the prevalence of disorders in DSM-5.”

This is also a fudge. For completely unexplained and puzzling reasons, the DSM-5 field trials failed to measure the impact of its proposals on rates of disorder. These quotes in the commentary are an attempt to justify this fatal flaw in design. The contention is that we have no way of knowing what true rates of a given diagnosis should be – so why bother to measure what will be the likely impact on rates of the DSM-5 proposals. If rates double under DSM-5, the assumption will be that it is picking up previous false negatives with no need to worry about the risks of creating an army of new false positives.

This is irresponsible for two reasons. First off, we are already suffering from serious diagnostic inflation. Rates of psychiatric disorder are already sky high (25% in the general population in any year; 50% lifetime) and we recently have experienced three runaway false epidemics of childhood disorders in the past 15 years. Second, drug company marketing has been so abusive as to warrant enormous fines and so successful as to result in widespread misuse of medication for very questionable indications. Recent CDC data suggest that the severely ill remain very undertreated, but that the mildly ill or not ill at all have become massively overtreated, especially by primary care physicians.

The DSM-5 proposals will uniformly increase rates, sometimes dramatically. Not to have measured by how much is unfathomable and irresponsible. The new diagnoses suggested for DSM-5 will (mis)label people at the very populous boundary with normality. Mixed anxiety depression and binge eating disorder will likely have astounding high rates between 5-10% – that’s tens of millions people now considered ‘normal’ suddenly converted into mentally ill by arbitrary DSM-5 fiat. Psychosis risk and disruptive mood disorder will be extremely common in the young; minor neurocognitive among the elderly. Legions of the recently bereaved will be misdiagnosed as clinically depressed; rates of generalized anxiety and addiction will mushroom; and ADD which has already almost tripled will find even more room at the top. The field trial developers seem either unaware or insensitive to the unacceptable risks involved in creating large numbers of false positive, pseudo-patients.

Indeed, quite contrary to the blithe assertions put forward in the commentary, we should have rigorous expectations about prevalence changes triggered by any DSM revision. Rates should not be wildly different for the same disorder UNLESS there is clear evidence of a serious false negative problem and firm protections against creating a massive false positive problem. And new disorders with high prevalences should not be included without substantial scientific evidence and convincing proof of accuracy, reliability, and safety. We have known since they were first posted that none of the DSM-5 proposals comes remotely close to meeting a minimal standard for accuracy and safety. And now, the AJP commentary seems to be softening us up for the bad news that their reliability is also lousy.

The workers on DSM-5 ignore the often dire implications of drastically raising the prevalence of an existing disorder or adding an untested new disorder with high prevalence – i.e., the misguided and potentially harmful treatment, the unnecessary stigma, and rising health care costs that also cause a misallocation of very scarce resources. Just two examples. Do we really want even more antipsychotic medications prescribed for children, the elderly, and returning war veterans when these are already being used so loosely and inappropriately? Isn’t the current legal and illegal overuse of stimulant medications already a big enough problem without introducing a drastically lowered set of criteria for diagnosing ADD? Sad to say, DSM-5 has failed to do an adequate risk/benefit analysis on any of its suggestions. Every one of its changes is designed to chase elusive false negatives; none protects the interests of mislabeled false positives.

Given our country’s current binge of loose diagnostic and medication practice (particularly by the primary care physicians who do most of the prescribing), DSM-5 should not be in the business of casually raising rates and offering inviting new targets for aggressive drug marketing. Instead, DSM-5 should be working in the opposite direction – taking steps to increase the precision and specificity of its diagnostic criteria. And the texts describing each disorder should contain a new section warning about the risks of overdiagnosis and ways of avoiding it. It is impossible to say what is the “right” prevalence of any disorder, but it is careless and reckless to so dramatically increase the prevalences of mental disorders without evidence of need or proof of safety.

The DSM-5 field trials have cost APA at least $3 million (perhaps a whole lot more). They started off on the wrong foot by asking the wrong question – focusing only on reliability and completely ignoring prevalence. The deadlines for starting the trials and for delivering results have been repeatedly postponed because of poor planning, an excessively cumbersome design, and disorganized implementation. The results will be arriving at the very last minute when decisions should have already be made. And now we get a broad hint that the reliabilities, when they are finally reported, will be disastrously low.

What should be done now as DSM-5 enters its depressing endgame? There really is no rational choice except to drop the many unsupportable DSM-5 proposals and to dramatically improve the imprecise writing that plagues most of the DSM-5 criteria sets.

DSM-5: How Reliable Is Reliable Enough?
DSM 5 is willing to except poor quality.

Allen Frances, MD | January 18, 2012

This is the title of a disturbing commentary written by the leaders of the DSM 5 Task Force and published in this month’s American Journal of Psychiatry. The contents suggest that we must lower our expectations and be satisfied with levels of unreliability in DSM 5 that historically have been clearly unacceptable. Two approaches are possible when the DSM 5 field trials reveal low reliability for a given suggestion: 1) admit that the suggestion was a bad idea or that it is written so ambiguously as to be unusable in clinical practice, research, and forensics; Or, 2) declare by arbitrary fiat that the low reliability is indeed now to be relabeled ‘acceptable’.

In the past, ‘acceptable’ meant kappas of 0.6 or above. When the personality disorders in DSM III came in at 0.54, they were roundly derided and given only a reluctant bye. For DSM 5, ‘acceptable’ reliability has been reduced to a startling 0.2-0.4. This barely exceeds the level of agreement you might expect to get by pure chance.

Previously in its development, DSM 5 has placed great store in its field trials. This quote is from the Chair of the DSM 5 Task Force: “There’s a myth that all the decisions have been made, when in fact, all the decisions haven’t been made. Just because things have been proposed doesn’t necessarily mean they’ll end up in the DSM-5. If they don’t achieve a level of reliability, clinician acceptability, and utility, it’s unlikely they’ll go forward.”

And this quote is from a 2010 interview given to a science writer by the head of the DSM 5 Oversight Committee: “It’s going to be based on the work of the field trials – based on the assessment and analysis of them. I don’t think anyone is going to say we’ve got to go forward if we get crappy results.”

The DSM 5 tune has now changed dramatically. The commentary written for AJP by the leadership of DSM 5 Task Force appears to be suggesting that they will, in fact, “go forward,” and with sub par reliabilities of 0.2-0.4. Now consider that the original field trial plan was to have a second phase to permit fixing those diagnostic criteria that were found to have unacceptable reliability in the first phase. These would go back to the workgroups who could then rewrite the offending criteria and retest the new version in the second phase of the field trial. But poor planning and administrative foul-ups kept pushing back the field trials so that they are now at least 18 months late in completion. As time was running out, DSM 5 leadership quietly dropped the second phase of the field trials, removing any reference to it from the timeline posted on the DSM-5 website. Their Plan B substitute for adequate field testing appears in AJP- To wit: a drastic lowering of the bar for what is ‘acceptable’ reliability.

Can ‘accepting’ unacceptably poor agreement uphold the integrity of psychiatric diagnosis? Poor reliability degrades our ability to communicate with one another clinically, and prohibits meaningful research. ‘Accepting’ as reliable kappas of 0.2-0.4 is to go backwards more than thirty years to the days of DSM II. Before DSM III, Bob Spitzer and Mel Sabshin saw the need to develop a criterion based system that could achieve reasonable diagnostic agreement. This is the very minimum condition necessary for current clinical work and future progress in psychiatry.

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

Shortlink Post #129: http://wp.me/pKrrB-1Fn

The fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on November 8-9, 2011.

Minutes and Committee’s Recommendations to HHS have now been posted on the CFSAC website.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) 

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;
• the science and definition of CFS; and
• broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.

The Meetings page is here

               Minutes Day One CFSAC Fall 2011 meeting

               Minutes Day Two CFSAC Fall 2011 meeting

Presentations, Public Testimony and links for Videos for Day One and Day Two

 

The Agenda item with the most relevance for this site was the issue of the current proposals for chapter placement and coding for Chronic fatigue syndrome in the forthcoming US specific ICD-10-CM, the proposals presented for consideration at the September meeting of the ICD-9-CM Coordination and Maintenance Committee on behalf of the Coalition for ME/CFS, and an alternative proposal presented by NCHS.

See this Dx Revision Watch post (Post #118, December 27, 2011) for a report on the Fall 2012 Meeting presentation by Donna Pickett (NCHS) and discussions of proposals for ICD-10-CM:

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item:

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)

 

Recommendations out of the Fall 2011 CFSAC Meeting

CFSAC Recommendations – November 8-9, 2011

The specific recommendations articulated by the Committee are:

1. This recommendation addresses the process by which CFSAC transmits recommendations to the Secretary and the Secretary communicates back to CFSAC whether or not a recommendation was acted upon. CFSAC recommends that this process be transparent and clearly articulated to include regular feedback on the status of the committee’s  recommendations. This communication could originate directly from the Office of the Secretary or be transmitted via the relevant agency or agencies.

2. CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

3. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort.

4. This multi‐part recommendation pertains to classification of CFS in ICD classification systems:

a) CFSAC considers CFS to be a multi‐system disease and rejects any proposal to classify CFS as a psychiatric condition in the U.S. disease classification systems.

b) CFSAC rejects the current classification of CFS in Chapter 18 of ICD‐9‐CM under R53.82, chronic fatigue unspecified, chronic fatigue syndrome, not otherwise specified.

c) CFSAC continues to recommend that CFS should be classified in ICD‐10‐CM in Chapter 6 under Diseases of the Nervous System at G93.3 in line with ICD‐10, the World Health Organization, and ICD‐10‐CA, the Canadian Clinical Modification and in accordance with CFSAC’s recommendations of August 2005 and May 2011. CFSAC rejects CDC’s National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as myalgic encephalomyelitis because CFS includes both viral and non‐viral triggers.

d) CFSAC recommends that an “excludes one” [sic *] be added to G93.3 for chronic fatigue, R53.82, and neurasthenia, F48.8. CFSAC recommends that these changes be made in ICD‐10‐CM prior to its rollout in 2013.

This final recommendation was also provided to the National Center for Statistics at the CDC prior to the November 18, 2011 deadline for comments along with the following rationale:

We feel that the interests of patients, the scientific and medical communities, continuity and logic are best served by keeping CFS, (B)ME (Benign Myalgic Encephalomyelitis) and PVFS (Post Viral Fatigue Syndrome) in the same broad grouping category. Current scientific evidence would indicate there are more similarities between the three entities than there are differences. Whether they are synonyms for the same underlying concept, disease entities and sub‐entities, or merely the best coding guess is unclear. In reality, any or all of the above may be correct. While the  relationship between CFS, B(ME) and PVFS is not stated, that they are grouped together in ICD 10 (WHO) would indicate some rationale for a connection. Our understanding is that this association will be maintained in the ICD 11, which may also include further description of the relationship. Exclusions specific to chronic fatigue (a symptom present in many illnesses) and neurasthenia (not a current diagnosis) also seem to be under consideration for ICD 11.

*Ed: Should be “Excludes1″. For definitions for “Excludes1″ and “Excludes2″ see Post #118

               November 2011 Recommendations Letter to the Secretary (PDF 31 KB)

               November 2011 CFSAC Recommendations Chart (PDF 138 KB)

The Minute for Ms Pickett’s presentation “International Classification of Diseases—Clinical Modification (ICD‐CM) Donna Pickett, National Center for Health Statistics (NCHS/Centers for Disease Control and Prevention)” and Committee discussions in response to that presentation can be found on Pages 4-10 of the PDF for Minutes Day One (November 8, 2011).

Video of presentation in Post #118. Ms Pickett’s presentation slides here in PDF format.

The Minute for the proposal and unanimous approval of a revised and expanded Recommendation to HHS on the coding of CFS in ICD-10-CM can be found on Pages 43-44 of the PDF for Minutes Day Two (November 9, 2011). Video in Post #118.

As reported in Post #118, following the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee, NCHS had invited comments from stakeholders on the proposals in Option 1 (presented by the Coalition for ME/CFS) and Option 2 (alternative proposals by NCHS).

The closing date for comments was November 18, 2011.

A decision was expected before the end of December but since any decision that might have been reached on these proposals has yet to be announced, I have raised some queries with Ms Pickett around the decision making process (see Post #118). I will update when a response has been received from Ms Pickett’s office or a public announcement made.

 

Related post

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item: 

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS), November 27, 2011

New DSM-5 Development docs: Reliability and Prevalence in the DSM-5 Field Trials

New DSM-5 Development documents: Reliability and Prevalence in the DSM-5 Field Trials

Post #128 Shortlink: http://wp.me/pKrrB-1F1

Two new documents have been posted on the American Psychiatric Association’s DSM-5 Development website.

(“What’s New” box on right of Home page)

 

                    Q & A on DSM-5 Prevalence and Reliability January 12, 2012

                    Reliability and Prevalence in the DSM-5 Field Trials January 12, 2012

Based on the The American Journal of Psychiatry article 

                    DSM-5: How Reliable Is Reliable Enough?

The American Journal of Psychiatry | January 01, 2012

Helena Chmura Kraemer, Ph.D.; David J. Kupfer, M.D.; Diana E. Clarke, Ph.D.; William E. Narrow, M.D., M.P.H.; Darrel A. Regier, M.D., M.P.H. January 01, 2012, Vol. 169. No. 1

 

Commentary from Allen Frances, MD, Psychiatric Times, January 09, 2012:

Two Fallacies Invalidate the DSM-5 Field Trials
By Allen Frances, MD | 09 January 2012

(Free registration required to view Psychiatric Times.)

“The designer of the DSM-5 Field Trials has just written a telling commentary in the American Journal of Psychiatry (AJP). She makes what I consider to be 2 basic errors that reveal the fundamental worthlessness of these Field Trials and their inability to provide any information that will be useful for DSM-5 decision making…”

Read on

DSM 5 Censorship Fails: Support From Professionals and Patients Saves Free Speech: Allen Frances

DSM 5 Censorship Fails: Support From Professionals and Patients Saves Free Speech by Allen Frances

Post #127 Shortlink: http://wp.me/pKrrB-1ER

Psychology Today

DSM5 in Distress
The DSM’s impact on mental health practice and research.
by Allen Frances, M.D. (Chair, DSM-IV Task Force and currently professor emeritus at Duke.)

DSM 5 Censorship Fails
Support From Professionals and Patients Saves Free Speech

Allen Frances, M.D. | January 12, 2012

Last week I described the plight of Suzy Chapman, a well respected UK patient advocate forced to change the domain name of her website by the heavy handed tactics of the publishing arm of the American Psychiatric Association. The spurious legal excuse was commercial protection of the ‘DSM 5′ trademark; the probable intent was to stifle one of the internet’s best sources of DSM and ICD information. This bullying could not have come at a worse time – just as final decisions are being made on highly controversial DSM 5 proposals and with the third and final draft due for release this spring. This is precisely when a ragged and reckless DSM 5 can most benefit from the widest and most open discussion.

Though APA’s trademark claims were patently absurd, Ms Chapman did not have the necessary resources for a protracted fight against a well staffed legal department. Visits plummeted drastically to her new web address (reaching a nadir of just one hit per day) and the site faced months of slow recovery. But the good news is that APA’s clumsy attempt at censorship has backfired, free speech will prevail, and the site is now more popular than ever.

Suzy Chapman writes:

“I want to thank the many psychiatrists, allied mental health professionals, and science writers who have spoken out in opposition to what they see as arrogant censorship on the part of the American Psychiatric Association. Their outpouring of concern has generated considerable interest on websites, blogs and social media platforms. This has increased the traffic on my site by many hundreds of visitors per day. The support of professionals and patient groups illustrates the power of the internet to resist suppression of patient advocacy and to promote free speech.”

“The purpose of my site is to raise public and stakeholder awareness of the forthcoming revisions of both DSM-5 and ICD-11. I endeavor to provide timely and accurate information about DSM-5, including: internet commentaries on proposals; flag ups of journal papers and editorials; news releases and other media statements; and updates on changes to the DSM-5 timeline. I also cover progress on ICD-11, including activities of the Revision Steering Group; documents, presentations and videos; and updates on the ICD-11 timeline. I report on developments with the forthcoming US ICD-10-CM and proceedings of a US federal Advisory Committee to HHS in relation to coding issues. Finally, I follow the advocacy campaigns and initiatives relating to DSM and ICD classificatory issues. My objective is to help stakeholders understand the issues so that they may provide the most useful feedback to the revision process.”

“Despite all the controversies, despite the calls for independent review, despite all the delays and limitations of its field trials, DSM-5 hurtles forward towards publication in May 2013. During this final, decisive year of DSM 5 decision making, I shall continue to publish information, updates and commentaries to promote the widest possible dialogue around the drafting of this most important publication. My new site, ‘Dx Revision Watch – Monitoring the development of DSM-5, ICD-11, ICD-10-CM’ can be found at: http://dxrevisionwatch.wordpress.com/

“This experience has taught me that the APA trademark claims were not only misguided, but probably legally indefensible. ‘Nominative fair use’ is permitted those who are publishing criticism within texts if use of the trademark is relevant to the subject of discussion or necessary to identify the product, service, or company. Courts have found that non-misleading use of trademarks in the domain names of critical websites (like walmartsucks.com) is to be considered ‘fair use’ by non-commercial users – so long as there is no intent to misrepresent or confuse visitors to the site and when it is clear that the site owner is not claiming endorsement by, or affiliation to, the holder of the mark.”

“Everything I have read suggests that my clearly non-commercial use of my previous subdomain name (dsm5watch.wordpress.com) – with its prominent disclaimer and no intent to mislead – falls well within the concept of ‘fair use’. This then raises the obvious question – what grounds did APA have for serving me with demands and threats of possible legal action? Several people have independently sent me materials on ‘SLAPP’ lawsuits (strategic lawsuit against public participation). These are threats of legal action intended to censor, intimidate, and silence critics by burdening them with the cost of a legal defense – so that they will abandon their criticism or opposition.”

“If you are interested in learning more about ‘SLAPP’ lawsuits, there is a good summary at
http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

“The Electronic Frontier Foundation is also a very useful resource for legal advice on trademark law for blog and website owners. See http://www.eff.org/issues/bloggers/legal/liability/IP

“The surprisingly spirited and unanimous internet reaction provoked by the APA’s actions will probably discourage it from future pursuit of other ‘fair use’ site owners. I certainly hope so. But if other site owners are issued inappropriate ‘cease and desist’ claims, I do hope they have the resources to seek legal advice before complying.”

“I am very grateful for all the support received in the past week and the many emails thanking me for the work I do. It is gratifying to hear that not only do patients, caregivers and patient organizations rely on my carefully researched and presented content, but that so many professionals are also following my site and find it useful. This experience has been stressful, but I can now say confidently that APA’s actions have definitely backfired –  the many hundreds of additional viewers discovering the site each day will expand its audience and its usefulness.”

All of us owe great thanks to Ms Chapman and to the internet community whose ringing endorsement has allowed her not only to maintain, but also to enlarge, her readership. Ms Chapman will continue to provide the field with the most current and most accurate reporting on DSM 5 during its endgame. I strongly recommend her website as the best clearinghouse for information on DSM 5.

I join Ms Chapman in hoping that this embarrassing episode will discourage APA from all future efforts at abusive censorship – whether they are related to trademark, copyright, or confidentiality agreements. The field must remain vigilant in its efforts to contain APA commercialism and persistent in trying to penetrate APA’s secrecy and inbred decision making. APA must finally come to realize that DSM 5 is an open public trust, not a private business enterprise.


 

Related material:

DSM 5 A Public Trust Or An APA Cash Cow? Commercialism And Censorship Trump Concern For Quality, Allen Frances, M.D., Psychology Today, January 03, 2012

Further media coverage of the APA cease and desist v DSM-5 Watch website issue collated here:  Post #123

Article on “cease and desist” issue: Pity the poor American Psychiatric Association, Parts 1 and 2 by Gary Greenberg

 

Legal information and resources for bloggers and site owners:

1] Wipedia article: Cease and desist
http://en.wikipedia.org/wiki/Cease_and_desist

2] Wipedia article: Strategic lawsuit against public participation (SLAPP)
http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

3] Electronic Frontier Foundation (EFF)
http://en.wikipedia.org/wiki/Electronic_Frontier_Foundation
http://www.eff.org/

EFF Bloggers’ Rights
https://www.eff.org/bloggers

EFF Legal Guide for Bloggers
https://www.eff.org/issues/bloggers/legal

4] Chilling Effects
http://en.wikipedia.org/wiki/Chilling_Effects_(group)

http://chillingeffects.org/

Chilling Effects FAQ on Trademark Law
http://www.chillingeffects.org/trademark/faq.cgi#QID251

Chilling Effects on Protest, Parody and Criticism Sites
http://www.chillingeffects.org/protest/

5] U.S. Trademark Law, Rules of Practice & Federal Statutes , U.S. Patent & Trademark Office, November 2011 http://www.uspto.gov/trademarks/law/tmlaw.pdf