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.

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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

Action for M.E. submission to third and final DSM-5 public review (closes June 15)

Action for M.E. submission to third and final DSM-5 public review (May 2 – June 15 2012)

Page #179: Shortlink: http://wp.me/pKrrB-2eC

A reminder there are just 4 days left in which to submit feedback.

Comment period scheduled to close June 15.

Organizations, professionals, patients and advocates submitting comments in the third DSM-5 draft proposal review process are invited to provide me with copies of their submissions for publication. Submissions to the third and final DSM-5 public review are being collated on this page: http://wp.me/PKrrB-1Ol

Today, Action for M.E., has forwarded its response to the third draft:

Action for M.E.

DSM-5 Action for M.E. response

12 June 2012

Action for M.E. has formally commented on the latest draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), due to be published in May 2013 by the American Psychiatric Association (APA).

We told the APA that:

“Action for M.E. notes the revised draft of DSM-5 and remains opposed to any attempt to classify CFS/M.E. as a somatic symptom disorder either explicitly or implicitly.

Comments made previously in the APA Work Group on somatoform disorders and in public by Dr Dimsdale, the SSD Work Group Chair, are far from reassuring in this respect.

Regrettably there are still General Practitioners in the UK who fail to take CFS/ME seriously and are ill informed about how to achieve a specific diagnosis. So there should be nothing in DSM-5 that will give any support to outdated views that are severely detrimental to patient care.

The presumption that ME/CFS is a somatic symptom disorder is not supported by the increasing body of research evidence pointing to the existence of underlying physical pathology. While not challenging the underlying structure of DSM-V, in our view ME/CFS would be appropriately classified in sections S03 or S04, mild or severe neurocognitive disorders secondary to underlying physical diseases, in particular neurodegenerative diseases.”

We have also responded to previous drafts.

Related content and posts:

Somatic Symptom Disorders, DSM-5 Development site

Call to action – DSM-5 comments needed by June 15, 2012:  http://wp.me/pKrrB-2bO

Somatic Symptom Disorder criteria could capture millions more under mental health diagnosis: http://wp.me/pKrrB-29B

DSM-5 Somatic Symptom Disorders: Differences between second and third draft for CSSD: http://wp.me/pKrrB-27y

DSM-5 Somatic Symptoms Work Group submissions 2012: Last chance to tell SSD Work Group why it needs to ditch unsafe and scientifically flawed proposals: http://wp.me/pKrrB-26q

Welcome to DSM-5 Facts (The APA’s new PR site)

Welcome to DSM-5 Facts (The APA’s new PR site)

Post #175 Shortlink: http://wp.me/pKrrB-2cm

There’s just a couple of weeks left until the deadline for receipt of stakeholder comments in the third and final review of DSM-5 proposals but still no sign of the promised “full results of the field trials” from the Task Force.

In the meantime, something else from the APA, or rather its PR firm. A spanking new DSM-5 Facts site launched this week “to correct the record” and provide the public with “a complete and accurate view of this important issue.”

http://dsmfacts.org/

Welcome to DSM-5 Facts

The American Psychiatric Association believes strongly in the work that is being done to revise the Diagnostic and Statistical Manual of Mental Disorders (DSM). In preparation for the release of DSM-5, experts from psychiatry, psychology, social work, neuroscience, pediatrics and other fields have committed much of the last five years to reviewing scientific research and clinical data, analyzing the findings of extensive field trials and reviewing thousand of comments from the public.

We welcome scrutiny, not only of this process but of its results.

Regrettably, news reports and commentators alike are filling the discourse with inaccurate, biased or misinformed criticism of DSM-5. Such information undermines the important changes that are being made to the manual, and provokes unwarranted confusion and fear among the individuals and families who stand to benefit most from essential care based on the strongest available diagnostic criteria.

The APA has created this forum to ensure observers of the DSM-5 development process have the facts.

Posted below are recent news stories, articles and opinion pieces, along with our responses, to correct the record, highlight key omissions — and provide essential perspective so that the public has a complete and accurate view of this important issue….

 

On the DSM-5 Facts Issue Accuracy page you’ll find responses to recent articles and Op-Eds by Allen Frances, Paula Caplan, NYT journalist, Benedict Carey, and Cosgrove and Krimsky.

In a counterpoint to Frances’ May 12, New York Times Op-Ed piece, APA responds:

APA Responds to Allen Frances New York Times Op-Ed

There are actually relatively few substantial changes to draft disorder criteria. Those that have been recommended are based on the scientific and clinical evidence amassed over the past 20 years and then are subject to multiple review processes within the APA.

Unfortunately there is no comment facility on this DSM-5 Fact site.

One section for which substantial changes to disorder criteria are being proposed is the Somatoform Disorders.

The Somatic Symptom Disorder Work Group proposes radical changes to this category: to rename the Somatoform Disorders section to “Somatic Symptom Disorders”; eliminate four existing DSM-IV categories: somatization disorder, hypochondriasis, pain disorder, and undifferentiated somatoform disorder; replace these discrete categories and their criteria with a single new category – “[Complex] Somatic Symptom Disorder” and apply new criteria.

“…To receive a diagnosis of complex somatic symptom disorder, patients must complain of at least one somatic symptom that is distressing and/or disruptive of their daily lives. Also, patients must have at least two [Ed: now reduced to “at least one from the B type criteria” since evaluation of the CSSD field trials] of the following emotional/cognitive/behavioral disturbances: high levels of health anxiety, disproportionate and persistent concerns about the medical seriousness of the symptom(s), and an excessive amount of time and energy devoted to the symptoms and health concerns. Finally, the symptoms and related concerns must have lasted for at least six months.

“Future research will examine the epidemiology, clinical characteristics, or treatment of complex somatic symptom disorder as there is no published research on this diagnostic category.”

“…Just as for complex somatic symptom disorder, there is no published research on the epidemiology, clinical characteristics, or treatment of simple somatic symptom disorder.”

Source: Woolfolk RL, Allen LA. Cognitive Behavioral Therapy for Somatoform Disorders. Standard and Innovative Strategies in Cognitive Behavior Therapy.

And from the SSD Work Group  Rationale/Validity Document  (as published on May 4, 2011 for the second public review of draft proposals but not revised or reissued for the third review):

“…The presence of CSSD complicates management of all disorders and must be addressed in the treatment plan.

“It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older 6 diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.

“The B-type criteria are crucial for a diagnosis of CSSD. These criteria in essence reflect disturbance in thoughts, feelings, and/or behaviors in conjunction with long standing distressing somatic symptoms. Whilst an exact threshold is perhaps arbitrary, considerable work suggests that the degree of functional impairment is associated with the number of such criteria. Using a threshold of 2 or more such criteria results in prevalence estimates of XXXX in the general population, XXXX in patients with known medical illnesses, and XXXX in patients who may previously have been considered to suffer from a somatoform illness. {text in development concerning impact of different thresholds for criteria B- from Francis [Creed]}…”

No data on prevalence estimates available for the second review and no data on impact of different thresholds for the B type criteria and prevalence estimates available for the third review.

I will update if a report on the field trials is released.

Commentary from Allen Frances on the launch of this new DSM-5 Fact site.

Huffington Post Blogs | Allen Frances

Public Relations Fictions Trying to Hide DSM 5 Facts

Allen Frances MD | May 31, 2012

Recently APA recruited a public relations guy from the Department of Defense to respond to my concerns that DSM 5 is way off track. He immediately went on the offensive and (in an interview for Time magazine) made the obvious PR mistake of calling me “a dangerous man.” This provided me the opportunity to pose yet again the troubling questions about DSM 5 that APA repeatedly refuses to answer. The DOD guy hasn’t surfaced since.

Instead, APA has adopted a much smoother, soft sell approach. It has hired GYMR — an expensive PR firm. GYMR actually brags in its mission statement that it can “execute strategies that include image and alliance building, public education campaigns or media relations to harness the formidable forces of Washington and produce successful results for clients.”

We now have the first fruits of GYMR’s “image building” misinformation campaign. It has launched a PR website with the claim it will provide “the facts on DSM-5 development process. Read recent news stories & opinion pieces, along with our responses, to correct the record, highlight key omissions — and provide essential perspective, so that the public has a complete and accurate view of this important issue.”

Unfortunately, the site is very short on accurate facts, very long on misleading (or just plain wrong) “image building” fiction. It is all pure PR fluff — a way to avoid answering the substantive questions that need addressing before DSM 5 is prematurely rushed to press. Let’s compare GYMR fiction versus DSM 5 fact:

GYMR Fiction: “We have extensive data from the field trials that on average there is a slight decrease in the overall rates of DSM-5 in comparison to DSM-IV disorders.”

DSM 5 Fact: This is simply wrong — APA has no such data. Except for autism, all of the DSM 5 changes will dramatically raise the rates of mental disorder and mislabel normal people as psychiatrically sick. The field trial provided no data on this crucial question because it made an unforgivable error — not including head to head prevalence comparisons between DSM IV and DSM 5. This makes it impossible to estimate how explosive will be the DSM 5 rate jumps. Moreover, false epidemics are often nurtured in the primary care settings that were untested in the DSM 5 field trials.

GYMR Fiction: The PR claim is that DSM 5 has provided a transparent process.

DSM 5 Fact: DSM 5 has been peculiarly and self-destructively secretive from its early confidentiality agreements (meant to protect intellectual property) to its current failure to make public any of the results of its ‘scientific’ reviews. Real science can never be confidential. None of this secrecy makes any sense.

GYMR Fiction: “APA takes very seriously its responsibility in developing and maintaining DSM and has devoted $25 million to the DSM-5 update process thus far.”

DSM 5 Fact: The $25 million has been a colossal waste of poorly spent money. We did DSM IV for one-fifth the price and never missed a deadline or stirred much controversy. The difference in expenditure and outcome has nothing to do with us being especially competent. It has everything to do with DSM 5 being poorly conceived and organized and spending lavishly on silly things like public relations.

GYMR Fiction: “There are several proposals in DSM-5 that aim to more accurately describe the symptoms and behaviors of disorders that typically present in children.”

DSM 5 Fact: The epidemics of excessive diagnosis in children will be muddled further by DSM 5. The threshold for ADHD is being lowered despite the tripling of rates. Temper Dyregulation (AKA DMDD) is being suggested based on just a few years of work by just one research group — despite the risk it will exacerbate the already inappropriate and dangerous use of antipsychotic drugs in kids. And DSM 5 somehow persists in not understanding how its suggestions will necessarily have a profound impact on rates of autism.

GYMR Fiction: “There are actually relatively few substantial changes to draft disorder criteria.”

DSM 5 Fact: Dead wrong — how did GYMR ever come up with this one? My guess is that the DSM 5 changes would affect the diagnosis of tens of millions of people. APA has no way of refuting this estimate since it unaccountably failed to ask the crucial prevalence question in its $3 million field trial.

GYMR Fiction: “Those that have been recommended are based on the scientific and clinical evidence amassed over the past 20 years and then are subject to multiple review processes within the APA.”

DSM 5 Fact: Most of the reviews are poorly done and none of the suggestions would stand up to the kind of impartial, independent scientific review demanded by a petition supported by 51 mental health associations. The APA internal review lacks any credibility because it is done in secret and has somehow found a way to approve DMDD and the removal of the bereavement exclusion — both of which have little or no scientific support. To be credible, APA must both make public its own scientific reviews and also contract for external and independent reviews on all the most controversial topics.

GYMR Fiction: “The APA governance attention to this is far greater than anything that ever occurred with DSM III or DSM-IV.”

DSM 5 Fact: Absurd on the face of it. If there had ever been anything resembling proper internal supervision, DSM 5 would not be in this deep mess and would not require expensive PR fig leaves to try to cover it up.

There is more, but you get the idea. DSM 5 is in a paradoxical position. Publishing profits pressure it toward premature publication, but its close to final draft is the object of almost universal opposition. On one side we have APA and its new hired gun GYMR — on the other side we have 51 professional organizations, the Lancet, the New England Journal of Medicine, the international media and outraged segments of the public. It is far too late for any superficial “image building,” however clever, to restore DSM 5 credibility. Saving DSM 5 requires radically reforming its mistakes, not covering them up with a PR smokescreen of misinformation.

The last and only hope for a safe and credible DSM 5 now resides in the new APA leadership — it is within its power to thoroughly reform DSM 5 before it is too late.

The stakes are high. A DSM 5 at war with its users will wind up losing many of them. Disillusioned members (each of whom has involuntarily sunk almost $1,000 in this lavish but misdirected DSM 5 effort) will speed up the already rapid exodus of APA members. APA will eventually lose its monopoly on psychiatric diagnosis. Psychiatry will be unfairly discredited. And, worst of all, the patients who need our help will suffer.

DSM 5 is in such public trouble now because it heedlessly missed every prior private opportunity to self-correct. The solution is not the production of more public relations pablum. Instead, DSM 5 needs to regroup, solve its problems, and avoid racing over a cliff.

American Psychiatric Association (APA) Assembly Notes and Full Treasurer’s Report

American Psychiatric Association (APA) Assembly Notes and Full Treasurer’s Report

Post #174 Shortlink: http://wp.me/pKrrB-2bX

Update @ June 1, 2012

James H. Scully, Jr., M.D., CEO and Medical Director of the American Psychiatric Association, has published a response to Allen Frances’ Huff Po blog of May 30:

DSM-5 Inaccuracies: Setting the Record Straight

Update @ May 30, 2012

1 Boring Old Man

reform, or accept your fate…

1 Boring Old Man | May, 30 2012

Huffington Post Blogs Allen Frances, MD

DSM-5 Costs $25 Million, Putting APA in a Financial Hole

Allen Frances | May 30, 2012

The American Psychiatric Association just reported a surprisingly large yearly deficit of $350,000. This was caused by reduced publishing profits, poor attendance at its annual meeting, rapidly declining membership, and wasteful spending on DSM-5. APA reserves are now below “the recommended amount for a non-profit (reserves equal to a year’s operating expenses).”

APA has already spent an astounding $25 million on DSM-5. I can’t imagine where all that money went. As I recall it, DSM-IV cost about $5 million, and more than half of this came from outside research grants. Even if the DSM-5 product were made of gold instead of lead, $25 million would be wildly out of proportion. The rampant disorganization of DSM-5 must have caused colossal waste. One obvious example is the $3 million spent on the useless DSM-5 field trial, with its irrelevant question, poorly conceived design, and embarrassing results…

Full commentary

On May 8, in an article for Medscape Medical News, Deborah Brauser reported:

     …Members of the task force said they hope to publish the full results [of the DSM-5 field trials] “within a month.” However, the third and final public comment period for the manual opened last week and ends on June 15. Although the entire period is 6 weeks long, the public may only have 2 weeks to comment after the publication of the field trials’ findings. DSM-5 Field Trials Generate Mixed Results

With less than three weeks to go before the stakeholder and public comment period closes, there is still no sign of a report on the DSM-5 field trials.

If the Task Force does not get a report out soon, stakeholders will be obliged to submit feedback without the benefit of data from the trials to inform their comments. Once again, this third and final stakeholder review smacks of a purely tokenistic exercise.

For the two previous draft reviews, some disorders were accompanied by PDF documents expanding on new and revised disorder descriptions and work group rationales.

For the Somatic Symptom Disorders, no updated “Disorder Descriptions” or “Rationale/Validity” documents have been published that reflect substantial revisions made to proposals and criteria between the second and third drafts. The documents as published for the second review have been taken down from the DSM-5 Development site but have not been revised and reissued.

I have twice contacted APA Media and Communications for clarification of whether the Work Group intends to publish revised documents before the end of the comment period. Evidently APA Media and Communications don’t wish to provide me with a response.

 

I will update if and when a report on the field trials emerges from the Task Force.

In the meantime, here are two public domain documents that may be of interest to APA watchers:

APA Assembly Notes Spring 2012

or download here:

http://alabamapsych.org/wp-content/uploads/2012/02/apa_assembly_notes_may_2012.pdf

APA Treasurer’s Report May 2012  [.ppt compatible PowerPoint reader required]

or view here:

https://docs.google.com/file/d/0BzWdENl1wkVSYk5aXzRZelFYUjA/edit?pli=1

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