Final 2 days: Submissions to third DSM-5 stakeholder review

June 13, 2012 by

 

Final 2 days for Submissions to third DSM-5 stakeholder review

Post #181 Shortlink: http://wp.me/pKrrB-2eX

There are only Thursday and Friday left before this third and final stakeholder review of proposals for DSM-5 categories and diagnostic criteria closes.

APA has failed to publish “full results” of its field trials – obliging professional, patient and public stakeholders to submit comment without the benefit of scrutinizing field trial data. That’s another APA schedule missed.

If any extension to the comment period is announced I will update.

The DSM-5 Development site has been slow to load, today, probably due to volume of traffic for both US and UK visitors and in some cases, not loading at all. If you are having problems try pulling up a page other than the Home Page and allow several minutes to load.

As with the two previous reviews, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site, subject to review, and posted in PDF format if more than a few pages long.

The most recent published submission is from “Joss”:

Submission from UK patient, Joss

I am writing to voice my concerns concerning the proposed category of Somatic Symptom Disorder.

Theoreticians of illness classification such as yourselves should be aware of the actual harm that could be caused to real people should this category be included in the DSM.

I would like to focus your minds with a real world example of how such a label might cause actual harm:

In 1998 I hurt my back. A scan showed a herniated disc but no further action was considered necessary. For the next three years my life was devastated by pain, I had bedsores and was pissing myself in bed from being unable to move. I believe that this was not taken seriously because I already had a pre-existing diagnosis of ME/CFS. The disbelief around my ME/CFS had already caused me problems obtaining the necessary help from medical services.

I believe that doctors thought I was ‘catastrophising’ and that had the SSD label been available to them they would have been able to categorise me as having:

‘Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns’

and, further, apply the three following highly subjective statements to me:

(1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.

(2) Persistently high level of anxiety about health or symptoms

(3) Excessive time and energy devoted to these symptoms or health concerns

I had CBT via a pain clinic but things got progressively worse. The CBT was of no help because it can not mend discs. I was, I admit, by this time feeling a tad suicidal because nobody would listen to me or believe that things were as bad as they were.

In 2001 I called an ambulance and went to the emergency department. The doctor was fine until he consulted my notes and saw I had an ME/CFS diagnosis. I was given morphine and they wanted to send me home.

It was only by refusing to leave that I gained admission to the hospital where a further scan was undertaken and it was found that a piece of disc had got in to my spinal canal and was pressing on my spinal cord. The next day I was in surgery and told that I would have been paralysed for life without it.

I would like you to reflect on how much worse the situation might have been if I had also been labelled as having SSD and on what happens when the SSD label is wrongly applied.

If someone is very ill and in pain is it not normal to feel distressed? How much distress is too much? Who decides what the right amount of distress for any given situation is?

What does ‘disproportionate’ mean in such a situation?

Is feeling anxious about such things not simply a normal and sane reaction to such circumstances?

And as for ‘excessive time and energy’ – well being bedridden and unable to move for whatever reason makes it a little hard to think of much else for much of the time.

To take such a lack of understanding of subjective experience of severe physical symptoms and construct a spurious and vague illness category from them is not only philosophically flawed it is dangerous to those who may be labelled in such a way.

This definition is far too vague and leaves far too much room for definitional ‘creep’, misinterpretation, misuse and even abuse.

It could certainly lead to possible missed diagnosis should a patient be placed in the SSD group and then continually disbelieved because of the label and left with no hope of getting to the bottom of the problem. To leave people without hope can only be called cruel

I am concerned that many illnesses such as ME/CFS, fibromyalgia and pain syndromes, and back problems which are often hard to diagnose and treat and can be a considerable burden to those who have to live with them will get drawn into the SSD basket and that, once there, patients will lose all hope of receiving any appropriate bio-medical treatment.

I am sure you are aware that medicine does move forward and that many illnesses once defined as psychiatric or psychological or simply beyond the reach of scientific clarity are now no longer considered ‘medically unexplained’. Just because there is currently no ‘medical’ explanation for a specific symptom and no understanding of how somebody might experience that symptom does not automatically render it a problem for psychology or psychiatry.

Filed under American Psychiatric Association (APA), DSM revision process, DSM-5 draft proposals, DSM-5 field trials, DSM-5 third draft, Functional Somatic Syndrome (FSS), Kappa, MUS, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

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

June 12, 2012 by

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

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 field trials, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

DSM-5 controversy: Lane on “SAD”, Frances Follows the Money, Spitzer et al on Kappa reliability

June 12, 2012 by

DSM-5 controversy round up:

Lane on “SAD”; Frances “Follows the Money”; Spitzer et al on Kappa reliability; A Closer Look at Pending Changes to the Future of Psychiatric Diagnosis June issue The Journal of Nervous and Mental Disease

Post #178 Shortlink: http://wp.me/pKrrB-2em

Side Effects at Psychology Today

From quirky to serious, trends in psychology and psychiatry.

Christopher Lane, Ph.D. | June 11, 2012

Naming an Ailment: The Case of Social Anxiety Disorder”

“Social phobia” vs. “Social anxiety disorder”: What’s in a name?

…“Using data collected from a telephone survey of residents of New York State,” the letter writers continue, “we investigated whether the disorder name affects the perceived need for treatment. Random-digit dialing was used to obtain phone numbers … In total, 806 people participated.”

“Respondents heard a brief vignette describing a person who experiences discomfort in social situations and often avoids social events. These symptoms were labeled as either social phobia or social anxiety disorder, and respondents indicated whether the person should seek mental health treatment.”

The results are dubious to say the least…

Read full commentary

Psychology Today

DSM 5 in Distress | Allen Frances

Follow The Money
APA puts publishing profits above public trust

Allen Frances MD | June 11, 2012

…APA treats DSM-5 like a valuable publishing property, not as a public trust that importantly impacts on people’s lives and public policy. It is excellent at protecting its “intellectual property” with confidentiality agreements and at protecting its trademark and copyright with bullying threats of law suits. But APA has been sadly incompetent and wildly profligate in the day-to-day work of actually producing a safe and scientifically sound DSM-5.

Dr Scully is asking us to believe ten very unbelievable things. My view – if you want to understand why an unreliable and unsafe DSM-5 is being rushed prematurely to market – is to “follow the money…”

Read full commentary at DSM-5 in Distress

Newswire

http://ajp.psychiatryonline.org/article.aspx?articleid=1109031

The American Journal of Psychiatry, VOL. 169, No. 5

Letters to the Editor | May 01, 2012

Standards for DSM-5 Reliability

Robert L. Spitzer, M.D.; Janet B.W. Williams, Ph.D.; Jean Endicott, Ph.D.
Princeton, N.J. New York City

Am J Psychiatry 2012;169:537-537. 10.1176/appi.ajp.2012.12010083

TO THE EDITOR: In the January issue of the Journal, Helena Chmura Kraemer, Ph.D., and colleagues (1) ask, in anticipation of the results of the DSM-5 field trial reliability study, how much reliability is reasonable to expect. They argue that standards for interpreting kappa reliability, which have been widely accepted by psychiatric researchers, are unrealistically high…

A Closer Look at Pending Changes to the Future of Psychiatric Diagnosis

Released: 6/7/2012 9:00 AM EDT
Source: Wolters Kluwer Health: Lippincott Williams & Wilkins

Articles Have Potential to Affect Final DSM-5 Standards as Public comment Period Ends

Newswise — New York, NY (June 7, 2012) – The June issue of The Journal of Nervous and Mental Disease (JNMD) features a special section focused on the impending release of the revised Diagnostic and Statistical Manual of Mental Disorders (DSM-5), an update to psychiatric diagnosis standards. JNMD is published by Lippincott Williams & Wilkins, part of Wolters Kluwer Health.

The Journal of Nervous and Mental Disease Editor-in-Chief John A. Talbott, MD, (a past APA president and DSM-III collaborator) comments in his editorial, “The timing of this special section on DSM-5, therefore, is particularly auspicious because it provides the potential for these articles to affect the final DSM-5 decisions.” The DSM-5 manual, currently scheduled for publication in May 2013, is going through its final public comment period through June 15, 2012.

Many articles within the section present criticisms of DSM-5 proposals. Specifically, several authors worry that the new DSM-5 standards may open up more opportunities for false-positives – a doctor diagnosing a condition when it is not present, or providing medication when it is not needed.

• “Diagnostic Inflation: Causes and Suggested Cure” by Batstra and Frances displays the authors’ concern that the proposed changes to DSM-5 will result in diagnostic inflation and inappropriate use of medication. They suggest “stepped diagnosis,” which includes a watch-and-wait period before beginning medication, to combat false-positives.

• In “Recurrence of Bereavement-Related Depression: Evidence for the Validity of the DSM-IV Bereavement Exclusion From the Epidemiological Catchment Area Study,” Wakefield and Schmitz contend that the DSM-5 proposal to remove the bereavement exclusion from the definition of a major depressive episode would cause those who are experiencing normal grief after the death of a loved one to be mislabeled as clinically depressed.

Other articles respond to DSM-5 proposals to include new disorders and diagnostic constructs. For example, DSM-5 proposes to reclassify pathological gambling as a behavioral addiction, which may pave the way for other excessive behaviors to be included in this construct in the future.

• Mihordin takes a look at the potential consequences of this change in his article, “Behavioral Addiction V Quo Vadis?” in which he presents hypothetical criteria for the diagnosis of pathological model railroading disorder.

• Good and Burstein respond to the DSM-5 proposal to include a hebephilic subtype to the diagnosis of pedophilia in “Hebephilia and the Construction of a Fictitious Diagnosis”. Additionally, Wakefield examines two DSM-5 proposals on classifying pathological forms of grief as mental disorders in “Should Prolonged Grief Be Reclassified as a Mental Disorder in DSM-5? Reconsidering the Empirical and Conceptual Arguments for Complicated Grief Disorder.”

Included in the special section, “Psychotropic Marketing Practices and Problems: Implication for DSM-5” by Raven and Perry looks at how certain aspects of DSM-5 could be used by the pharmaceutical industry as marketing tools, especially with a wider customer base resulting from false-positive patients. In “A Critique of the DSM-5 Field Trials,” Jones examines problems that may have compromised the usefulness of the DSM-5 field trials.

It is important to note that the articles in the special section of JNMD were written at various points since February 2010 based on the criteria sets posted on the DSM-5 website. Many of these criteria sets have been updated since their initial posting. “Thus, the critiques of certain proposals contained in these articles may no longer be fully relevant to what is actually being proposed for DSM-5,” Dr. Talbott states in his editorial. Visit the DSM-5 website at http://www.dsm5.org/  for the most accurate information on what is being considered for inclusion in DSM-5.

# # #

About The Journal of Nervous and Mental Disease
Founded in 1874, The Journal of Nervous and Mental Disease is the world’s oldest, continuously published independent scientific monthly in the field of human behavior. Articles cover theory, etiology, therapy, social impact of illness, and research methods

Filed under Allen Frances, American Psychiatric Association (APA), Christopher Lane, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5 draft proposals, DSM-5 field trials, DSM-5 in the media, DSM-5 third draft, Robert Spitzer Tagged with , , , , , , , , ,

Allen Frances: “Follow the Money”

June 10, 2012 by

Allen Frances writing on Huffington Post: “Follow the Money”

Post #177 Shortlink: http://wp.me/pKrrB-2e3

Allen Frances, who had oversight of the development of DSM-IV, responds to DSM-5 Inaccuracies: Setting the Record Straight by James H Skully, CEO and Medical Director to the American Psychiatric Association.

Huffington Post Blogs | Allen Frances

Follow the Money

Allen Frances MD | June 9, 2012

…The APA budget depends heavily on the huge publishing profits generated by its DSM monopoly. APA needs the money badly. It is losing paying members; other sources of funding are also on a downward trend; and its budget projections require a big May 2013 injection of DSM-5 cash…

…APA treats DSM-5 like a valuable publishing property, not as a public trust that importantly impacts on people’s lives and public policy. It is excellent at protecting its “intellectual property” with confidentiality agreements and at protecting its trademark and copyright with bullying threats of law suits. But APA has been sadly incompetent and wildly profligate in the day-to-day work of actually producing a safe and scientifically sound DSM-5.

Dr Scully is asking us to believe ten very unbelievable things. My view – if you want to understand why an unreliable and unsafe DSM-5 is being rushed prematurely to market – is to “follow the money…”

Read full commentary on Huff Po

Filed under Allen Frances, American Psychiatric Association (APA), DSM revision process, DSM-5, DSM-5 draft proposals, DSM-5 field trials, DSM-5 in the media, DSM-5 third draft, DSM-V, SLAPP suit Tagged with , , , , , , , , ,

DSM-5 round-up: Lane on “DSM-5 Facts” site, Frances on DSM-5, Kupfer on Frances

June 5, 2012 by

DSM-5 round-up: Lane on new “DSM-5 Facts” site, Frances on DSM-5, Kupfer on Frances

Post #176 Shortlink: http://wp.me/pKrrB-2cQ

What we were waiting for were the “full results” of the reliability data from the DSM-5 field trials.

What we got was a public relations sticking plaster.

Christopher Lane reported in Side Effects on the American Psychiatric Association’s new platform DSM-5 Facts – a website launched, last week, to “correct the record, highlight key omissions – and provide essential perspective so that the public has a complete and accurate view…“

Side Effects

Christopher Lane, Ph.D. | June 4, 2012

The APA’s PR Problem
Why is the American Psychiatric Association hiring a PR company to market DSM-5?

As the news tumbled out last week that the American Psychiatric Association had hired GYMR, an expensive PR company, to help the organization “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” (services that GYMR brags about in its mission statement), it became clearer than ever that the APA has more than an image-problem with DSM-5…

Read on

In a long interview with Allen Frances, Stephen M. Strakowski asks: What’s wrong with DSM-5 and what needs to be done to put it right?

Medscape Psychiatry

What’s Wrong With DSM-5?

Stephen M. Strakowski, MD; Allen J. Frances, MD | June 1, 2012

Addressing Prescription Drug Abuse: Introduction
The Biggest Problems With DSM-5?
What Would Dr. Frances Do?
A Safe, Credible DSM-5 by 2013?

…The reliability-test results for stage 1 show that DSM-5 badly flunked and that stage 2 is desperately needed. The leadership lowered expectations with statements indicating that they are willing to accept diagnostic agreements far below historical levels and include proposals achieving diagnostic agreements that are little better than chance. This is simply not acceptable and should not be accepted…

…it is discouraging that DSM-5 has not accepted the need for external review, is going forward with poorly written and unreliable criteria sets, and still contains so many unsafe and scientifically unsound proposals. It remains to be seen whether DSM-5 will be responsive to what is certain to be increasing external pressure to trim its sails and improve its quality. If it attempts to hang tough, I think DSM-5 will no longer be used much (if at all) overseas and will also lose much of its following in the United States…

Task Force Chair, David J. Kupfer, MD, responds:

Medscape Psychiatry

Dr. Kupfer Defends DSM-5

David J. Kupfer, MD | June 1, 2012

Editor’s Note:
In a recent Medscape interview with Dr. Stephen Strakowski, DSM-IV Task Force Chair Dr. Allen J. Frances expressed serious concerns about a number of proposals being considered for inclusion in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), scheduled for release in May 2013. Below, DSM-5 Task Force Chair Dr. David Kupfer defends the proposed revision.

A DSM-5 Defense
Will DSM-5 Inflate Prevalence?

A third Medscape report from the APA’s Annual Conference by Nassir Ghaemi, MD:

Medscape Psychiatry

DSM-5: Finding a Middle Ground

Nassir Ghaemi, MD | June 1, 2012

Professor of Psychiatry, Tufts University School of Medicine; Director, Mood Disorders Program, Psychiatry Department, Tufts Medical Center, Boston, Massachusetts

DSM-5: Validity vs Reliability
But DSM-IV Has Limitations, Too

Two more commentaries from 1 Boring Old Man on DSM-5 process and field trial Kappa results:

the APA Trustees must intervene in the DSM-5…

1 Boring Old Man | June 4, 2012

and will…

1 Boring Old Man | June 3, 2012

Filed under Allen Frances, American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, David Kupfer, DSM revision process, DSM-5, DSM-5 draft proposals, DSM-5 field trials, DSM-5 in the media, DSM-5 third draft Tagged with , , , , , , , , ,

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

May 31, 2012 by

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.

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 field trials, DSM-5 in the media, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

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