Final day: Submissions to third DSM-5 stakeholder review

June 15, 2012 by

Final day: Submissions to third DSM-5 stakeholder review

Post #183 Shortlink: http://wp.me/pKrrB-2fn

The third and final stakeholder review is scheduled to close today, Friday, June 15.

I am collating copies of submissions on these pages.

A copy of my own comment is published below in text and PDF format. If you are unable to submit your own letter or short of time, please consider endorsing Mary Dimmock’s submission or one of the other submissions or one from last year with a note to say that although the criteria have been revised since last year, the underlying concerns remain.

 

Submission from UK advocate Suzy Chapman

Full text in PDF:     Chapman DSM-5 submission 2012

For the attention of the Somatic Symptom Disorders Work Group: Chair Joel E. Dimsdale, M.D.

Submitted by Suzy Chapman, advocate and parent/carer of young adult with chronic illness.
Website owner of https://dxrevisionwatch.wordpress.com formerly http://dsm5watch.wordpress.com

Submission in response to J 00 Somatic Symptom Disorder

I note that at June 14, APA has published no report on the results of the DSM-5 field trials. The majority of stakeholders wishing to provide feedback on this third release of draft proposals have no information on the make-up of the SSD study groups, the numbers studied within each of the three arms or the resulting data.

  • Stakeholders have been obliged to submit comment without the benefit of scrutiny of field trial results to inform their submissions. This is not acceptable.

For the first and second release of draft proposals, a 7 page “Disorders Description” document and a 14 page “Rationale/Validity Propositions/Justification of Criteria” document accompanied proposals and expanded on the website Proposals, Criteria, Rationale and Severity content for this category section. In the case of the latter, this included five pages of references to published and unpublished papers, including a number of papers authored or co-authored by members of the SSD Work Group. With the release of this third and final draft, no updated versions of these two documents were published that reflect significant revisions to SSD criteria between the second and third draft. The unrevised versions have been removed from the website.

  • Stakeholders have been denied access to the more expansive rationales and validity propositions set out within these two documents, the research papers that have been relied on and more detailed explanations for the revisions made to criteria between the second and third iterations in response to field trial results and internal/external input. If the Work Group considered these documents essential background information for the first and second drafts it is unreasonable not to have provided stakeholders with updated versions for this third draft.

The “Rationale/Validity Propositions/Justification of Criteria” document (as published May 4, 2011, for the second public review) states:

“…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.”

Continued on Page 2

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 , , , , , , , , ,

Patient submissions to third and final DSM-5 stakeholder review

June 14, 2012 by

Patient submissions to third and final DSM-5 stakeholder review

Post #182 Shortlink: http://wp.me/pKrrB-2f5

This third and final stakeholder review is scheduled to close on Friday. If an extension is announced I will update.

As with the two previous draft reviews, in 2010 and 2011, 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. Submissions will be published subject to review and posted in PDF format if more than a few pages long.

The most recent submission received is from “US patient 1”. This is a detailed response which I am publishing in both text and PDF format. (Note that as far as I can see submissions can only be uploaded to the DSM-5 Development site using the RT or html text editor and not as file attachments.)

Submission from US patient 1 to J 00 SSD and J 02 Conversion Disorder (FNSD)

Full text in PDF:    DSM-5 submission

To: DSM-5 Task Force, Somatic Symptom Disorders Work Group
From: _______
Re: Response on the Proposals for Somatic Symptom Disorder and Conversion Disorder
Date: June 12, 2012

The DSM-5 Task Force has thus far failed to address the conceptual and practical problems inherent in DSM-IV somatoform disease constructs. Specifically, its proposals for Somatic Symptom Disorder and Conversion Disorder are actually more flawed than their equivalents in DSM-IV. The criteria for these two diagnoses rely excessively upon purely subjective judgments by clinicians and on the extent of a clinician’s awareness of known diseases, and lack the specificity required of valid diagnostic constructs.

To understand just how strongly subjectivity of clinical interpretation can impact diagnostic outcome when using somatoform disorder criteria on a disease with unknown etiology, it is instructive to consider in some detail Johnson et al’s “Assessing Somatization Disorder in Chronic Fatigue Syndrome”1, a study on the reliability of DSM-III-R somatization disorder (SD) criteria and related instruments when applied to patients with chronic fatigue syndrome (CFS). As the DSM-III-R SD diagnostic construct was less subjective and had greater specificity in terms of symptom presentation than the proposed SSD criteria, a careful examination of its flaws, as demonstrated by this study, offers a sobering perspective on real world application of SSD criteria.

CFS is a somatic disease of unestablished etiology; the United States Centers for Disease Control has stated that “Research shows that CFS is not a form of psychiatric illness” and that an essential criterion for its diagnosis is “severe chronic fatigue of 6 months or longer that is not explained by any medical or psychiatric diagnosis”. Nevertheless, in spite of such evidence, an opinion persists in the medical community that CFS is in some way a psychosomatic illness, an opinion which can easily influence clinicians in their diagnoses of patients who satisfy CFS criteria. Thus, as Johnson et al noted: “Whether or not symptoms of CFS are considered medically caused will strongly affect the incidence of SD within the CFS population…If the examiner recognizes that the patient’s CFS symptoms indicate a physical illness, the diagnosis of SD may not be made. Conversely, if the examiner does not consider CFS a medical illness, the patient’s symptom endorsement may lead to the diagnosis of SD.”

To begin with, Johnson et al discussed the problems with the DSM-III-R criteria for somatization disorder:

“According to DSM-III-R .. the diagnosis of somatization disorder (SD) requires a person to present with at least 13 symptoms for which no significant organic pathology can be found. The symptoms must have caused the person to take medication, to see a physician, or to have altered her/his lifestyle. The disorder begins before the age of 30 and has a chronic but fluctuating course. However, the diagnosis of SD is extremely problematic in terms of its validity because it involves a series of judgments that can be arbitrary and subjective […] Specifically, the interviewer must decide if the symptom reported is attributable to an identifiable medical illness. Although such judgments are extremely difficult to make uniformly, the influence of bias introduced by the interviewer’s orientation on the prevalence of SD has not been adequately addressed.”

They noted the high variation between the estimates of SD prevalence in CFS patient cohorts reported by previous studies and concluded that it was “in itself indicative of the problem in defining SD”. They further pointed out that “The difficulty in distinguishing among somatic symptoms that are psychiatric vs. organic in origin can result in overdiagnosis of SD in medical illness, particularly chronic illness”, as they had observed in several studies by other authors on somatization in CFS.

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 , , , , , , , ,

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 , , , , , , , , ,

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

June 12, 2012 by

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

Filed under Action for M.E., American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 third draft, Somatic Symptom Disorder, Somatoform Disorders 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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