DSM-5 Task Force Ponders Round 2 of Public Feedback: Deborah Brauser for Medscape Medical News

DSM-5 Task Force Ponders Round 2 of Public Feedback: Deborah Brauser for Medscape Medical News

Post #110 Shortlink: http://wp.me/pKrrB-1lA

The American Psychiatric Association’s DSM-5 Task Force published no breakdowns for the number of submissions received by each of its 13 Work Groups during the first and second public stakeholder reviews of draft proposals for revision of DSM-IV categories and criteria.

Nor has the Task Force made public lists of names of those professional bodies, organizations and institutions that have submitted feedback.

These stakeholder reviews of draft proposals are not organized as formal consultation processes and few organizations appear to receive any response from the Task Force.

But the British Psychological Society (BPS) did receive a reply to their critical submission, published in June, and the response from Dr Darrel Regier, Vice-Chair of the DSM-5 Task Force, can be read here.

At the end of August, Deborah Brauser, writing for Medscape Medical News, reported on the closure of the second public stakeholder review with quotes from DSM-5 Task Force Chair, David Kupfer, MD, around which DSM categories had received the greatest number of responses during the second review.

Ms Brauser reports:

“According to Dr. Kupfer, the specific diagnostic categories that received the most feedback were sexual and gender identity disorders, followed closely by somatic symptom and anxiety disorders.”

“In addition, the Neurodevelopmental Work Group continued to receive commentary on the issue of autism. But I think it was much, much less than it had received previously. After that, there was a reasonable drop-off in the other groups,” he said.

“Substance abuse and mood disorders received the next highest number of comments, followed by personality disorders.”

On May 4, the Task Force posted revised draft proposals for categories and criteria on its DSM-5 Development website with no prior announcement on the site, itself, and with no news release being issued by the APA. The comment period, which had been scheduled to run only until June 15, was extended by an additional four weeks on the day after it had been due to close.

There were 2120 individual comments in the second public review. 8600 comments were reported to have been received during the first public review, in the Spring of 2010.

A third and final public feedback period is scheduled for early 2012. The full Medscape report can be read here.

 

Medscape Medical News > Psychiatry

DSM-5 Task Force Ponders Round 2 of Public Feedback

New Diagnostic Manual Still on Track for Publication in 2013

by Deborah Brauser | August 31, 2011

Deborah Brauser is a freelance writer for Medscape

August 31, 2011 — The second public feedback period for the upcoming Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), ended July 15 and has garnered more than 2000 registered comments.

In an interview with Medscape Medical News, David Kupfer, MD, chair of the American Psychiatric Association’s (APA’s) DSM-5 Task Force, said the distribution of comments was “somewhat similar to the first go-round.”

Read full article

Related information

1] DSM-5 Development: http://www.dsm5.org/Pages/Default.aspx

2] DSM-5 Timeline: http://www.dsm5.org/about/Pages/Timeline.aspx

3] “Somatic Symptom Disorders” proposals: http://www.dsm5.org/proposedrevision/Pages/SomaticSymptomDisorders.aspx

4] Published response by the British Psychological Society to the DSM-5 2nd Review of Draft Proposals, June 2011: http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5%202011%20-%20BPS%20response.pdf

5] Response to above from Darrel Regier, MD, Vice-Chair, DSM-5 Task Force, July 2011: http://www.thepsychologist.org.uk/blog/11/blogpost.cfm?threadid=2102&catid=48

Coalition 4 ME/CFS – Letter to the Medical Community

Coalition 4 ME/CFS – Letter to the Medical Community

Post #109 Shortlink: http://wp.me/pKrrB-1kN

From Mike Munoz, via Co-Cure | October 25, 2011

On July 15, the Coalition 4 ME/CFS submitted a written proposal to the ICD-9-CM Coordination and Maintenance Committee to restore CFS to Chapter 6 “Diseases of the Nervous System” code G93.3 in the ICD-10 Clinical Modification (ICD-10-CM) in the US.

This action follows the September 2004, August 2005 and May 2011 recommendations of the federally-appointed Chronic Fatigue Syndrome Advisory Committee (CFSAC). In each case, the committee recommended that CFS be in the neurological classification in the ICD-10-CM, in line with the rest of the world.

On September 14, the Coalition 4 ME/CFS made an oral presentation to the committee and responded to concerns expressed by audience members.

The coalition has written a letter to clinicians, researchers and other medical professionals outlining the National Center for Health Statistics (NCHS) and the coalition option for modification

PDF: Coalition for ME/CFS Letter to the Medical Community

We have also included a sample letter for medical professionals and the public to give input rejecting NCHS’s option #2 in favor of the coalition’s proposal option

Html: Coalition for ME/CFS Sample Letter

We are asking medical professionals to comment on this important issue before the comment period ends on November 18.

Medical professionals wanting to add their signature to the coalition’s prepared letter to NCHS that will be submitted prior to the November 18 deadline can contact Mike Munoz at info@coalition4MECFS.org

More information concerning the coalition and the ICD initiative can be found at

http://coalition4mecfs.org/ICD-Home.html

Website: http://coalition4mecfs.org/

Facebook: https://www.facebook.com/home.php#!/pages/Coalition-4-ME-CFS/126612960745896

Twitter: https://twitter.com/#!/Coalition4MECFS

Contact: info@coalition4MECFS.org

The PDF of the Letter to the Medical Community can also be downloaded from Dx Revision Watch here: Coalition 4 ME/CFS Letter to Medical Community

 

Related material:

Comments on proposals need to be submitted by November 18.

Comments from stakeholders, preferably via email, should be submitted to:

Donna Pickett RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics – CDC
3311Toledo Road Hyattsville, MD 20782
Via email: nchsicd9CM@cdc.gov

You can download an Audio of the September 14 NCHS meeting here:

http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[Note this is a large Zipped file.  The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]

 

1] Full NCHS meeting Proposals document:

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

2] Full NCHS meeting Summary document:

http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

3] Post: Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

4] Post: Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

Media coverage: Open Letter and Petition to DSM-5 Task Force by Society for Humanistic Psychology

Round up 1: Media coverage: Open Letter and Petition to DSM-5 Task Force by Society for Humanistic Psychology

Post #108 Shortlink: http://wp.me/pKrrB-1jZ

An Open Letter and Petition sponsored by a coalition of several Divisions of the American Psychological Association has attracted nearly 7000 signatures since its launch on October 22.

The Petition sponsors are inviting mental health professionals and mental health organizations to sign up in support of an Open Letter to the American Psychiatric Association’s DSM-5 Development Task Force.

The Open Letter, which is highly critical of proposals for the revision of DSM-IV by American Psychiatric Association DSM-5 Work Groups, is sponsored by the Society for Humanistic Psychology (Division 32 of the American Psychological Association) in alliance with the following:

Open Letter and Petition Sponsors

Division of Behavioral Neuroscience and Comparative Psychology (Division 6 of APA)
Division of Developmental Psychology (Division 7 of APA)
Society of Counseling Psychology (Division 17 of APA)
Society for Community Research and Action: Division of Community Psychology (Division 27 of APA)
Division of Psychotherapy (Division 29 of APA)
Society for the Psychology of Women (Division 35 of APA)
Division of Psychoanalysis (Division 39 of APA)
Psychoanalysis for Social Responsibility (Section IX of Division 39 of APA)
Psychologists in Independent Practice (Division 42 of APA)
Society for the Psychological Study of Lesbian, Gay, Bisexual, and Transgender Issues (Division 44 of APA)
Society for Group Psychology and Psychotherapy (Division 49 of APA)
Society for the Psychological Study of Men & Masculinity (Division 51 of APA)

Association for Counselor Education and Supervision (Division of the American Counseling Association)
Association for Humanistic Counseling (Division of the American Counseling Association)
The Association for Creativity in Counseling (ACC, Division of the American Counseling Association)
The Association for Women in Psychology,
The Association of Lesbian, Gay, Bisexual, and Transgender Issues in Counseling (ALGBTIC)
Society of Indian Psychologists
National Latina/o Psychological Association
The Society for Personality Assessment,
The Society for Descriptive Psychology,
The UK Council for Psychotherapy (UKCP),
The Constructivist Psychology Network (CPN),
The Taos Institute
Psychoanalysis for Social Responsibility (Section IX of Division 39 of APA)

[See Coalition for DSM-5 Reform website for most recent list of official endorsers.]

For a copy of the coalition’s letter see previous Post #97 or go here iPetitions DSM-5

Media coverage is being collated below as it comes to my attention.

  

Media coverage

[See Coalition for DSM-5 Reform Tab page on Dx Revision Watch website for most recent media coverage.]

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Newsworks

Expanding catalog of mental disorders worries some

Maiken Scott | November 16, 2011

The so-called bible of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders, is getting a make-over. The latest version, DSM 5, will come out in 2013. In the meantime, conflicts over which diagnoses should be added, removed or changed are heating up.

Thousands of mental health professionals who are not happy with the direction of the new DSM are signing an online petition…

Read full article

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Irish Medical Times

Pat Kelly is Web Editor and Sub Editor at Irish Medical Times

DSM-V revisions may ‘stigmatise eccentric people’

Pat Kelly | November 15, 2011

Read full article

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American Counseling Association

ACA blogs, written by counselors, for counselors

Paul R. Peluso is a counselor and Associate Professor in the Department of Counselor Education at Florida Atlantic University

A Letter to my Colleagues on the DSM-5

Paul Peluso | November 15, 2011

When I read the response to the criticisms offered by Dr. Darrel A. Regier, vice-chair of the DSM-5 task force that the DSM is “a set of scientific hypotheses that are intended to be tested” I became deeply concerned. My first thought was: “When I go to my physician, I don’t want her to have a hypothesized diagnosis that she is going to test on me, I want her to know what is wrong and how to fix it!” And while Dr. Regier’s comment (and a subsequent one that he “hoped” that there would be regular updates to DSM 5, like software) might have been meant to ameliorate the criticism against DSM-5, the reality is that once it is published they will go from being “editable hypotheses” to “diagnostic canon” that insurance companies, government agencies, and courts will all hold clinicians to (to say nothing of the pharmaceutical industry), which will have serious consequences for the entire field. The problem is that the process and its proposed remedy fails to take into consideration the criticisms against it: namely, that it has been based on VERY shaky science (if any at all).

This should concern us all.

Read full commentary

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Russell Friedman is Executive Director of The Grief Recovery Institute, and co-author of The Grief Recovery Handbook, When Children Grieve, and Moving On.

Psychology Today

Broken Hearts

Exploring myths and truths about grief, loss, and recovery.
by Russell Friedman

Speaking out on behalf of millions of unsuspecting grievers

From Travesty to Potential Tragedy

Russell Friedman | November 4, 2011

The intent of this blog post is to encourage you to read and sign a petition titled, Open Letter to the DSM-5. We are particularly focused on the proposed change in the bereavement exclusion which is one of the major protests in the petition. You can skip the blog and go directly to the petition: http://www.ipetitions.com/petition/dsm5/

The Dangerous DSM-5 Bereavement Exclusion Train Must Be Derailed BEFORE It Causes Permanent Harm To Unsuspecting Grievers

We are: John W. James and Russell Friedman, co-founders of The Grief Recovery Institute Educational Foundation, and co-creators of The Grief Recovery Method®. We are also co-authors of The Grief Recovery Handbook and When Children Grieve [both published by HarperCollins] and Moving On [M. Evans].

Read full commentary

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Labor Related blog

David Foley’s Labor and Employment Law Blog

Furor Over DSM-V

David Foley | November 12, 2011

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DSM5 in Distress

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

DSM 5- ‘Living Document’ or ‘Dead on Arrival: ‘untested ‘scientific hypotheses’ must be dropped

Allen J. Frances, MD | November 11, 2011

News flash From Medscape Medical News—“APA Answers DSM-5 Critics”—a defense of DSM-5 offered by Darrel A. Regier, MD, vice-chair of the DSM-5 Task Force. Wonderful news that the American Psychiatric Association (APA) is attempting to address the fact that DSM-5 alarms many of its potential users—it is long past time for an open dialog.

Unfortunately, however, Dr Regier dodges the concerns that must be addressed if DSM-5 is to become a safe and credible document. Five simple questions were previously posed to APA with a request for straight answers…

Read full commentary

also at

Psychiatric Times

(Registration for Psychiatric Times site required)

DSM-5: Living Document or Dead on Arrival

Allen J. Frances, MD | November 11, 2011

Read full commentary   

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DSM5 in Distress

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

The User’s Revolt Against DSM 5
will it work?

Allen J. Frances, MD | November 10, 2011

When it comes to DSM 5, experience has proven conclusively that the American Psychiatric Association (APA) will not attend to the science, evaluate the risks, or listen to reason. A user’s revolt has become the last and only hope for derailing the worst of the DSM 5 suggestions…

…Will the petition work?

Read full commentary

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USA Today

Psychologists challenge proposed new diagnoses in DSM-5

Rita Rubin, Special for USA TODAY | November 10, 2011

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Forbes

The New Mental Health Disorders Manual Is Driving Psychologists Nuts

Forbes | November 10, 2011

The new manual of mental disorders coins bizarre new psychological disorders, lowers the threshold for diagnosing old ones, and has some critics pulling their hair out…

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Psychology Today

DSM-5 in Distress

APA Responds Lamely to the Petition to Reform DSM 5
How about straight answers to simple questions?

Allen J. Frances, MD | November 8, 2011

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Registration is required in order to view Medscape article

Medscape Medical News > Psychiatry

APA Answers DSM-5 Critics

Deborah Brauser | November 9, 2011

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Before you take that pill

New Questionable Diagnoses on the Horizon from the DSM-5 Committee

Doug Bremner | November 8, 2011

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The Great DSM-5 Personality Bazaar

James Phillips, MD | November 7, 2011

Evaluating the evaluation

There is something quite elegant about the DSM-5 Personality Disorders diagnostic system—an architectonic of divisions, subdivisions, and sub-subdivisions. On the other hand, for all their scholastic erudition, the work group have created a monster—a bloated, pedantic, cumbersome diagnostic instrument that will never be used by anyone working in the hurly-burly of clinical practice. Just imagine doing a routine new-patient evaluation and trying to include the personality disorder assessment, each of the first two criteria with its many-item scale, each item to be scored on a 4- or 5-point rating system. It’s hard to imagine anyone having the patience or motivation to use this instrument.”

Read full article

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Registration is required in order to view Medscape article

Medscape Medical News > Psychiatry

Petition Calls for Critical Changes to Upcoming DSM-5

Group Says It Has ‘Serious Reservations’ About Lowering Diagnostic Thresholds

Deborah Brauser | November 4, 2011

November 4, 2011 — Divisions of the American Psychological Association have created an online petition addressing “serious reservations” about the upcoming Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5). Launched October 22, the petition has already garnered more than 3000 signatures from mental health professionals, students, and organizations.

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Psychology Today

DSM-5 in Distress

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

Why Psychiatrists Should Sign the Petition to Reform DSM 5 the fight for the future of psychiatry

Allen J. Frances, MD | November 4, 2011

Psychiatrists may be more reluctant than are other mental health clinicians to sign a petition questioning the safety and value of DSM 5. After all, it is the American Psychiatric Association that is sponsoring DSM 5 and there is a natural tendency to want to trust the wisdom of one’s own Association. We also tend to feel the greatest loyalty to our profession when it seems to be under sharp attack from without.

All this is completely understandable to me. I have not felt the least bit comfortable assuming the role fate assigned me as critic of DSM 5 and of the APA. It was a case of responsibility calling and my feeling compelled to answer. If DSM 5 were not proposing some really dangerous changes, I would have stayed comfortably on the sidelines. But I think DSM 5 is too risky to ignore and that all psychiatrists should feel the same call that I did to restrain it before it is too late.

Read full commentary

also on Psychiatric Times (Registration for Psychiatric Times site required)

Why Psychiatrists Should Sign the Petition to Reform DSM 5

Allen J. Frances, MD | November 4, 2011

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More from Allen J Frances, MD

DSM5 in Distress

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

by Allen Frances, M.D.

Why Doesn’t DSM 5 Defend Itself?

Perhaps because no defense is possible

Allen J. Frances, MD | November 3, 2011

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Nature.com

Nature News

Mental-health guide accused of overreach

Dispute grows over revisions to diagnostic handbook.

Heidi Ledford | Published online November, 2 2011

Nature 479, 14 (2011) | doi:10.1038/479014a

Corrected online: 3 November 2011

Psychologist David Elkins had modest ambitions for his petition. He and his colleagues were worried that proposed changes to an influential handbook of mental disorders could classify normal behaviours as psychological conditions, potentially leading to inappropriate treatments. So they laid out their concerns in an open letter, co-sponsored by five divisions of the American Psychological Association in Washington DC. “I thought, ‘Well, maybe we’ll get a couple or maybe 30 signatures’,” says Elkins, an emeritus professor at Pepperdine University in Malibu, California.

But the letter, posted online on 22 October (http://www.ipetitions.com/petition/dsm5/), touched a nerve. Within 10 days more than 2,800 people had signed it, many identifying themselves as mental-health professionals…

Read full article

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Psychology Today Do the Right Thing

Thomas Plante, Ph.D., ABPP, is Professor of Psychology and Director of the Spirituality and Health Institute at Santa Clara University

All the Fuss with DSM-5: The Ethics of the Psychiatric Bible Is DSM5 sacred scripture?

Thomas G. Plante, Ph.D | November 1, 2011

There has been a great deal of controversy already about DSM5 and it isn’t scheduled to be published until May 2013! So, what’s up with that?

You may have heard of some of the controversy surrounding the new edition of the DSM, the “psychiatric bible,” published periodically by the American Psychiatric Association. It is the “go to” document that defines all mental health disorders and is used for diagnosis, treatment approaches, and perhaps most especially, for insurance coverage and reimbursement for professional psychiatric services. If you are a mental health professional or a patient of a mental health professional, this is an important document…

Read full commentary

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A sixth commentary from Allen J Frances 

(Registration for Psychiatric Times site required)

Psychiatric Times

DSM-5 Will Not Be Credible Without An Independent Scientific Review

Allen J Frances, MD | November 2, 2011

After all this controversy and opposition, there is one thing (and one thing only) that will save the credibility of DSM-5 and guarantee its safety – a credible process of external scientific review. APA is conducting its own internal scientific review, but it strikes out badly on all 4 requirements that must be met before a review deserves to be taken seriously as a trustworthy stamp of approval…

Read full text

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A fifth commentary from Allen J Frances 

Psychology Today

Blogs

DSM5 in Distress

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

Dr Frances was Chair of the DSM-IV Task Force and is Professor Emeritus of the Department of Psychiatry at Duke University School of Medicine

DSM 5 Against Everyone Else Its Research Types Just Don’t Understand The Clinical World

Allen J Frances, MD | DSM5 in Distress | November 1, 2011

also at

Psychiatric Times

(Registration for Psychiatric Times site required)

DSM-5 Against Everyone Else: Research Types Just Don’t Understand The Clinical World

Allen J Frances, MD  | November 1, 2011

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Psychology Today

Blogs

Side Effects

From quirky to serious, trends in psychology and psychiatry.

by Christopher Lane, Ph.D.

Saving Psychiatry from Itself: The DSM-5 Controversy Heats Up Again

Why an Open Letter to the DSM-5 task force is generating widespread interest

Christopher Lane, PhD | October 31, 2011

Last weekend, without any fanfare or publicity, the Society for Humanistic Psychology, a division of the American Psychological Association, posted an open letter to the DSM-5 task force listing in precise, scholarly detail its many concerns about the edition’s working assumptions, procedures, and recommendations. Three other APA Divisions supported the move, which also was endorsed by the Association for Women in Psychology, the Society for Descriptive Psychology, and the UK Council for Psychotherapy (UKCP).

In the space of just a week, the open letter has caught fire…

Read full commentary

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A fourth commentary from Allen J Frances 

Dr Frances was Chair of the DSM-IV Task Force and is Professor Emeritus of the Department of Psychiatry at Duke University School of Medicine

Psychology Today

What Would A Useful DSM 5 Look Like? And An Update On The Petition Drive

Allen J Frances, MD | DSM5 in Distress | October 31, 2011

The petition to reform DSM 5 continues to gain momentum. After just one week, more than 2000 people have expressed their disapproval of the DSM 5 proposals and their desire to see dramatic changes. You can join them at http://www.ipetitions.com/petition/dsm5/.

Read full commentary

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The Constructivist Psychology Network | October 30, 2011

CPN Supports DSM-5 Petition 

The Constructivist Psychology Network has signed a petition supporting an open letter by psychologists to the DSM-5 task force. The open letter objects to many of the proposed revisions being considered by the for inclusion in its forthcoming DSM-5.

Read full statement

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Psychology Today

Rethinking Depression

How to shed mental health labels and create personal meaning

by Eric Maisel, Ph.D. | October 28, 2011

The DSM-5 Controversy

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The UK Council for Psychotherapy (UKCP)

UKCP signs an online petition about DSM-5 | October 26, 2011

UKCP has signed an online petition which expresses serious reservations about the proposed content of the future DSM-5. In the latest issue of The Psychotherapist (issue 49, autumn 2011), Tom Warnecke explains the controversy surrounding the forthcoming fifth edition of the DSM (Diagnostic and Statistical Manual of Mental Disorders)…

Read full text

PDF The Psychotherapist (issue 49, autumn 2011) , Page 24, Mass psychosis or the brave new world of DSM-5: Tom Warnecke

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A second blog from Karen Franklin

Forensic Psychologist

Karen Franklin Ph.D. | October 27, 2011

DSM-5 petition takes off like wildfire

Karen Franklin, Ph.D. is a forensic psychologist and adjunct professor at Alliant University in Northern California.

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A second commentary  from Allen J Frances 

Psychiatric Times

DSM-5 Blog

Petition Against DSM-5 Gets Off To Racing Start: A Game Changer?

By Allen J Frances, MD | October 26, 2011

Dr Frances was Chair of the DSM-IV Task Force and is Professor Emeritus of the Department of Psychiatry at Duke University School of Medicine

(Registration for Psychiatric Times site required)

also at Psychology Today | October 27, 2011

The Petition Against DSM 5 Gets Off To Fast Start

Could It Be A Game Changer

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Counseling Today

Psychologists circulate petition against DSM-5 revisions

CT Daily | October 24, 2011

Heather Rudow

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Britsh Psychological Society (BPS)

Psychologists petition against DSM-5 | October 25, 2011

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Psychology Today

DSM-5 in Distress

Dr Allen Frances

Psychologists Petition Against DSM-5: Users Revolt Should Capture APA Attention

By Allen J Frances, MD | October 24, 2011

Dr Frances was Chair of the DSM-IV Task Force and is Professor Emeritus of the Department of Psychiatry at Duke University School of Medicine

also (with registered access) same text at Psychiatric Times 

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Forensic Psychologist

Karen Franklin, Ph.D. | October 23, 2011

Psychology coalition urges rethinking of DSM-5 expansions

Karen Franklin, Ph.D. is a forensic psychologist and adjunct professor at Alliant University in Northern California.

Dr Franklin also blogs at Psychology Today Witness, A blog about forensic psychology

Open Letter and Petition to DSM-5 Task Force by Society for Humanistic Psychology (Division 32 of the American Psychological Association)

Open Letter and Petition to DSM-5 Task Force by Society for Humanistic Psychology (Division 32 of the American Psychological Association)

Post #107 Shortlink: http://wp.me/pKrrB-1jI

Update @ January 11, 2012: The third and final draft of proposals for changes to DSM-IV categories and criteria is delayed because field trials and evaluations are running behind schedule and extended to March. The final draft is now expected to be released for public review and comment, “no later than May 2012″, according to DSM-5 Task Force Vice-chair, Darrel Regier, MD [1].

Third review of DSM-5 draft proposals on the horizon

This time last year, folk were mailing me saying – I don’t know why you bother continuing to monitor DSM-5 and ICD-11, XMRV is going to render the DSM-5 proposals meaningless.

Well that was then, and this is now. And in a couple of months’ time we’ll be anticipating the third and final public review and feedback on the APA’s draft proposals for changes to categories and criteria for the revision of DSM-IV.

During the first stakeholder feedback exercise, over 8,600 comments rolled in; during the second comment period (which was extended by an additional four weeks), the Task Force and work groups received over 2000 submissions.

According to the current DSM-5 Timeline:

September-November 2011: Work groups will be provided with results from both field trials and will update their draft criteria as needed. Field trial results and revised proposals will be reviewed at the November Task Force meeting.

January-February 2012: Revised draft diagnostic criteria will be posted on http://www.dsm5.org and open to a third public feedback period for two months. Feedback will be shared directly with work group members, and further edits to proposals will be made as needed.” [1]

According to the DSM-5 Development home page:

“…Following analysis of field trial results, we will revise the proposed criteria as needed and, after appropriate review and approval, we will post these changes on this Web site. At that time, we will again open the site to a third round of comments from visitors, which will be systematically reviewed by each of the work groups for consideration of additional changes. Thus, the current commenting period is not the final opportunity for you to submit feedback, and subsequent revisions to DSM-5 proposals will be jointly informed by field trial findings as well as public commentary…” [2]

Assuming the APA’s schedule remains on target, US and international patient organizations and advocates need to start preparing well in advance of the New Year for how best to engage our own medical and allied professionals in this process and encourage their input.

As soon as DSM-5 Draft 3 is posted on the DSM-5 Development site, I shall put out alerts on my websites, via Co-Cure and on other platforms and I shall be contacting UK patient organizations, as I have done for the previous two public review exercises.

But I hope that other advocates and groups, in the US and internationally, will work to take this forward and ensure that as many international patient organizations, ME and CFS clinicians and researchers, like those who collaborated on the new ME International Consensus Criteria, allied health professionals, medical lawyers, social workers and other end uses of the DSM are made aware of the proposals of the “Somatic Symptom Disorders” Work Group and the implications for ME, CFS, FM, IBS, CI, CS and GWS patient groups, and encouraged to submit comments as professional stakeholders.

 

Open Letter and Petition to DSM-5 Task Force

Today I was alerted to an Open Letter and Petition sponsored by the Society for Humanistic Psychology, Division 32 of the American Psychological Association, in alliance with the Society for Community Research and Action: Division of Community Psychology (Division 27 of APA) and the Society for Group Psychology and Psychotherapy (Division 49 of APA) [3]. (No press release, but I’ll update if one is issued.)

These American Psychological Association Divisions are inviting mental health professionals and mental health organizations to sign up in support of an open letter to the American Psychiatric Association’s DSM-5 Task Force.

Their response to DSM-5 structure and proposals may be of interest to psychiatrists and psychologists affiliated to, or on the boards of our own ME and CFS patient organizations.

The Open Letter to the DSM-5 Task Force can be read here and a copy is appended:

http://www.ipetitions.com/petition/dsm5/

Under the subheading “New Emphasis on Medico-Physiological Theory”, the Open Letter sponsors comment on some aspects of the DSM-5 proposals for the “Somatic Symptom Disorders” categories. The Open Letter also supports concerns set out within the formal response to DSM-5 draft proposals submitted by the British Psychological Society, earlier this year, and more recent concerns published by the American Counseling Association.

A couple of points: both the American Psychological Association, three of whose Divisions are sponsors of this Open Letter, and the American Psychiatric Association use the acronym “APA”. It is the American Psychiatric Association’s DSM-5 Task Force that is developing the DSM-5.

Secondly, although the first release of the DSM-5 draft proposals did have the diagnosis “Factitious Disorder” placed under “Somatic Symptom Disorders (SSDs)”, the most recent (May 2011) DSM-5 draft proposes placing “Factitious Disorder” under the diagnostic chapter “Other Disorders”, not within the SSDs, as the Open Letter, below, states [4], [5].

Suzy Chapman

[1] DSM-5 Development Timeline: http://www.dsm5.org/about/Pages/Timeline.aspx

[2] DSM Development website: http://www.dsm5.org/Pages/Default.aspx

[3] Society for Humanistic Psychology: http://www.apadivisions.org/division-32/index.aspx

[4] DSM-5 Draft Proposals, Somatic Symptom Disorders: http://www.dsm5.org/proposedrevision/Pages/SomaticSymptomDisorders.aspx

[5] DSM-5 Draft Proposals, Other Disorders: http://www.dsm5.org/proposedrevision/Pages/OtherDisorders.aspx


The Open Letter and Petition can be read here: http://www.ipetitions.com/petition/dsm5/

There’s also a copy on the blog of  Society for Humanistic Psychology

Sponsor

Society for Humanistic Psychology, Division 32 of the American Psychological Association, in alliance with Society for Community Research and Action: Division of Community Psychology (Division 27 of APA) and Society for Group Psychology and Psychotherapy (Division 49 of APA). We invite mental health professionals and mental health organizations to sign on in support of this petition to the DSM5 Task Force of the American Psychiatric Association

To the DSM-5 Task Force and the American Psychiatric Association:

As you are aware, the DSM is a central component of the research, education, and practice of most licensed psychologists in the United States. Psychologists are not only consumers and utilizers of the manual, but we are also producers of seminal research on DSM-defined disorder categories and their empirical correlates. Practicing psychologists in both private and public service utilize the DSM to conceptualize, communicate, and support their clinical work.

For these reasons, we believe that the development and revision of DSM diagnoses should include the contribution of psychologists, not only as select individuals on a committee, but as a professional community. We have therefore decided to offer the below response to DSM-5 development. This document was composed in recognition of, and with sensitivity to, the longstanding and congenial relationship between American psychologists and our psychiatrist colleagues.

Overview

Though we admire various efforts of the DSM-5 Task Force, especially efforts to update the manual according to new empirical research, we have substantial reservations about a number of the proposed changes that are presented on www.dsm5.org. As we will detail below, we are concerned about the lowering of diagnostic thresholds for multiple disorder categories, about the introduction of disorders that may lead to inappropriate medical treatment of vulnerable populations, and about specific proposals that appear to lack empirical grounding. In addition, we question proposed changes to the definition(s) of mental disorder that deemphasize sociocultural variation while placing more emphasis on biological theory. In light of the growing empirical evidence that neurobiology does not fully account for the emergence of mental distress, as well as new longitudinal studies revealing long-term hazards of standard neurobiological (psychotropic) treatment, we believe that these changes pose substantial risks to patients/clients, practitioners, and the mental health professions in general.

Given the changes currently taking place in the profession and science of psychiatry, as well as the developing empirical landscape from which psychiatric knowledge is drawn, we believe that it is important to make our opinions known at this particular historical moment. As stated at the conclusion of this letter, we believe that it is time for psychiatry and psychology collaboratively to explore the possibility of developing an alternative approach to the conceptualization of emotional distress. We believe that the risks posed by DSM-5, as outlined below, only highlight the need for a descriptive and empirical approach that is unencumbered by previous deductive and theoretical models.

In more detail, our response to DSM-5 is as follows:

Advances Made by the DSM-5 Task Force

We applaud certain efforts of the DSM-5 Task Force, most notably efforts to resolve the widening gap between the current manual and the growing body of scientific knowledge on psychological distress. In particular, we appreciate the efforts of the Task Force to address limitations to the validity of the current categorical system, including the high rates of comorbidity and Not Otherwise Specified (NOS) diagnoses, as well as the taxonomic failure to establish ‘zones of rarity’ between purported disorder entities (Kendell & Jablensky, 2003). We agree with the APA/DSM-5 Task Force statement that, from a systemic perspective,

The DSM-III categorical diagnoses with operational criteria were a major advance for our field, but they are now holding us back because the system has not kept up with current thinking. Clinicians complain that the current DSM-IV system poorly reflects the clinical realities of their patients. Researchers are skeptical that the existing DSM categories represent a valid basis for scientific investigations, and accumulating evidence supports this skepticism. (Schatzberg, Scully, Kupfer, & Regier, 2009)

As researchers and clinicians, we appreciate the attempt to address these problems. However, we have serious reservations about the proposed means for doing so. Again, we are concerned about the potential consequences of the new manual for patients and consumers; for psychiatrists, psychologists, and other practitioners; and for forensics, health insurance practice, and public policy. Our specific reservations are as follows:

Lowering of Diagnostic Thresholds

The proposal to lower diagnostic thresholds is scientifically premature and holds numerous risks. Diagnostic sensitivity is particularly important given the established limitations and side-effects of popular antipsychotic medications. Increasing the number of people who qualify for a diagnosis may lead to excessive medicalization and stigmatization of transitive, even normative distress. As suggested by the Chair of DSM-IV Task Force Allen Frances (2010), among others, the lowering of diagnostic thresholds poses the epidemiological risk of triggering false-positive epidemics.

We are particularly concerned about:

“Attenuated Psychosis Syndrome,” which describes experiences common in the general population, and which was developed from a “risk” concept with strikingly low predictive validity for conversion to full psychosis.

• The proposed removal of Major Depressive Disorder’s bereavement exclusion, which currently prevents the pathologization of grief, a normal life process.

• The reduction in the number of criteria necessary for the diagnosis of Attention Deficit Disorder, a diagnosis that is already subject to epidemiological inflation.

• The reduction in symptomatic duration and the number of necessary criteria for the diagnosis of Generalized Anxiety Disorder.

Though we also have faith in the perspicacity of clinicians, we believe that expertise in clinical decision-making is not ubiquitous amongst practitioners and, more importantly, cannot prevent epidemiological trends that arise from societal and institutional processes. We believe that the protection of society, including the prevention of false epidemics, should be prioritized above nomenclatural exploration.

Vulnerable Populations

We are also gravely concerned about the introduction of disorder categories that risk misuse in particularly vulnerable populations. For example, Mild Neurocognitive Disorder might be diagnosed in elderly with expected cognitive decline, especially in memory functions. Additionally, children and adolescents will be particularly susceptible to receiving a diagnosis of Disruptive Mood Dysregulation Disorder or Attenuated Psychosis Syndrome. Neither of these newly proposed disorders have a solid basis in the clinical research literature, and both may result in treatment with neuroleptics, which, as growing evidence suggests, have particularly dangerous side-effects (see below)—as well as a history of inappropriate prescriptions to vulnerable populations, such as children and the elderly

Sociocultural Variation

The DSM-5 has proposed to change the Definition of a Mental Disorder such that DSM-IV’s Feature E: “Neither deviant behavior (e.g., political, religious, or sexual) nor conflicts that are primarily between the individual and society are mental disorders unless the deviance or conflict is a symptom of a dysfunction in the individual,” will instead read “[A mental disorder is a behavioral or psychological syndrome or pattern] [t]hat is not primarily a result of social deviance or conflicts with society.” The latter version fails to explicitly state that deviant behavior and primary conflicts between the individual and society are not mental disorders. Instead, the new proposal focuses on whether mental disorder is a “result” of deviance/social conflicts. Taken literally, DSM-5’s version suggests that mental disorder may be the result of these factors so long as they are not “primarily” the cause. In other words, this change will require the clinician to draw on subjective etiological theory to make a judgment about the cause of presenting problems. It will further require the clinician to make a hierarchical decision about the primacy of these causal factors, which will then (partially) determine whether mental disorder is said to be present. Given lack of consensus as to the “primary” causes of mental distress, this proposed change may result in the labeling of sociopolitical deviance as mental disorder.

Revisions to Existing Disorder Groupings

Several new proposals with little empirical basis also warrant hesitation:

• As mentioned above, Attenuated Psychosis Syndrome and Disruptive Mood Dysregulation Disorder (DMDD) have questionable diagnostic validity, and the research on these purported disorders is relatively recent and sparse.

• The proposed overhaul of the Personality Disorders is perplexing. It appears to be a complex and idiosyncratic combined categorical-dimensional system that is only loosely based on extant scientific research. It is particularly concerning that a member of the Personality Disorders Workgroup has publicly described the proposals as “a disappointing and confusing mixture of innovation and preservation of the status quo that is inconsistent, lacks coherence, is impractical, and, in places, is incompatible with empirical facts” (Livesley, 2010), and that, similarly, Chair of DSM-III Task Force Robert Spitzer has stated that, of all of the problematic proposals, “Probably the most problematic is the revision of personality disorders, where they’ve made major changes; and the changes are not all supported by any empirical basis.”

• The Conditions Proposed by Outside Sources that are under consideration for DSM-5 contain several unsubstantiated and questionable disorder categories. For example, “Apathy Syndrome,” “Internet Addiction Disorder,” and “Parental Alienation Syndrome” have virtually no basis in the empirical literature.

New Emphasis on Medico-Physiological Theory

Advances in neuroscience, genetics, and psychophysiology have greatly enhanced our understanding of psychological distress. The neurobiological revolution has been incredibly useful in conceptualizing the conditions with which we work. Yet, even after “the decade of the brain,” not one biological marker (“biomarker”) can reliably substantiate a DSM diagnostic category. In addition, empirical studies of etiology are often inconclusive, at best pointing to a diathesis-stress model with multiple (and multifactorial) determinants and correlates. Despite this fact, proposed changes to certain DSM-5 disorder categories and to the general definition of mental disorder subtly accentuate biological theory. In the absence of compelling evidence, we are concerned that these reconceptualizations of mental disorder as primarily medical phenomena may have scientific, socioeconomic, and forensic consequences. New emphasis on biological theory can be found in the following DSM-5 proposals:

• The first of DSM-5’s proposed revisions to the Definition of a Mental Disorder transforms DSM-IV’s versatile Criterion D: “A manifestation of a behavioral, psychological, or biological dysfunction in the individual” into a newly collapsed Criterion B: [A behavioral or psychological syndrome] “That reflects an underlying psychobiological dysfunction.” The new definition states that all mental disorders represent underlying biological dysfunction. We believe that there is insufficient empirical evidence for this claim.

• The change in Criterion H under “Other Considerations” for the Definition of a Mental Disorder adds a comparison between medical disorders and mental disorders with no discussion of the differences between the two. Specifically, the qualifying phrase “No definition adequately specifies precise boundaries for the concept of ‘mental disorder” was changed to “No definition perfectly specifies precise boundaries for the concept of either ’medical disorder’ or ‘mental/psychiatric disorder’.” This effectively transforms a statement meant to clarify the conceptual limitations of mental disorder into a statement equating medical and mental phenomena.

• We are puzzled by the proposals to “De-emphasize medically unexplained symptoms” in Somatic Symptom Disorders (SSDs) and to reclassify Factitious Disorder as an SSD. The SSD Workgroup explains: “…because of the implicit mind-body dualism and the unreliability of assessments of ‘medically unexplained symptoms,’ these symptoms are no longer emphasized as core features of many of these disorders.” We do not agree that hypothesizing a medical explanation for these symptoms will resolve the philosophical problem of Cartesian dualism inherent in the concept of “mental illness.” Further, merging the medico-physical with the psychological eradicates the conceptual and historical basis for somatoform phenomena, which are by definition somatic symptoms that are not traceable to known medical conditions. Though such a redefinition may appear to lend these symptoms a solid medico-physiological foundation, we believe that the lack of empirical evidence for this foundation may lead to practitioner confusion, as might the stated comparison between these disorders and research on cancer, cardiovascular, and respiratory diseases.

• The proposed reclassification of Attention Deficit/Hyperactivity Disorder (ADHD) from Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence to the new grouping “Neurodevelopmental Disorders” seems to suggests that that ADHD has a definitive neurological basis. This change, in combination with the proposal to lower the diagnostic threshold for this category as described above, poses high risk of exacerbating the extant over-medicalization and over-diagnosis of this disorder category.

• A recent publication by the Task Force, The Conceptual Evolution of DSM-5 (Regier, Narrow, Kuhl, & Kupfer, 2011), states that the primary goal of DSM-5 is “to produce diagnostic criteria and disorder categories that keep pace with advances in neuroscience.” We believe that the primary goal of DSM-5 should be to keep pace with advances in all types of empirical knowledge (e.g., psychological, social, cultural, etc.).

Taken together, these proposed changes seem to depart from DSM’s 30-year “atheoretical” stance in favor of a pathophysiological model. This move appears to overlook growing disenchantment with strict neurobiological theories of mental disorder (e.g., “chemical imbalance” theories such as the dopamine theory of schizophrenia and the serotonin theory of depression), as well as the general failure of the neo-Kraepelinian model for validating psychiatric illness. Or in the words of the Task Force:

“…epidemiological, neurobiological, cross-cultural, and basic behavioral research conducted since DSM-IV has suggested that demonstrating construct validity for many of these strict diagnostic categories (as envisioned most notably by Robins and Guze) will remain an elusive goal” (Kendler, Kupfer, Narrow, Phillips, & Fawcett, 2009, p. 1).

We thus believe that a move towards biological theory directly contradicts evidence that psychopathology, unlike medical pathology, cannot be reduced to pathognomonic physiological signs or even multiple biomarkers. Further, growing evidence suggests that though psychotropic medications do not necessarily correct putative chemical imbalances, they do pose substantial iatrogenic hazards. For example, the increasingly popular neuroleptic (antipsychotic) medications, though helpful for many people in the short term, pose the long-term risks of obesity, diabetes, movement disorders, cognitive decline, worsening of psychotic symptoms, reduction in brain volume, and shortened lifespan (Ho, Andreasen, Ziebell, Pierson, & Magnotta, 2011; Whitaker, 2002, 2010). Indeed, though neurobiology may not fully explain the etiology of DSM-defined disorders, mounting longitudinal evidence suggests that the brain is dramatically altered over the course of psychiatric treatment.

Conclusions

In sum, we have serious reservations about the proposed content of the future DSM-5, as we believe that the new proposals pose the risk of exacerbating longstanding problems with the current system. Many of our reservations, including some of the problems described above, have already been articulated in the formal response to DSM-5 issued by the British Psychological Society (BPS, 2011) and in the email communication of the American Counseling Association (ACA) to Allen Frances (Frances, 2011b).

In light of the above-listed reservations concerning DSM-5’s proposed changes, we hereby voice agreement with BPS that:

• “…clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.”

• “The putative diagnoses presented in DSM-V are clearly based largely on social norms, with ‘symptoms’ that all rely on subjective judgments, with little confirmatory physical ‘signs’ or evidence of biological causation. The criteria are not value-free, but rather reflect current normative social expectations.”

• “… [taxonomic] systems such as this are based on identifying problems as located within individuals. This misses the relational context of problems and the undeniable social causation of many such problems.”

• There is a need for “a revision of the way mental distress is thought about, starting with recognition of the overwhelming evidence that it is on a spectrum with ‘normal’ experience” and the fact that strongly evidenced causal factors include “psychosocial factors such as poverty, unemployment and trauma.”

• An ideal empirical system for classification would not be based on past theory but rather would “ begin from the bottom up – starting with specific experiences, problems or ‘symptoms’ or ‘complaints’.”

The present DSM-5 development period may provide a unique opportunity to address these dilemmas, especially given the Task Force’s willingness to reconceptualize the general architecture of psychiatric taxonomy. However, we believe that the proposals presented on www.dsm5.org are more likely to exacerbate rather than mitigate these longstanding problems. We share BPS’s hopes for a more inductive, descriptive approach in the future, and we join BPS in offering participation and guidance in the revision process.

References

American Psychiatric Association (2011). DSM-5 Development. Retrieved from http://www.dsm5.org/Pages/Default.aspx

British Psychological Society. (2011) Response to the American Psychiatric Association: DSM-5 development.
Retrieved from http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5%202011%20-%20BPS%20response.pdf

Compton, M. T. (2008). Advances in the early detection and prevention of schizophrenia.
Medscape Psychiatry & Mental Health. Retrieved from http://www.medscape.org/viewarticle/575910

Frances, A. (2010). The first draft of DSM-V. BMJ. Retrieved from http://www.bmj.com/content/340/bmj.c1168.full

Frances, A. (2011a). DSM-5 approves new fad diagnosis for child psychiatry: Antipsychotic use
likely to rise. Psychiatric Times. Retrieved from http://www.psychiatrictimes.com/display/article/10168/1912195

Frances, A. (2011b). Who needs DSM-5? A strong warning comes from professional counselors
[Web log message]. Psychology Today. Retrieved from http://www.psychologytoday.com/blog/dsm5-in-distress/201106/who-needs-dsm-5

Hanssen, M., Bak, M., Bijl, R., Vollebergh, W., & van Os, J. (2005). The incidence and outcome of subclinical psychotic experiences in the general population. British Journal of Clinical Psychology, 44, 181-191.

Ho, B-C., Andreasen, N. C., Ziebell, S., Pierson, R., & Magnotta, V. (2011). Long-term antipsychotic treatment and brain volumes. Archives of General Psychiatry, 68, 128-137.

Johns, L. C., & van Os, J. (2001). The continuity of psychotic experiences in the general population. Clinical Psychology Review, 21, 1125-1141.

Kendell, R., & Jablensky, A. (2003). Distinguishing between the validity and utility of psychiatric diagnoses. The American Journal of Psychiatry, 160, 4-11.

Kendler, K., Kupfer, D., Narrow, W., Phillips, K., & Fawcett, J. (2009, October 21). Guidelines
for making changes to DSM-V. Retrieved August 30, 2011, from
http://www.dsm5.org/ProgressReports/Documents/Guidelines-for-Making-Changes-to-DSM_1.pdf

Livesley, W. J. (2010). Confusion and incoherence in the classification of Personality Disorder: Commentary on the preliminary proposals for DSM-5. Psychological Injury and Law, 3, 304-313.

Moran, M. (2009). DSM-V developers weigh adding psychosis risk. Psychiatric News Online.
Retrieved from http://pn.psychiatryonline.org/content/44/16/5.1.full

Regier, D. A., Narrow, W. E., Kuhl, E. A., & Kupfer, D. J. (2011). The conceptual evolution of DSM-5. Arlington, VA: American Psychiatric Publishing.

Schatzberg, A. F., Scully, J. H., Kupfer, D. J., & Regier, D. A. (2009). Setting the record straight: A response to Frances commentary on DSM-V. Psychiatric Times, 26. Retrieved from http://www.psychiatrictimes.com/dsm/content/article/10168/1425806

Whitaker, R. (2002). Mad in America. Cambridge, MA: Basic Books. Also see http://www.madinamerica.com/madinamerica.com/Schizophrenia.html

Whitaker, R. (2010). Anatomy of an epidemic. New York, NY: Random House.

New: Online ICD-10 Version for 2010

New: Online ICD-10 Version for 2010

Post #106 Shortlink: http://wp.me/pKrrB-1jm

The information in this report refers only to the existing international WHO ICD-10 and not to the forthcoming ICD-11 or to any country specific, clinical modification of ICD-10.

New: Online ICD-10 Version for 2010

I reported some months ago that according to documentation from WHO-FIC meeting materials, it was understood that a version of ICD-10 for 2010 was planned to be published online by WHO, Geneva, earlier this year.

This would replace the ICD-10 online version for 2007 and incorporate all the annual updates to ICD-10 from 2007 to 2010.

This is now up online.

A searchable version of ICD-10 for 2010 is available at this URL:

http://apps.who.int/classifications/icd10/browse/2010/en

International Statistical Classification of Diseases and Related Health Problems 10th Revision

It is presented on a platform similar to the platform being used for the ICD-11 Alpha Draft, that is, a list of ICD-10 Chapters on the left side of the screen, arranged with hierarchical parent > child categories, with the category codings set out on the right side of the screen.

This is the URL for ICD Title term G93.3 Postviral fatigue syndrome:

http://apps.who.int/classifications/icd10/browse/2010/en#/G93.3

If “Chronic fatigue syndrome” is entered into the Search box, a drop down reads:

“Syndrome – fatigue – chronic – G93.3″

(Which is the way it is set out in Volume 3 The Alphabetical Index.)

Mouse hover over the orange square on the left of the dark blue drop down and the “Alt text” reads:

“Found in Index”

There is a User Guide for ICD-10 Version: 2010 but the platform is not difficult to navigate, just select a chapter and click on the little grey arrows to display parent class and Title term categories and their child categories – you can’t break anything:

http://apps.who.int/classifications/icd10/browse/Help

Those of us with websites that have URLs pointing to specific ICD-10 version for 2007 categories will need to adjust URLs for the new platform, as code specific URLs are pointing only to the ICD-10 Version: 2010 opening page, for example:

what displayed in ICD-10 version for 2007 at this path:

http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

would need updating to:

http://apps.who.int/classifications/icd10/browse/2010/en#/G93.3

and the Chapter V entry for the F40-48 categories:

http://www.who.int/classifications/apps/icd/icd10online/?gf40.htm+f480

would need updating to:

http://apps.who.int/classifications/icd10/browse/2010/en#/F40-F48

or

http://apps.who.int/classifications/icd10/browse/2010/en#/F45.0

to point to F45 Somatoform Disorders

or

http://apps.who.int/classifications/icd10/browse/2010/en#/F48.0

to point to F48.0 Neurasthenia.

Compiled by Suzy Chapman


Medical Classification WHO ICD codes by Mary Schweitzer

Medical Classification WHO ICD codes by Mary Schweitzter

Post #105 Shortlink: http://wp.me/pKrrB-1j9

Mary Schweitzer

October 14, 2011

There has of late been speculation that it would be bad for U.S. patients if CFS and M.E. were placed in the same category in the neurology chapter of ICD-10-CM, the “clinical manual” of ICD-10 that will be adopted for use in the United States.

But the fact of the matter is that in ICD-10, CFS already IS coded to G93.3, “PVFS and M.E.” in the index, which is as authoritative as the tabular version. [PVFS stands for Post-Viral Fatigue Syndrome, and is not diagnosed very frequently any more - not at all in the U.S.]. It already IS coded in neurology.

110 nations use ICD-10 as-is, including the UK. Australia has a clinical version that does not alter the codes for M.E. or CFS. But Canada and Germany have clinical versions that place CFS in the tabular version of ICD-10, in G93.3 with M.E. In fact, it was the Canadian clinical version, ICD-10-CA, which led to the highly regarded Canadian Consensus Criteria for ME/CFS in 2003.

NOBODY EXCEPT THE UNITED STATES CODES CFS IN THE “R” CHAPTER. If we coded CFS at R53.82, which was the plan of NCHS, we would have been the ONLY nation in the world to do so.

Furthermore, M.E. is not a known diagnosis in the U.S. (WE know about it, but very few doctors do.) There is no definition for it approved by CDC. We can now point to the new definition that was published in the Journal of Internal Medicine, but that is more likely to enable researchers in the US and Canada to use M.E. if they want to, than to trickle down to U.S. clinicians [1]. Part of the problem is that when M.E. replaced atypical polio as a disease name in British commonwealth nations and Europe, in the U.S. the new name was epidemic neuromyesthenia, which has not (to my knowledge) been diagnosed in decades.

So if CFS gets coded as R53.82 in the U.S.’s ICD-10-CM, yes, M.E. will be less likely to confuse with CFS – but that would only be in the U.S., and in the U.S. we only get diagnosed with that revolting name CFS anyway. At least we could get them scratching their heads and asking, “What is M.E.?” if both diseases were placed together where those of you outside the U.S. already have it.

Given that U.S. doctors do not have a high opinion of CFS, keeping it under “R” in “vague signs and symptoms” would only reinforce their prejudice against it as a “garbage diagnosis” – something you diagnose when you run out of ideas.

Finally, there was an inadvertent error in an earlier Co-Cure message about getting CFS out of the “R” category. The “R” category is not for psychiatric diagnoses.

British psychiatrists use “fatigue syndrome,” which is coded at F48.0 under neuroses at “neurasthenia.”. Then when they write about it, they mix and match terms so it looks as if CFS is the same thing, and therefore it goes in F48.0. That is a serious problem in the UK. [I have to admit to being alarmed recently when a U.S. virologist connected CFS not to the history of atypical polio, which is pretty well established, but to the arcane nineteenth century diagnosis of neurasthenia. Please don't do that!]

We are not (I hope) in current danger of being coded under neuroses at F48.0, neurasthenia, in the U.S. But the “R” diagnosis is sufficiently vague that it wouldn’t be difficult to use it to claim CFS patients really have CSSD (Complex Somatic Symptom Disorder), the category British psychiatrist and CBT advocate Michael Sharpe is trying to shoehorn into DSM-5, the new version of the American Psychiatric Association’s huge diagnostic tome. So it does leave us vulnerable [2].

To those outside the U.S. I would say, look to ICD-11. That’s what will affect you the most. To those in the U.S. (where we are finally getting around to adopting ICD-10-CM two decades after ICD-10 was written), what WE need is simply to get in step with the rest of the world now.

Mary M. Schweitzer PhD

Related material

[1] New International Consensus Criteria for M.E., Journal of Internal Medicine

Volume 270, Issue 4, pages 327–338, October 2011

Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C. P., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., Marshall-Gradisbik, S., Mena, I., Mikovits, J. A., Miwa, K., Murovska, M., Pall, M. L. and Stevens, S. (2011), Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270: 327–338. doi: 10.1111/j.1365-2796.2011.02428.x

Abstract
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

Full text in html
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Full text in PDF
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

Or Open PDF here:  International ME Consensus Criteria

[2] DSM-5 Development: Somatic Symptom Disorders

http://www.dsm5.org/proposedrevision/Pages/SomaticSymptomDisorders.aspx

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary document (CFS coding)

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary of Diagnosis Presentations September 14, 2011 (CFS Coding)

Post #104 Shortlink: http://wp.me/pKrrB-1iN

You can download an Audio of the September 14 NCHS meeting here: http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[Note this is a large Zipped file.  The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]

Summary of Volumes 1 and 2, Diagnosis Presentations
September 14, 2011

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

Donna Pickett, co-chair of the committee, welcomed the members of the audience to the diagnosis portion of the meeting. She reviewed the timeline included at the beginning of the topic packet informing the attendees of the deadline for written comments on topics presented at this meeting. All diagnosis topics presented during the meeting are being considered for October 1, 2013 implementation.

Written comments must be received by NCHS staff by November 18, 2011. Ms. Pickett requested that comments be sent via electronic mail to the following email address nchsicd9CM@cdc.gov since regular mail is often delayed. Contact information for all NCHS staff and the NCHS website are included in the topic packet. Attendees were also reminded that the full topic packet is currently posted on the NCHS website.

[...]

Page 2

Comments and discussion on the topics presented on September 14, 2011 were as follows:

Chronic Fatigue Syndrome

Mary Dimmock representing the Coalition 4 ME/CFS gave a presentation on the Coalition’s understanding of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) as well as their proposal. They presented additional options for coding of these two diagnoses. NCHS responded that since they were not aware of this additional option, until today’s meeting, the proposal would remain with the two options offered (one from NCHS and one from the requestor).

There were many comments from the audience including the following:

There was general support for NCHS proposed option 2, moving CFS to ICD-10-CM Chapter 6, Diseases of the Nervous System but retaining separate codes for CFS vs. ME. Reasons given for retaining separate codes included agreement that it is important to retain ability to do data extraction on the two conditions separately vs. combining them if desired. In addition, the CFS may not always be able to be identified as postviral.

Though the requestor had asked to have the term “benign” deleted from inclusion term “benign myalgic encephalomyelitis,” NCHS indicated it should remain somewhere at G93.3 to maintain compatibility with WHO ICD-10. Comments on this indicated that it should be added to proposed new code G93.31 with benign as a nonessential modifier.

[Ed: It was suggested at the meeting that the modifier "Benign" might appear in parentheses at the end of  "Myalgic encephalomyelitis".]

It was recommended to change the excludes2 note, at proposed new code G93.32, to an exludes1 since it is not likely that one would have both chronic fatigue syndrome and a chronic fatigue, NOS from some other condition. There is no need to code chronic fatigue NOS separate from the CFS.

There was a general question asked about how this request can be considered for October 1, 2012 since it is not a new disease. There was also general support that if the change is approved to move CFS from Chapter 18, code R53.82, to a code within Chapter 6 it should occur in time for the October 1, 2013 implementation of ICD-10-CM.

There was general agreement, by those in the audience, that the term “myalgic encephalomyelitis” is not seen in medical records.

One commenter, representing Coalition4 ME/CFS indicated that ME and CFS should not be separated since it goes against the definition of the 2011 ME ICC (an international committee). Her opinion was that treatment is the same for both conditions, literature refers to ME and CFS together, and that the U.S. is behind the international recognition of these two conditions being the same.

[...]

The audience was asked to carefully review the proposals following the meeting and to submit written comments by the November 18, 2011 deadline.

[Extract ends]

Comments on proposals need to be submitted by November 18.

Comments from stakeholders, preferably via email, should be submitted to:

Donna Pickett RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics – CDC
3311Toledo Road Hyattsville, MD 20782
Via email: nchsicd9CM@cdc.gov

Related material:

1] Full NCHS meeting Proposals document:

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

2] Full NCHS meeting Summary document:

http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

3] Post: Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

4] Post: Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

Extracts from Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

Post #103 Shortlink: http://wp.me/pKrrB-1iB

You can download an Audio of the September 14 NCHS meeting here:  http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[Note this is a large Zipped file.  The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]

Extracts from Diagnosis Agenda

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

Page 8

Partial Code Freeze for ICD-9-CM and ICD-10

The ICD-9-CM Coordination and Maintenance Committee will implement a partial freeze of the ICD-9-CM and ICD-10 (ICD-10-CM and ICD-10-PCS) codes prior to the implementation of ICD-10 on October 1, 2013. There was considerable support for this partial freeze. The partial freeze will be implemented as follows:

• The last regular, annual updates to both ICD-9-CM and ICD-10 code sets will be made on October 1, 2011.
• On October 1, 2012, there will be only limited code updates to both the ICD-9-CM and ICD-10 code sets to capture new technologies and diseases as required by section 503(a) of Pub. L. 108-173.
• On October 1, 2013, there will be only limited code updates to ICD-10 code sets to capture new technologies and diagnoses as required by section 503(a) of Pub. L. 108-173. There will be no updates to ICD-9-CM, as it will no longer be used for reporting.
• On October 1, 2014, regular updates to ICD-10 will begin.

The ICD-9-CM Coordination and Maintenance Committee will continue to meet twice a year during the partial freeze. At these meetings, the public will be asked to comment on whether or not requests for new diagnosis or procedure codes should be created based on the criteria of the need to capture a new technology or disease. Any code requests that do not meet the criteria will be evaluated for implementation within ICD-10 on and after October 1, 2014 once the partial freeze has ended.

Codes discussed at the September 15 – 16, 2010 and March 9 – 10, 2011 ICD-9-CM Coordination and Maintenance Committee meeting will be considered for implementation on October 1, 2011, the last regular updates for ICD-9-CM and ICD-10. Code requests discussed at the September 14 – 15, 2011 and additional meetings during the freeze will be evaluated for either the limited updates to capture new technologies and diseases during the freeze period or for implementation to ICD-10 on October 1, 2014. The public will be actively involved in discussing the merits of any such requests during the period of the partial freeze.

Page 10 and 11

ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011

10 Chronic Fatigue Syndrome

According to the Coalition 4 ME/CFS, US researchers have estimated that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) strikes 1 to 4 million Americans. It is a devastating illness that is characterized by profound fatigue that is not improved by rest and is worsened by physical or mental activity, along with multi-system symptoms including pain, cognitive impairment, headaches, unrefreshing sleep and tender lymph nodes.

In ICD-9-CM, the code for Chronic Fatigue Syndrome (CFS) (780.71, Chronic Fatigue Syndrome) became effective October 1, 1998. The proposal to create a unique code was presented at the December 1997 ICD-9-CM Coordination and Maintenance meeting and was based on a number of requests that stated that a unique code was needed because it was impossible to collect meaningful data about the frequency of diagnosis as well as the utilization of medical services. Placement of CFS within Chapter 16 in ICD-9-CM at that time reflected that an underlying cause had not yet been determined.

The cause or causes of CFS remain unknown, despite a vigorous search. While a single cause for CFS may yet be identified, another possibility is that CFS represents a common endpoint of disease resulting from multiple causes. Conditions that have been proposed to trigger the development of CFS include infections, traumatic conditions, immune dysfunction, stress, and toxins.

Currently there are several case definitions in use, some separating CFS from myalgic encephalomyelitis (ME), and others merging the two conditions together. The most widely used are the 1994 case definition, the Canadian and the Oxford definitions. A new definition of ME has been recently published to emphasize recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology. While there is no consensus on case definition, there is consensus that this is a serious syndrome and complex syndrome, and it is likely that there are multiple subgroups. Changes in immune, CNS and autonomic nervous system can be identified, but no tests have sufficient sensitivity and specificity to serve as a diagnostic test for CFS.

ICD-10 was approved by the International Conference for the Tenth Revision of the International Classification of Diseases in 1989 and adopted by the 43rd World Health Assembly in 1990. In ICD-10 WHO created code G93.3, Postviral fatigue syndrome and indexed chronic fatigue syndrome to this code. In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.

The Coalition 4 ME/CFS has submitted a proposal asking that chronic fatigue syndrome be deleted as an inclusion term under code R53.82 and that the term be added as an inclusion term under code G93.3.

The Coalition 4 ME/CFS is also requesting that their proposal be considered for October 1, 2012 so that the change occurs prior to the October 1, 2013 implementation date of ICD-10-CM even though the condition is not a new disease.

Page 11

Ed: Note that Option 1 (Proposal by the Coalition4ME/CFS) does not display the term Benign myalgic encephalomyelitis under G93.3 Postviral fatigue syndrome. This is because no change to the placement of this term is being requested by the Coalition4ME/CFS, that is, no request to Add, Delete or Revise the term is being requested.

[Extract ends]

Ed: Note that discussion of whether class 1 excludes were more appropriate than class 2 excludes took place at the meeting.

ICD: Use of Excludes1 or Excludes2

https://www.cms.gov/ICD10/Downloads/6_I10tab2010.pdf

ICD-10-CM TABULAR LIST of DISEASES and INJURIES

Instructional Notations

[...]

Excludes Notes

The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.

Excludes1

A type 1 Excludes note is a pure excludes. It means “NOT CODED HERE!” An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is for used for when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.

Excludes2

A type 2 excludes note represents “Not included here”. An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together.

Related material:

1] Full NCHS meeting Proposals document:

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

2] Post: Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

3] Post: Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

Post #102 Shortlink: http://wp.me/pKrrB-1hd

Coalition4ME/CFS initiative

ICD-10-CM

 

CFSAC discusses ICD-10-CM coding concerns

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 (DHHS) on issues related to chronic fatigue syndrome (CFS).

Go here for the current Roster of Voting and Ex Officio committee members.

CFSAC holds twice yearly public meetings and meeting Agendas, Minutes, Meeting Materials, Presentations, Public Testimonies, Meeting Videocasts and CFSAC’s Recommendations to the DHHS are published on the CFSAC website.

The National Center for Health Statistics (NCHS), the Federal agency responsible for use of the WHO’s International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10) in the United States, has developed a clinical modification of the classification for morbidity purposes. The ICD-10 is used to code and classify mortality data from death certificates, having replaced ICD-9 for this purpose as of January 1, 1999.

The WHO has authorized the development of an adaptation of ICD-10 for use in the United States for U.S. government purposes. Although a U.S. specific adaptation, with U.S. committees and technical advisory panels responsible for its development and oversight, all modifications to the ICD-10 must conform to WHO ICD conventions.

ICD-10-CM is planned as the replacement for ICD-9-CM, volumes 1 and 2.

U.S. lags behind

While much of the world has been using the ICD-10 for many years and is looking to move onto ICD-11 (currently  scheduled for implementation in 2015), the U.S. has been slow to make the transition from ICD-9-CM to a “clinical modification” of ICD-10.

ICD-10-CM development has been a long drawn out process and ICD-10-CM isn’t scheduled for implementation until October 1, 2013.

So when U.S. coders, clinicians, medical insurers and reimbursers are adapting to using ICD-10-CM, much of the rest of the world will be gearing up for ICD-11, which is planned to be a significantly different product to ICD-10, in terms of its structure, content, presentation, accessibility and its capacity, as an electronic publication, for continuous update and revision.

 

CFSAC new Recommendation to HHS

At the last CFSAC meeting (May 10-11, 2011), an hour long slot had been tabled on the agenda for Day One for discussion of concerns around the NCHS’s current proposals for the coding of CFS within ICD-10-CM.

The Committee was also informed of the considerable concerns for the implications for CFS and ME patients of the draft criteria and new categories being proposed by the DSM-5 “Somatic Symptom Disorders” work group.

A new CFSAC Recommendation to HHS was proposed by Committee member, Dr Lenny Jason, seconded by Dr Nancy Klimas, and voted unanimously in favour of by the Committee [1].

This new Recommendation, set out below, restates and expands on the Recommendation that CFSAC had made to HHS, in August 2005.

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS. 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 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)     Source: CFSAC Recommendations – May 10-11, 2011

 

What are the current proposals?

For ICD-10-CM, the current proposals for the classification of PVFS and ME are:

that Postviral fatigue syndrome would be classified within Chapter 6 Diseases of the nervous system under the parent class “G93 Other disorders of brain”, coded at G93.3.

(Benign) Myalgic encephalomyelitis would be classified as an Inclusion term under Title category “G93.3 Postviral fatigue syndrome”.

This is in keeping with the international ICD-10, from which ICD-10-CM has been developed. See Footnote [4] for link to page setting out current proposals for ICD-10-CM.

In ICD-10, Chronic fatigue syndrome is indexed to G93.3 in Volume 3 The Alphabetical Index. 

In ICD-10-CA, the Canadian Clinical Modification of ICD-10, Chronic fatigue syndrome is classified in the Tabular List in Chapter 6, under “G93.3 Postviral fatigue syndrome”.

For ICD-11, the proposal is that all three terms should be classified within Chapter 6.

But for ICD-10-CM, instead of coding Chronic fatigue syndrome to G93.3, the proposal is  to retain Chronic fatigue syndrome in the R codes chapter (which is Chapter 16 in ICD-9-CM and will be Chapter 18 in ICD-10-CM), where it would be coded thus:

Chapter 18  (Symptoms and signs and ill defined conditions)

[...]

R53.8 Other malaise and fatigue

R53 Malaise and fatigue

R53.82 Chronic fatigue, unspecified
              Chronic fatigue syndrome (NOS)

Excludes1: postviral fatigue syndrome (G93.3)

(In ICD, NOS stands for “Not Otherwise Specified”.)

 

What is NCHS’s rationale for retaining CFS as (CFS NOS) in the R code chapter?

According to the background document Dr Wanda Jones presented to the Committee:

As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82).

If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.

There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward.

Source: Extract: ICD-related questions from CFSAC for May 2011 meeting

 
Dr. Jones clarified for the Committee that if, in the clinician’s judgment, it was considered there is enough evidence to attribute the patient’s illness to a viral illness onset then the clinician could code to G93.3 (Postviral fatigue syndrome). If “however they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes.” [1]
 
It has been further confirmed that testing for a viral illness is not required to assign a code – that coding is based on the clinician’s judgment.
 
And from the NCHS September 14 meeting Proposals document:
In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.
 

Is this a new proposal?

No. This is a long-standing proposal that had been known about since at least 2007. It has been discussed on forums and raised in mailings on the Co-Cure Listserv list in 2007 and 2008 by U.S. advocates Mary Schweitzer and Jean Harrison, and flagged up by others in the U.S. and elsewhere, in the last couple of years.

The proposed coding of CFS, PVFS and (B) ME in the forthcoming ICD-10-CM had already been discussed at public CFSAC meetings in June 2004, when the NCHS’s, Donna Pickett, had given a presentation and again in September 2004, January 2005 and May 2010.

So the proposed coding of PVFS, (B) ME and CFS for ICD-10-CM is by no means a new issue.

As noted, ICD-10-CM has been under development for many years. A public comment period ran from December 1997 through February 1998. In 2001, the proposal had been that all three terms should be coded to G93.3, in keeping with the placement in the WHO’s ICD-10 [2].

I am advised that at one point, all three terms: PVFS, (B) ME and CFS, were proposed to be coded under G93.3, with a “CFS NOS” retained in the R codes. But that subsequently, the placement of CFS in Chapter 6 under the G93 parent class was deleted, leaving “CFS NOS” orphaned, in Chapter 18.

 

What is the ICD “R code” chapter for?

There is a four page ICD-11 Discussion Document that is worth a read: Signs and Symptoms [Considerations for handling categories and concepts currently found in chapter 18 of ICD-10, “SYMPTOMS, SIGNS AND ABNORMAL CLINICAL AND
LABORATORY FINDINGS NOT ELSEWHERE CLASSIFIED”, (R-codes), authors: Aymé, Chalmers, Chute, Jakob.] Open here: Discussion: Signs and Symptoms (Chapter 18)

The R codes chapter is the ICD chapter for “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)”

“This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill defined conditions regarding which no diagnosis classifiable elsewhere is recorded.” Source: ICD-10-CM Chapter 18, 2011 release.

 

Dustbin Diagnosis

At the May CFSAC meeting, Committee member, Steven Krafchick, a medical and disability attorney, raised his considerable concerns for the legal and medical insurance ramifications of coding CFS under the “R codes” at the May CFSAC meeting [1]. 

Coding CFS under R53.82 for “non viral onset” cases will consign patients to a dustbin diagnosis that will continue to confuse and conflate Chronic fatigue syndrome with Chronic fatigue. There are no certainties that clinicians will code new cases using the unfamiliar G93.3 PVFS and ME codes or that existing CFS patients will get “upgraded” to G93.3 ME.

Coding CFS under R53.82 under ill defined conditions will make patients more vulnerable to the proposals of the APA’s DSM-5 “Somatic Symptom Disorders” Work Group.

Coding CFS under R53.82 will render ICD-10-CM out of line with at least four versions of ICD-10, including Canada’s ICD-10-CA, which has all three terms classified in the Tabular List under G93.3, and out of line with proposals for the forthcoming ICD-11, scheduled for implementation in 2015. The U.S. would be the only country with CFS coded in the R codes.

 

ICD-10-CM CFS CF

 

Have representations been made to the NCHS Committee?

Although representations around the coding of CFS for ICD-10-CM have been made to CDC over the years, no stakeholder representations at NCHS meetings are recorded.

At the May CFSAC meeting, Dr Jones informed the Committee that the ICD-CM process is a public process and that there is an opportunity to input into the update of ICD-9-CM and development of ICD-10-CM as part of that process, and to engage with the NCHS Committee via regularly scheduled public meetings. Dr Jones confirmed that NCHS has stated that there has been no public presence from the CFS community at these meetings.
 
It was established during the May meeting that the deadline for submitting representations for new inclusions or modifications to existing proposals for ICD-10-CM for tabling for discussion at the next NCHS Coordination and Maintenance Committee meeting would close on July 15, for a meeting scheduled for September 14. It was further noted this would be the last meeting before implementation of the partial code freeze and that this was therefore a time sensitive issue.
 
Committee members discussed the potential for a representative of CFSAC attending the September 14 ICD-9-CM Coordination and Maintenance Committee meeting if it were permissible for CFSAC to give public testimony to another advisory body; Dr Jones stated that she would check the rules. Medical attorney, Steven Krafchick, had been particularly keen to see this suggestion taken forward.

 

Coalition4ME/CFS initiative

In a Press Release dated September 12, 2011, the Coalition4ME/CFS, which comprises a number of US 501 (c)(3) registered ME and CFS organizations, announced that the Coalition had submitted a representation to NCHS in July.

The Coalition had set out its proposals and a rationale in a 48 page letter dated July 14 and had been successful in getting the issue of the proposed coding of CFS in ICD-10-CM placed on the agenda for the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee. 

Mary Dimmock and Marly Silverman attended the September meeting and presented the Coalition’s proposal and rationale to the NCHS. The NCHS presented an alternative suggestion to the current proposal for the coding of CFS in ICD-10-CM on which stakeholders may also wish to submit comment.

The Coalition4ME/CFS’s materials can be found here:

 

http://coalition4mecfs.org/ICDPR.html

There are a quite a number of background documents on the Coalition’s site and you may want to start with the Coalition’s Summary and Overview document.

You’ll also find the Coalition’s Press Release, ICD FAQ, Coalition Proposal, ICD Presentation (PPT), ME-ICC Update, ICD Meeting Update, IACFS Conference info and an ICD Sample Letter (a template for submitting comment to NCHS in support of the Coalition’s proposals).

 

What is the Coalition4ME/CFS proposing?

The Coalition proposes that for ICD-10-CM, Chronic fatigue syndrome (currently coded as “Chronic fatigue syndrome NOS”) should be deleted from Chapter 18: R53.82 Malaise and fatigue and instead, classified within Chapter 6 Diseases of the nervous system under the parent class G93 Other diseases of brain, under the Title term G93.3 Postviral fatigue syndrome, under which code Benign myalgic encephalomyelitis is proposed to be classified.

 This would bring the US specific ICD-10-CM in line with international ICD-10 (in which CFS is indexed to G93.3) and ICD-10-CA (Canada), where all three terms are classsified within the ICD-10-CA Tabular List under G93.3.

This would reflect the CFSAC Committee’s Recommendation to HHS of May 2011 which had prompted the Coalition’s initiative.

This would bring ICD-10-CM in line with ICD-11, for which it is proposed that all three terms are classified in Chapter 6 Diseases of the nervous system.

I shall be setting out the various proposals in a forthcoming post.

 

September 14 Coordination and Maintenance Committee meeting

The CDC webpage for the development of ICD-10-CM is here: http://www.cdc.gov/nchs/icd/icd10cm.htm

The 2011 release for the draft ICD-10-CM is available from the page above under this section of the page. Note that although this release of ICD-10-CM is available for public viewing, the codes in ICD-10-CM are not currently valid for any purpose or use. The most recent update to the draft, the “2011 release of ICD-10-CM” replaces the December 2010 release.

The CDC webpage for the ICD-9-CM Coordination and Maintenance Committee remit, meeting schedules and meeting documentation is here: http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

The ICD-9-CM Coordination and Maintenance Committee is a Federal Committee; suggestions for new inclusions to ICD-9-CM and modifications to proposals for the forthcoming ICD-10-CM come from both the public and private sectors.  Interested parties and stakeholders are required to submit proposals for modification prior to a scheduled meeting.

These twice yearly meetings are held as public fora to discuss proposed modifications to ICD-9-CM and proposals for ICD-10-CM and a number of proposals and modifications around other diseases and disorders had been tabled for discussion on September 14, in addition to the issue of the coding of CFS in ICD-10-CM.

Meeting presentation

Mary Dimmock (who prepared the proposal) and Marly Silverman (PANDORA founder and Coalition4ME/CFS steering committee member) presented on behalf of the Coalition at the NCHS’s September 14 meeting.

At the meeting, the NCHS had presented an alternative suggestion to the current proposal for the coding of CFS in ICD-10-CM which suggested coding (B) ME and CFS under two separate sub codes (G93.31 and G93.32) under a revised G93.3 parent “G93.3 Postviral and other chronic fatigue syndromes” (a not entirely satisfactory suggestion that I shall set out in full in a forthcoming post). I shall be posting extracts from the two NCHS meeting Proposals and Summary documents where they relate to the issue of the coding of CFS in the next post, and you can download the entire documents from the links below.

 
You can download an Audio of the September 14 NCHS meeting here: http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[Note this is a large Zipped file.  The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]

The NCHS Committee’s Summary of the proceedings of this meeting can be downloaded here: Summary September 14, 2011. See Page 2.

The CDC site says, “Note: This document was re-posted, changes are on page 2, bullet 2, bolded.  If you downloaded the previous document you will need to download this updated document.”

The NCHS Committee’s Proposals document is here:  Proposals September 14, 2011. See Pages 10-11.

The CDC site says, “Note: This document was re-posted, if you downloaded the previous document you will need to download this updated document.”

 

What’s the deadline for comments and where do I send them?

The closing date for submitting comments to NCHS on the proposals is Friday, November 18.

Comments from stakeholders, preferably via email, should be submitted to:

Donna Pickett RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics – CDC
3311Toledo Road Hyattsville, MD 20782
Via email: nchsicd9CM@cdc.gov

 

Coming up…

In upcoming posts I’ll be setting out the various proposals and the NCHS’s suggestion, for ease of comparison, and a posting by Mary Schweitzer around ICD-10-CM.

 

Footnotes and related postings:

1] Minutes of May 10-11 2011 CFSAC meeting (Extract: Discussion of concerns re coding of CFS for ICD-10-CM)

2]  A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases CDC, 2001.

3] CFS orphaned in the “R” codes in US specific ICD-10-CM

4] Forthcoming US “Clinical Modification” ICD-10-CM (starts half way down page)

5] I have written to the CDC’s, Donna Pickett, to request that consideration is given to posting stand alone PDFs of the draft Tabular List and Index. (At the moment, these two documents require extraction or opening in situ from a 14 MB Zipped file which contains five PDFs, which include the ICD-10-CM Tabular List and the Alphabetical Index.)

To view or download the Tabular List and Alphabetical Index for the 2011 release of ICD-10-CM:

Go to: http://www.cdc.gov/nchs/icd/icd10cm.htm#10update

Heading: ICD-10-CM Files – 2011 release

Click on: ICD-10-CM PDF Format for which the URL is

ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/2011/

Open or save this directory file:

12/20/2010 08:40AM    14,131,267    icd10_cm_pdf.zip

contains 5 PDF files, which include the Tabular List (7.8 MB) and the Alphabetical Index (4.7 MB) which can be viewed in situ or saved to hard drive.

Next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

Next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

Post #101 Shortlink: http://wp.me/pKrrB-1gZ

Update @ October 19, 2011

An expanded version of the email I received from Mr Emmett Nixon on October 14 has now been posted on the CFSAC site at http://www.hhs.gov/advcomcfs/notices/n101811.html which includes the following:

“We will provide a video recording of the meeting on the CFSAC webpage, http://www.hhs.gov/advcomcfs, which will be posted within one week of the meeting. This recording will be compliant with Section 508 of the Rehabilitation Act and will include captions.”

**********************************************************************************************

Fall CFSAC meeting

The Federal Notice announcing dates for the Fall Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting was issued on October 5, 2011 and can be read here Federal Notice. At the time of publishing, an agenda for this meeting has yet to be released. I will update when the agenda has been published.

Custom TinyURL: http://tinyurl.com/November2011CFSAC

The two day meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011 at a new venue - the Holiday Inn Capitol, Columbia Room, 550 C Street, SW., Washington, DC.

Since May 2009, the entire meeting proceedings have been streamed as live video with videocasts posted online a few days after the meeting has closed. For the November meeting, CFSAC has stated that only a live audio feed will be provided rather than real-time visuals and auto subtitling and that a high quality video will be provided at a later date.

The Federal Notice can be read below and beneath that, a clarification received on October 14, from Mr Emmett Nixon (HHS/OAHS), CFSAC Support Team.

Meeting of the Chronic Fatigue Syndrome Advisory Committee

A Notice by the Health and Human Services Department on 10/05/2011

Summary

As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

Table of Contents

DATES:
ADDRESSES:
FOR FURTHER INFORMATION CONTACT:
SUPPLEMENTARY INFORMATION:

DATES:

The meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011. The meeting will be held from 9 a.m. to 5 p.m. on November 8, 2011, and 9 a.m. to 4:30 p.m. on November 9, 2011.

ADDRESSES:

Holiday Inn Capitol; Columbia Room; 550 C Street, SW., Washington, DC 20024; Hotel (202-479-4000).

FOR FURTHER INFORMATION CONTACT:

Nancy C. Lee, MD; Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to cfsac@hhs.gov .

SUPPLEMENTARY INFORMATION:

CFSAC was established on September 5, 2002. The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve the quality of life of CFS patients.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs , when it is finalized. The meeting will be recorded and archived for on-demand viewing through the CFSAC Web site. It will be available by audio on both days and the call-in numbers will be posted on the CFSAC Web site.

Public attendance at the meeting is open. Those attending the meeting will need to sign-in prior to entering the meeting room. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at cfsac@hhs.gov in advance.

Members of the public will have the opportunity to provide oral testimony on both days of the meeting; pre-registration for oral testimony is required. Individuals who wish to address the Committee during the public comment session must pre-register by Wednesday, October 26, 2011, via e-mail to cfsac@hhs.gov. Time slots for public comment will be available on a first-come, first-served basis and will be limited to five minutes per speaker; no exceptions will be made. Priority will be given to individuals who have not presented public comment at previous CFSAC meetings. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov, prior to the close of business on Wednesday, October 26, 2011. If you wish to remain anonymous, please notify the CFSAC support team staff upon submission of your materials to cfsac@hhs.gov.

If you do not submit your written testimony by the close of business Wednesday, October 26, 2011, you may bring a copy to the meeting and present it to a CFSAC support team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.

Individuals who do not provide public comment at the meeting, but who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Designated Federal Officer at cfsac@hhs.gov prior to close of business on Wednesday, October 26, 2011. Submitted documents should be limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team staff upon submitting your materials to cfsac@hhs.gov .

All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC Web site; this material will be made available for public inspection. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other personal identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.

Dated: September 30, 2011.

Nancy C. Lee,

Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee.

[FR Doc. 2011-25739 Filed 10-4-11; 8:45 am]

On October 14, I received the following clarifications from Mr Emmett Nixon, (HHS/OAHS) CFSAC Support Team, in response to queries first raised with Dr Nancy Lee, on October 11, concerning the arrangements for the recording and streaming of this meeting and the rationale behind the change of venue.

Mr Nixon’s response (October 14, 2011):

“We have heard concerns about changes we have made in the venue and the format of the upcoming 2011 November Chronic Fatigue Syndrome Advisory Committee meeting. Below we provide additional details about the meeting.

“We are working diligently to address major shifts in budget restrictions and protecting the personal safety of the public attending the meeting. We have moved the Fall CFSAC meeting to the Holiday Inn 550 C. St. SW, Columbia Room, Washington, D.C. 20024. This change was made because the HHS Humphrey Building Room 800 cannot accommodate more than 50 persons, and we are required to escort all persons attending the meeting due to security measures in place. The Columbia room at the Holiday inn holds a maximum of 300 people and provides an opportunity for the public to move freely about the hotel, rest in their rooms and use open hotel areas including the hotel cafeteria and restaurant. HHS will continue to provide a quiet area in the rear of the Columbia room to accommodate those needing a place to rest. HHS will not provide any medical services.

“There will be a live audio link to the two day meeting, which allows listeners to hear the entire meeting in real time. Due to budgetary considerations, we are unable to provide a live-video cast as previously arranged. We will provide a video recording of the meeting on the CFSAC webpage http://www.hhs.gov/advcomcfs/ . This recording will provide a higher quality video at substantially lower cost.

“Time slots for public testimony will be available on a first-come, first-served basis and limited to five minutes per speaker. Priority will be given to individuals who have not given public testimony in previous meetings. Three hours have been allotted for public testimony. As before, we will accommodate persons who want to provide their testimony by telephone.

“The CFSAC Support Team”

On October 17, I wrote again to Mr Nixon, CC Dr Nancy Lee and Dr Chris Snell, Chair, CFSAC Committee, requesting that the decision not to provide live video streaming be reviewed, citing the issue of accessability to a public meeting by a patient group with disabilities, sensory processing difficulties and cognitive impairment and that a precedent had been set in May 2009 when video streaming was introduced for these meetings, which are viewed live not just in the US, but internationally.

In raising this issue with CFSAC Support Team, I have presented my concerns as an individual and have no connection with any other initiatives or approaches that might be being made to the Committee in respect of similar concerns over the arrangements for this November meeting.

Related material

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)