Important changes to DSM-5 Development website: Draft proposals and criteria removed

Important changes to DSM-5 Development website: Draft proposals and criteria removed

Post #208 Shortlink: http://wp.me/pKrrB-2wk

Update: November 16: Webpages on the DSM-5 Development site that were no longer accessible, yesterday, via the home page or a Proposals tab menu but were still accessible via their URLs have today been placed behind a log  in.

Following closure of the third and final DSM-5 stakeholder review, revisions made by the 13 Work Groups and Task Force to proposals and criteria for DSM-5 subsequent to June 15 are subject to embargo.

You can read the DSM-5 Permissions Policy here  (Updated: 5/30/2012).

The DSM-5 Development site Terms and Conditions of Use can be read here (Effective Date: June 21, 20120).

The Terms and Conditions of Use page has not been updated to reflect very recent changes to the website.

+++

Removal of proposals for DSM-5 categories and criteria

I have a webpage change detection service set up for the home page and selected pages of the DSM-5 Development site.

Today, November 15, I was notified that the DSM-5 Development home page text has been recently edited.

The home page text has been revised and the 20 links towards the foot of the home page text to Proposed Revisions have been removed, as has the drop-down tab menu for Proposed Revisions, Rationales, Severity Specifiers for the 20 DSM-5 category sections.

The revised home text can be read here.

The home page text as it had stood prior to recent editing can be reviewed (for a while) on this Google cache page.

[…Google’s cache of http://www.dsm5.org/ . It is a snapshot of the page as it appeared on 4 Nov 2012 21:50:47 GMT…]

The DSM manual and its clinical and research criteria sets are a major cash cow for the publishing arm of the APA.

APA is protecting its intellectual property rights by removing draft criteria as they had stood at June 15, 2012 and in placing an embargo on interim revisions to the texts, prior to publication of the final categories, criteria sets and associated textual content, next year.

Consequently, draft proposals, criteria, rationales, severity specifiers and for some categories, PDF files expanding on proposals and rationales, as they had stood at the time of the third draft, are no longer available for review or for comparison with earlier iterations of the draft directly from links on the site’s home page text or from links in a Proposals tab drop-down menu along the top of the home page.

According to the DSM-5 Development home page and recent commentary from Task Force Chair, David J Kupfer, MD, DSM-5 remains on target for release in May 2013.

No recent projections for the date by which an online version of the DSM-5 is expected to be available, post publication of the print edition, have come to my attention but it is anticipated that access to any online version of the manual would be available via subscription – not as a freely accessible public domain version, as ICD-10-CM and ICD-11 will be when they are published and implemented.

Changes to content on DSM-5 Development site (1)

Changes to content on DSM-5 Development site (1)

Post #189 Shortlink: http://wp.me/pKrrB-2jn

 

Content embargo

According to American Psychiatric Association’s recently published, highly restrictive DSM-5 Permissions Policy – following closure of the third and final public review, the content of DSM-5 will be under strict embargo until the manual is published.

DSM-5 is expected to be finalized by December 31 for publication in May 2013.

APA closed its third stakeholder review of draft proposals for DSM-5 categories and criteria on June 15 and issued a Press Release on June 26 – write-up from Deborah Brauser for Medscape Medical News, below.

Between closure of the final review and Wednesday, June 27, the DSM-5 Development site stated that although comments on proposals could no longer be submitted through the website the site would remain viewable with the draft proposals until DSM-5’s publication.

That line of text was deleted from the DSM-5 Development site home page yesterday, Thursday, June 28.

It remains unconfirmed whether it is now APA’s intention to remove the draft as it stood at the third review from the DSM-5 Development site at some point between now and the slated publication date.

 

Categories and criteria text frozen during final revisions

According to DSM-5 Development home page text, revisions to categories and criteria will continue to be made between now and the end of 2012 in response to stakeholder feedback; continued analysis of DSM-5 Field Trial results; scrutiny by the DSM-5 Scientific Review Committee which will review scientific validating evidence for revisions; an extensive peer review process; review by an Assembly DSM-5 committee and an overall final review by the DSM-5 Task Force.

Disorder categories and criteria texts as they currently stand on the website are now frozen and the site content will not be updated to reflect any further revisions and edits made between June 15 and submission of final texts, later this year, for approval by APA Board of Trustees.

None of the manual’s extensive textual content that will accompany the new categories has been out on public review.

The remainder of the development process is set out on the Home Page under “Next Steps” and in the APA Board Materials Packet – December 10-11, 2011. This document sets out the DSM-5 Development program from December 2011 until May 2013:

Open here: Item 11.A – DSM Task Force Report

 

From Medscape Medical News > Psychiatry

Last DSM-5 Public Review Period Ends With 2000 Comments

Deborah Brauser | June 26, 2012

June 26, 2012 — The latest and final public comment period for the upcoming Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) ended on June 15 — but not before logging 2298 responses from around the world, the American Psychiatric Association (APA) reports.

This was the third public comment period that has been opened for online feedback regarding the manual’s proposed criteria changes. To date, there have been a total of 15,000 public comments posted…

Read full report

Ed: Free registration required for access to most parts of Medscape site.

 

Comment on closure of third and final draft review from 1 Boring Old Man

1 Boring Old Man

missed opportunity…

Wednesday, June 27, 2012

 

Related material

1] APA News Release June 26, 2012

2] DSM-5 Development Timeline

3] DSM-5 Development Permissions Policy

4] DSM-5 Terms and Conditions of Use

DSM-5 draft criteria draws nearly 2,300 responses in final public comment period

DSM-5 draft criteria draws nearly 2,300 responses in final public comment period

Post #187 Shortlink: http://wp.me/pKrrB-2j0

According to a Press Release issued yesterday by the American Psychiatric Association (APA), the final public comment period on draft diagnostic criteria for the forthcoming Diagnostic and Statistical Manual of Mental Disorders (DSM-5) drew 2,298 responses.

APA previously reported receiving around 8,600 comments in the first stakeholder comment period and around 2,100 submissions in the second review.

During the second public comment period (May-June 2011), the specific diagnostic categories that received the most comments had been the sexual and gender identity disorders, followed closely by somatic symptom disorders and anxiety disorders.  (As reported by DSM-5 Task Force Vice-chair, Darrel Regier M.D.)

For this final review that closed on June 15, APA reports, “Although each disorder area drew a wide range of comments, the two Work Groups with the highest number were the Neurodevelopmental Work Group (397 comments) and the Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic Stress and Dissociative Disorders Work Group (545 comments). APA also received more than 800 comments focused broadly on DSM-5.”

 

No publication of field trial data

What the News Release fails to address is APA’s withholding of its field trial results while the third and final feedback exercise was in progress, other than releasing some Kappa data to press and conference at its Annual Meeting, in May. Professional stakeholders, advocacy organizations and lay public have been obliged to submit feedback on the third draft without the benefit of scrutiny of reliability and prevalence data to inform their submissions.

[See: Deborah Brauser for Medscape Medical News: interview with Darrel Regier, May 8, 2012 and reports by 1 Boring Old Man]

APA has given no indication of whether it still intends placing Kappa results and other field trial findings in the public domain or whether reports on its field trial findings will only be accessible at some point in the future published in subscription only or pay by the paper peer review journals, from which many stakeholders would be disenfranchised.

On June 17, I asked American Psychiatric Association’s CEO and Medical Director, Dr James H. Scully, why the field trial report was withheld; whether Task Force still intends placing field trial data in the public domain and when a report might be anticipated. I’ve received no response.

 

Collating submissions

I continue to collate copies of submissions from patient organizations, patients and advocates on these pages in response to the proposals of the Somatic Symptom Disorders Work Group. If professional body submissions include comment on this specific section of DSM-5, I would be interested in receiving copies with a view to publication of extracts or links to full submissions.

Given that thresholds for the Somatic Symptom Disorder criteria have been lowered for the third draft and given the implications for their constituencies, the response of US, UK and international patient organizations to calls for submissions in this third and final review was abysmal.

I’d like to thank patients, advocates and those organizations that did submit comment in response to the proposals of the Somatic Symptom Disorders Work Group.  I’d also like to thank Maarten Maartensz for his commentaries on DSM-5 proposals over the past two years.

 

APA News Release June 26, 2012 appended:

Open PDF Press Release No. 12-30

DSM-5 Draft Criteria Draws Nearly 2,300 Responses

Mental health diagnostic manual closes final public comment period

ARLINGTON, Va. (June 26, 2012) – The final public comment period for the draft diagnostic criteria of the upcoming Diagnostic and Statistical Manual of Mental Disorders (DSM-5) drew 2,298 responses from across the country and abroad. The six-week comment period ended June 15.

This feedback, submitted online to the American Psychiatric Association (APA), adds to the extensive responses submitted during the two other open comment periods. In total, more than 15,000 comments about the proposed DSM-5 criteria have been received since 2010 from mental health clinicians and researchers, the overall medical community, and patients, families and advocates. As was the case following the other comment periods, the DSM-5 Task Force and Work Groups will now review and consider each response as they begin final revisions to the criteria.

“Every comment period has provided valuable perspective from a wide range of professionals, consumers and advocates,” said APA President Dilip V. Jeste, MD. “We are grateful for their participation and willingness to review the draft proposals and to share their opinions and experiences. The Work Groups consider the feedback a huge asset as they shape the final DSM-5 proposals.”

Although each disorder area drew a wide range of comments, the two Work Groups with the highest number were the Neurodevelopmental Work Group (397 comments) and the Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic Stress and Dissociative Disorders Work Group (545 comments). APA also received more than 800 comments focused broadly on DSM-5.

After the Work Groups make their last revisions to the draft diagnostic criteria, the proposals will receive multi-level reviews by the entire DSM-5 Task Force, a separate Scientific Review Committee and a Clinical and Public Health Committee. The latter two committees will be working to evaluate the strength of scientific evidence supporting significant changes and to assess the impact of changes for clinicians and public health.

The Task Force will make recommendations to the APA Board of Trustees for its final decisions on the manual’s fifth edition late this year.

The American Psychiatric Association is a national medical specialty society whose more than 36,000 physicians specialize in the diagnosis, treatment prevention and research of mental illnesses, including substance abuse disorders. Visit the APA at www.psych.org  and www.healthyminds.org.

Three professional organization responses to third and final DSM-5 stakeholder review

Three professional organization responses to the third and final DSM-5 stakeholder review

Post #185 Shortlink: http://wp.me/pKrrB-2hS

According to DSM-5 Task Force Vice-chair, Darrel Regier M.D., the specific diagnostic categories that received most comments during the second public review of draft proposals (May-June 2011) were the sexual and gender identity disorders, followed closely by somatic symptom disorders and anxiety disorders.

The American Psychiatric Association (APA) has yet to report how many comments the DSM-5 Task Force and its 13 Work Groups received during this third and final review period (which closed last Friday), or which categories garnered the most responses, this year.

 

No publication of field trial data

Following posting of the third draft on May 2, it was anticipated APA would publish full results from the DSM-5 field trials “within a month”. [Source: Deborah Brauser for Medscape Medical News: interview with Darrel Regier, May 8, 2012.]

No report emerged and stakeholders had little choice but submit feedback on this latest iteration without the benefit of scrutiny of reliability data to inform their submissions.

APA has yet to account for its failure to place its field trial results in the public domain while the feedback exercise was in progress, other than releasing some Kappa data at its May 5-9 Annual Conference.

American Psychiatric Association CEO and Medical Director, James H. Scully, Jr., M.D., blogs at Huffington Post. Last week, I asked Dr Scully why the field trial report has been withheld; whether Task Force still intends publishing field trial data and when that report might now be anticipated. 

I’ve received no response from Dr Scully and APA has put out no clarification.

 

No publication of list of Written Submissions

These three DSM-5 public reviews of draft proposals for changes to DSM-IV categories and criteria have not been managed as formal stakeholder consultation exercises.

APA publishes no aggregations of key areas of concern identified during public comment periods nor publishes Work Group or Task Force responses to key areas of professional or lay public concern on the DSM-5 Development website  – an issue I raised with the Task Force during both the first and second reviews.

Although some published submissions (ACA, British Psychological Society and the DSM-5 Reform Open Letter and Petition Committee) have received responses from the Task Force and which APA has elected to place in the public domain, submissions from the majority of professional bodies and organizations disappear into a black hole.

In the interests of transparency, APA could usefully publish lists of the names of US and international professional bodies, academic institutions, patient advocacy organizations etc. that have submitted comments, in the way that Written Submissions are listed in the annexes to reports and public inquiries.

That way, interested parties might at least approach organizations to request copies of submissions or suggest that these are placed in the public domain.

APA could not legitimately claim it would require permissions before publishing full lists of the names of professional body, academic institution and organization respondents that tendered formal responses – its legal department’s boilerplate Terms and Conditions of Use gives APA carte blanche to make use of and publish uploaded submissions in any way it sees fit.*

*See Terms and Conditions of Use, under “User Submissions” 

 

The following have released their submissions in response to the third draft:

Submission from The American Mental Health Counselors Association (AMHCA)

The American Mental Health Counselors Association is a nationwide organization representing 6,000 clinical mental health counselors. Their submission includes concerns for the lowering of the “B type” threshold requirement for “Somatic Symptom Disorder” criteria between the second and third drafts.

[In the CSSD field trials, about 15% of the “diagnosed illness” study group (patients with cancer and coronary disease) met the criteria for coding with an additional mental health diagnosis of “SSD” when “one B type” cognition was required; about 10% met the criteria when “two B type” were required. About 26% of the “functional somatic” arm of the study group (patients with irritable bowel and “chronic widespread pain” – a term used synonymously with fibromyalgia) met the criteria for coding with an additional mental health diagnosis of “SSD” when “one B type” cognition was required; about 13% met the criteria when “two B type” were required. AMHCA recommends raising the threshold back to at least two from the three B type criteria, as the criteria for CSSD had stood for the second draft. I consider the category of “SSD” should be rejected in the absence of a substantial body of independent evidence for the reliability, validity and safety of “SSD” as a construct.]

AMHCA Submits Comments on DSM-5 06/19/12

June 18, 2012 – Alexandria, VA – The DSM-5 Task Force of the American Mental Health Counselors Association (AMHCA) has submitted comments for the third period of public comment on the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

AMHCA’s comments addressed 12 disorder categories and the Cultural Formulation Interview Guide. Per the site requirements, each was sent separately to the particular disorder site.

    Download compilation of comments submitted by AMHCA DSM-5 Task Force

Somatic Symptom Disorders

“Somatic Symptom Disorder

“A major change in this revision is the merger of Complex Somatic Symptom Disorder and Simple Somatic Symptom Disorder into one disorder, Somatic Symptom Disorder. The increased emphasis placed on cognitive distortions (along with the presence of somatic symptoms ) provides greater clarity about the nature of the disorder. However, the notion that a single B.2 criteria could be used as the sole basis for identifying these cognitive aspects seems to open the door to diagnosing individuals who have legitimate “high anxiety” about their symptoms. We recommend considering “two of three” criteria under B be required.”

 

The British Psychological Society writes:

The British Psychological Society still has concerns over DSM-V

…For all the reasons stated above, the BPS, having reviewed the currently proposed revisions of the new diagnostic criteria in DSM 5, continues to have major concerns. These have, if anything, been increased by the very poor reliabilities achieved in many of the recent field trials (Huffington Post, 2012), especially given the limited time available to attempt to achieve more satisfactory outcomes. Since validity depends, at the very least, on acceptable levels of reliability, the unavoidable conclusion is that many of the most frequently-used categories will be unable to fulfil their purported purposes, i.e. identification of appropriate treatments, signposting to support, providing a basis for research…

Read full submission to third draft here in PDF format.

Response to second draft here.

Christopher Lane comments:

Psychology Today | Side Effects

Arguing Over DSM-5: The British Psychological Society Has Serious Concerns About the Manual

The BPS expresses “serious reservations” about the next DSM.

Christopher Lane, Ph.D. in Side Effects | June 20, 2012

Although the American Psychiatric Association recently closed its window allowing comments on proposed changes to the DSM, the organization has yet to report on the field trials it devised for the next edition of the psychiatric manual, themselves meant to support—indeed, serve as a rationale for—the changes it is proposing in the first place.

While this unhappy outcome points to some of the organization’s chicken-and-egg problems with the manual and the disorders it is seeking to adjust or make official, those wanting to respond to the draft proposals have had to do so in the dark, unaware of the results of the field trials and thus whether the proposals draw from them any actual empirical support…

Read on

 

Submission from American Counseling Association (ACA)

The American Counseling Association (ACA), represents more than 50,000 counselors – one of the largest groups of DSM-5 users in the US.

ACA provides final comments on the DSM-5

ACA President Don W. Locke has sent the American Psychiatric Association a letter providing final comments for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Based on comments from ACA members and the ACA DSM Task Force, the letter acknowledges useful changes that had been made to previous drafts of the DSM-5: the development of the Cultural Formulation Outline, reversing the pathologizing of normal bereavement, and limiting the expansion of personality disorder types. ACA also calls for addressing the one-dimensional nature of the new Substance Use Disorder category and rejects the proposed dimensional assessments. Click here to view letter.

This is the third letter ACA has sent to the American Psychiatric Association providing feedback for the DSM-5. Click the links below to read the previous letters and a response from APA:

Letter from President Lynn Linde, April 16, 2010

Letter from President Don Locke, November 8, 2011

Response from APA President John Oldham, November 21, 2011

 

Submission by Coalition for DSM-5 Reform Committee

The Coalition for DSM-5 Reform Open Letter and Petition has garnered support from over 13,700 professionals and concerned stakeholders and the endorsement of nearly 50 organizations, since launching last October.

The DSM-5 Reform Committee continues to call for independent scientific review of draft proposals and submitted the following response during this third and final comment period:

Submission from Coalition for DSM-5 Reform (Society for Humanistic Psychology)Division 32 of the American Psychological Association)

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

As you know, the Open Letter Committee of the Society for Humanistic Psychology and the Coalition for DSM-5 Reform have been following the development of DSM-5 closely.

We appreciate the opportunity for public commentary on the most recent version of the DSM-5 draft proposals. We intend to submit this brief letter via the dsm5.org feedback portal and to post it for public viewing on our website at http://dsm5-reform.com/

Since its posting in October 2011, the Open Letter to the DSM-5, which was written in response to the second version of the draft proposals, has garnered support from almost 50 mental health organizations and over 13,500 individual mental health professionals and others.

Our three primary concerns in the letter were as follows: the DSM-5 proposals appear to lower diagnostic thresholds, expanding the purview of mental disorder to include normative reactions to life events; some new proposals (e.g., “Disruptive Mood Dysregulation Disorder” and “Attenuated Psychosis Syndrome”) seem to lack the empirical grounding necessary for inclusion in a scientific taxonomy; newly proposed disorders are particularly likely to be diagnosed in vulnerable populations, such as children and the elderly, for whom the over-prescription of powerful psychiatric drugs is already a growing nationwide problem; and the increased emphasis on medico-biological theories for mental disorder despite the fact that recent research strongly points to multifactorial etiologies.

We appreciate some of the changes made in this third version of the draft proposals, in particular the relegation of Attenuated Psychosis Syndrome and Mixed Anxiety-Depression to the Appendix for further research. We believe these disorders had insufficient empirical backing for inclusion in the manual itself. In addition, given the continuing elusiveness of biomarkers, we are relieved to find that you have proposed a modified definition of mental disorder that does not include the phrase “underlying psychobiological dysfunction.”

Despite these positive changes, we remain concerned about a number of the DSM-5 proposals, as well as the apparent setbacks in the development process.

Our continuing concerns are:

 The proposal to include new disorders with relatively little empirical support and/or research literature that is relatively recent (e.g., Disruptive Mood Dysregulation Disorder)

 The lowering of diagnostic thresholds, which may result in diagnostic expansion and various iatrogenic hazards, such as inappropriate treatment and stigmatization of normative life processes. Examples include the newly proposed Minor Neurocognitive Disorder, as well as proposed changes to Generalized Anxiety Disorder, Attention Deficit/Hyperactivity Disorder, Pedophilia, and the new behavioral addictions.

The perplexing Personality Disorders overhaul, which is an unnecessarily complex and idiosyncratic system that is likely to have little clinical utility in everyday practice.

 The development of novel scales (e.g., severity scales) with little psychometric testing rather than utilizing established standards.

In addition, we are increasingly concerned about several aspects of the development process. These are:

Continuing delays, particularly in the drafting and field testing of the proposals.

 The substandard results of the first set of field trials, which revealed kappas below accepted reliability standards.

 The cancelation of the second set of field trials.

The lack of formal forensic review.

Ad hominem responses to critics.

The hiring of a PR firm to influence the interpretation and dissemination of information about DSM-5, which is not standard scientific practice.

We understand that there have been recent attempts to locate a “middle ground” between the DSM-5 proposals and DSM-5 criticism. We believe that, given the extremity and idiosyncrasy of some of the proposed changes to the manual, this claim of a “middle ground” is more rhetorical and polemic than empirical or measured. A true middle ground, we believe, would draw on medical ethics and scientific standards to revise the proposals in a careful way that prioritizes patient safety, especially protection against unnecessary treatment, above institutional needs.

Therefore, we would like to reiterate our call for an independent scientific review of the manual by professionals whose relationship to the DSM-5 Task Force and/or American Psychiatric Association does not constitute a conflict of interest.

As the deadline for the future manual approaches, we urge the DSM-5 Task Force and all concerned mental health professionals to examine the proposed manual with scientific and expert scrutiny.

It is not only our professional standards, but also – and most importantly – patient care that is at stake. We thank you for your time and serious consideration of our concerns, and we hope that you will continue to engage in dialogue with those calling for reform of DSM-5.

Sincerely,

The DSM-5 Open Letter Committee of the Society for Humanistic Society, Division 32 of the American Psychological Association

APA closes third and final comment period: fails to publish field trial results

APA closes third and final comment period: fails to publish field trial results

Post #184 Shortlink: http://wp.me/pKrrB-2gs

So that’s it.

The third and final review of draft proposals for DSM-5 categories and criteria wrapped up last night.

APA closed the DSM-5 Development site for feedback around midnight without publishing its promised report on the DSM-5 field trial results.

Stakeholders have been obliged to submit feedback without the benefit of scrutinizing reliability data or any other information about the field trials APA had intended/may still intend/does not intend publishing.

James H. Scully, Jr., M.D., American Psychiatric Association CEO and Medical Director, blogs at Huffington Post.

I’ve asked Dr Scully why the report has been withheld; whether the Task Force still intends to publish field trial data and when that report might be anticipated.

If APA is so confidence about its field trial results, why the reluctance to place this data in the public domain?

In his Huff Po commentary of May 31, Dr Scully claimed:

“…DSM-5, unlike DSM-IV, invited comments from the world, and the work groups and task force considered every one of the more than 25,000 comments received and conducted further research where indicated.”

Following the first posting of draft proposals, out on review for ten weeks in spring 2010, APA reported receiving around 8,600 submissions; for the second review, around 2,120. I’m curious about this figure of “25,000 comments.”

I’ve asked Dr Scully, will he account for that figure of a total of 25,000 comments so far? I’ll update if Dr Scully responds.

According to Task Force Vice-Chair, Darrel Regier, M.D., the specific diagnostic categories that received the most comments during the second public review and feedback exercise had been the sexual and gender identity disorders, followed closely by somatic symptom disorders and anxiety disorders.

Following closure of the two previous public reviews, APA issued statements and articles. I will update with any statements that are released.

 

What now?

Content on the DSM-5 Development site (proposals for changes to categories, criteria, rationales, severity specifiers etc) is now frozen.

The site will not be updated to reflect any revisions and edits made between June 15 and submission of final texts, later this year, for approval by APA Board of Trustees.

The remainder of the development process is set out on the Home Page under “Next Steps” and in the APA Board Materials Packet – December 10-11, 2011. This document sets out the DSM-5 Development program from December 2011 until May 2013:

Open here: Item 11.A – DSM Task Force Report

According to APA’s newly published and highly restrictive DSM-5 Permissions Policy – following closure of this third and final public review and comment period, content of DSM-5 will be under strict embargo until the manual is published.

Final text is expected to be presented to APPI, the APA’s publishing arm, by December 31 for May 2013 publication.

I shall continue to update this site with any developments and with media coverage and commentary.

 

DSM-5 Round up

At DSM 5 in Distress, Allen Frances challenges “APA Newspeak”:

DSM5 in Distress
The DSM’s impact on mental health practice and research.

Top 10 Indicators Of DSM-5 Openness
Challenging APA newspeak.

Allen Frances, M.D. | June 15, 2012

In ‘1984’, George Orwell introduced the term ‘Newspeak’ – the abuse of language by totalitarian bureaucracies to create an upside down, looking glass world of misinformation. He was probably inspired by ‘Pravda,’ the Soviet Union’s propaganda paper that literally means ‘truth’ in Russian but was famous for publishing everything but.

This brings us to the American Psychiatric Association. Its medical director recently justified the astounding $25 million APA has already spent on DSM 5 (5 times the cost of DSM IV) with a curious claim- DSM 5 was so exorbitantly expensive because it was so unprecedentedly open. This classic Newspeak kills two truth birds with one stone — DSM 5 didn’t waste a huge amount of money and DSM 5 didn’t fail because it was a closed shop. The futile hope is that black will become white if only you say it enough times.

In fact, it is very cheap to run an open process — and very expensive to run a PR disinformation campaign. It cost me nothing but an hour’s time to write this blog. How much, I wonder, will it cost APA to pay off GYMR (its high powered public relations producer of newspeak pravda) to defend its indefensible claims that DSM 5 is an open process and that it can meet its unrealistic timetable with a reliable manual?

Here is a top 10 list of great moments in the history of APA ‘openness’.

1) APA forces work group members to sign confidentiality agreements to protect DSM 5 ‘intellectual property’.

2) DSM 5 does a confidential and super-secret ‘scientific’ review of itself- real science is never secret.

3) APA rebuffs calls from 51 mental health associations for an open and independent scientific review.

4) APA’s legal office tries to stifle criticism and censor the internet using inappropriate and bullying threats of trademark litigation.

5) APA plans to steeply jack up licensing costs for use of DSM criteria sets in order to recoup its unaccountably huge investment on its ‘intellectual property’.

6) DSM 5 only reluctantly engages on the issues and instead stonewalls criticism with offensive and defensive tactics.

7) The original DSM 5 plan for field trials included no prior public viewing of criteria sets and no period for public comment. These are added only under heavy outside pressure.

8) DSM 5 publishes no aggregations of key areas of concern identified during public reviews; doesn’t respond publicly to them and there is no indication that public input has had any impact whatever on DSM 5.

9) The APA ‘charitable’ foundation (meant to provide open public education) is named by a watchdog group as the 7th worst charity in all of the US.

10) APA promises to post a complete set of DSM 5 reliability data in time to allow comments during the final period of public review- but fails to do so.

And this is just a taster. At least a dozen reporters have spontaneously mentioned to me that never in their careers have they encountered anything so byzantine as the APA press office. And dozens of APA members have emailed their frustration at not being able to get a straight (or any) answer from a staff whose salaries are paid by their membership dues.

It requires lots of time, money, and brain power to create ‘pravda.’ Perhaps this explains why everything connected with DSM 5 is always so late and so expensive and why a high flying hired gun like GYMR is needed to run its interference. The real truth is fast, cheap, and very simple to explain.

Additional research is available at Suzy Chapman’s website. She monitors DSM-5 development at https://dxrevisionwatch.wordpress.com

 

On June 13, the American Counseling Association, representing 50,000 US counselors, published its submission to DSM-5:

ACA provides final comments on the DSM-5

ACA President Don W. Locke has sent the American Psychiatric Association a letter providing final comments for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Based on comments from ACA members and the ACA DSM Task Force, the letter acknowledges useful changes that had been made to previous drafts of the DSM-5: the development of the Cultural Formulation Outline, reversing the pathologizing of normal bereavement, and limiting the expansion of personality disorder types. ACA also calls for addressing the one-dimensional nature of the new Substance Use Disorder category and rejects the proposed dimensional assessments. Click here to view letter.

This is the third letter ACA has sent to the American Psychiatric Association providing feedback for the DSM-5. Click the links below to read the previous letters and a response from APA:

 
 
 

The DSM-5 Open Letter Committee of the Society for Humanistic Psychology, Division 32 of the American Psychological Association is publishing its response to the third draft :

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

As you know, the Open Letter Committee of the Society for Humanistic Psychology and the Coalition for DSM-5 Reform have been following the development of DSM-5 closely.

We appreciate the opportunity for public commentary on the most recent version of the DSM-5 draft proposals. We intend to submit this brief letter via the dsm5.org feedback portal and to post it for public viewing on our website at http://dsm5-reform.com/

Since its posting in October 2011, the Open Letter to the DSM-5, which was written in response to the second version of the draft proposals, has garnered support from almost 50 mental health organizations and over 13,500 individual mental health professionals and others.

Our three primary concerns in the letter were as follows: the DSM-5 proposals appear to lower diagnostic thresholds, expanding the purview of mental disorder to include normative reactions to life events; some new proposals (e.g., “Disruptive Mood Dysregulation Disorder” and “Attenuated Psychosis Syndrome”) seem to lack the empirical grounding necessary for inclusion in a scientific taxonomy; newly proposed disorders are particularly likely to be diagnosed in vulnerable populations, such as children and the elderly, for whom the over-prescription of powerful psychiatric drugs is already a growing nationwide problem; and the increased emphasis on medico-biological theories for mental disorder despite the fact that recent research strongly points to multifactorial etiologies.

We appreciate some of the changes made in this third version of the draft proposals, in particular the relegation of Attenuated Psychosis Syndrome and Mixed Anxiety-Depression to the Appendix for further research. We believe these disorders had insufficient empirical backing for inclusion in the manual itself. In addition, given the continuing elusiveness of biomarkers, we are relieved to find that you have proposed a modified definition of mental disorder that does not include the phrase “underlying psychobiological dysfunction.”

Despite these positive changes, we remain concerned about a number of the DSM-5 proposals, as well as the apparent setbacks in the development process.

Our continuing concerns are:

The proposal to include new disorders with relatively little empirical support and/or research literature that is relatively recent (e.g., Disruptive Mood Dysregulation Disorder)

The lowering of diagnostic thresholds, which may result in diagnostic expansion and various iatrogenic hazards, such as inappropriate treatment and stigmatization of normative life processes. Examples include the newly proposed Minor Neurocognitive Disorder, as well as proposed changes to Generalized Anxiety Disorder, Attention Deficit/Hyperactivity Disorder, Pedophilia, and the new behavioral addictions.

The perplexing Personality Disorders overhaul, which is an unnecessarily complex and idiosyncratic system that is likely to have little clinical utility in everyday practice.

The development of novel scales (e.g., severity scales) with little psychometric testing rather than utilizing established standards.

In addition, we are increasingly concerned about several aspects of the development process. These are:

Continuing delays, particularly in the drafting and field testing of the proposals.

The substandard results of the first set of field trials, which revealed kappas below accepted reliability standards.

The cancelation of the second set of field trials.

The lack of formal forensic review.

Ad hominem responses to critics.

The hiring of a PR firm to influence the interpretation and dissemination of information about DSM-5, which is not standard scientific practice.

We understand that there have been recent attempts to locate a “middle ground” between the DSM-5 proposals and DSM-5 criticism. We believe that, given the extremity and idiosyncrasy of some of the proposed changes to the manual, this claim of a “middle ground” is more rhetorical and polemic than empirical or measured. A true middle ground, we believe, would draw on medical ethics and scientific standards to revise the proposals in a careful way that prioritizes patient safety, especially protection against unnecessary treatment, above institutional needs.

Therefore, we would like to reiterate our call for an independent scientific review of the manual by professionals whose relationship to the DSM-5 Task Force and/or American Psychiatric Association does not constitute a conflict of interest.

As the deadline for the future manual approaches, we urge the DSM-5 Task Force and all concerned mental health professionals to examine the proposed manual with scientific and expert scrutiny.

It is not only our professional standards, but also –and most importantly– patient care that is at stake. We thank you for your time and serious consideration of our concerns, and we hope that you will continue to engage in dialogue with those calling for reform of DSM-5.

Sincerely,

The DSM-5 Open Letter Committee of the Society for Humanistic Society, Division 32 of the American Psychological Association

National ME/FM Action Network (Canada) submission to DSM-5 third draft

National ME/FM Action Network (Canada) submission to DSM-5 third draft

Post #180 Shortlink: http://wp.me/pKrrB-2eK

Submitted by the National ME/FM Action Network (Canada) to the APA, June 11, 2012

For the attention of the Somatic Symptom Disorders Work Group :

The National ME/FM Action Network, the association representing Canadians with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia, wrote to you a year ago asking you to refrain from including Complex Somatic Syndrome Disorder (CSSD) in the proposed DSM-5. A copy of our previous letter is attached below.

We note that, in the new version of DSM-5, CSSD has been rolled into the category Somatic Symptom Disorders (SSD). This does absolutely nothing to allay our concerns.

ME/CFS and Fibromyalgia are not psychiatric illnesses. They should be handled like other chronic physical diseases. If the symptoms cause patients to become worried or discouraged, the appropriate response would be to try to reduce the stresses experienced by patients or to increase the support they receive. As for all chronic diseases, treatment for anxiety or depression may be helpful in some cases. This is already possible under the DSM. The SSD category adds no new services for patients.

Patients with ME/CFS and Fibromyalgia feel especially vulnerable under the SSD category because these illnesses are frequently discounted or under-appreciated and, as a result, appropriate expressions of concern by patients can be perceived as excessive. Labelling the patient as over-reacting makes it easy for the health and social service systems to blame the patients for their situation and to discount their legitimate concerns. The potential for misuse and abuse of patients through the new SSD category is enormous.

We asked in the strongest possible terms that SSD be dropped from DSM-5.

Margaret Parlor
President
NATIONAL ME/FM ACTION NETWORK
www.mefmaction.com

June 2011

For the attention of the Somatic Symptom Disorders Work Group :

The National ME/FM Action Network works on behalf of Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. Our organization was founded in 1993 and has many accomplishments to its credit. A leading accomplishment was spearheading the development of the Canadian Consensus diagnostic and treatment protocols for ME/CFS and Fibromyalgia. These criteria are receiving strong international support. Another major accomplishment was publishing statistics on these conditions. Our analysis, based on a major Statistics Canada survey, showed that there were 628,500 Canadians diagnosed with one or both of these conditions in 2005 and that they experienced high degrees of disability, disadvantage and unmet needs in comparison with other chronic illness cohorts.

Diagnostic criteria are very important. DSM-5 will be used to determine who qualify for psychiatric services. Criteria are problematic if they result in false negatives (people who do not qualify for services but who would benefit from them) or false positives (people who qualify for services do not benefit from them). We are concerned the proposed new category for Chronic Somatic Syndrome Disorder (CSSD) will result in an unacceptable number of false positives in the ME/FM community.

A fundamental question is how psychiatry can help patients with ME/CFS and Fibromyalgia.

Some psychiatrists have proposed Cognitive Behaviour Therapy as a treatment for Chronic Fatigue Syndrome. A recent UK study examined the benefits of CBT for patients with CFS. Patient groups have pointed out numerous issues around the study design and how study population was selected and would reject the study as badly flawed. However, even taking the study at face value, the study showed that CBT was of minor benefit to patients, akin to the benefits of CBT for other chronic illnesses. CBT does not get to the heart of the illness. ME/CFS and Fibromyalgia are not psychiatric disorders.

Our position on the role of psychiatry is simple and clear. We think that psychiatry should play the same role for ME/CFS and Fibromyalgia patients as it does for patients with other chronic physical illnesses like cancer, diabetes or arthritis. Those patients receive psychiatric support if and only if psychiatric issues are apparent after medical and social supports in place. We would like to refer you to a document entitled “Assessment and Treatment of Patients with ME/CFS; Clinical Guidelines for Psychiatrists” by Dr. Eleanor Stein, a Canadian psychiatrist. This document describes an appropriate role for psychiatrists in assessing and treating ME/CFS, respecting the reality of the illness.

Over the years, we have heard many stories from patients with ME/CFS or Fibromyalgia who went to a doctor for help only to be fobbed off to a psychiatrist because the family doctor did not believe their symptoms or did not know how to help, rather than because the patient needs psychiatric services. This situation does not help patients – it denies their experiences, it undercuts their credibility and it distracts from their real issues. This situation does not help psychiatry either as it is called upon to solve problems that it cannot solve.

The new Complex Somatic Syndrome Disorder category could compound this situation. A patient with ME/CFS or Fibromyalgia would get a diagnosis of CSSD if a doctor believes the patient is overreacting to the illness, even if the patient is actually behaving very rationally. The patient would be labelled with a undeserved, unhelpful and misleading psychiatric label which would make dealing with the core health issues even more difficult than they already are.

The CSSD category could be very harmful to patients with ME/CFS and Fibromyalgia. We ask you to refrain from including CSSD in DSM-5 in the absence of protections to ensure that patients with ME/CFS and Fibromyalgia do not receive false positive diagnoses.

Margaret Parlor
President
NATIONAL ME/FM ACTION NETWORK

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