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

[Extract]

Treasurer’s Report – David Fassler, MD

The Treasurer’s report was distributed. The Association had a deficit this past year of $350,000. There were greater than expected staff savings which did not quite offset the losses of revenue.

Publishing sales were $1M less than last year, mostly due to DSM-IV sales (because of the release soon of DSM-V). The Hawaii meeting earned $2M less than the previous meeting due to lower attendance. This is part of a trend over the past five years of lower attendance and lower revenue. It was noted in the discussion that attendance for the CME, Inc. meeting has not declined as much.

Advertising revenue and revenue from membership has been fairly steady (despite losses in the number of members). Reserves for the APA are growing slowly but are somewhat less than the recommended amount for a non-profit (reserves equal to a year’s operating expenses).

For more information: The complete treasurer’s report can be accessed here

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

or view here:

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

[Extract]

DSM-5 Update – David Kupfer, MD, Darrell Regier, MD, Glenn Martin MD

Glenn Martin reminded members that the Assembly’s DSM Committee has been very active and will be meeting in person and conference call as we move toward the November vote for approval. The near final draft of DSM-5 has been posted for final public comment through June 15, 2012. Two items were moved into the section for further study: Attenuated Psychosis and Mixed Anxiety and Depression. The Major Depressive Disorder criteria were modified to clarify the distinction between normal bereavement and a diagnosable disorder. Also added was a more extensive Personality Disorders discussion about the rationale for changes with the evidence for the reliability of dimensional measures and for the categorical diagnosis of Borderline Personality Disorder.

There was a discussion about the Autism Spectrum diagnosis. This new diagnosis was the reflects the difficulty separating the four diagnoses that were used in DSM-IV. There has been a lot of attention to the concern raised by families who fear the loss of services if there are changes in the diagnostic criteria.

By July a summary of the changes and talking points should be available. This will be distributed to district branches, and members of the organization so that they can provide accurate information to the public.

For more information: Go to the DSM-V web page for the latest information.

Full report here

Somatic Symptom Disorder could capture millions more under mental health diagnosis

Somatic Symptom Disorder criteria could capture millions more under mental health diagnosis

Post #172 Shortlink: http://wp.me/pKrrB-29B

By Suzy Chapman | Dx Revision Watch

While media and professional attention has been focused on the implications for introducing new disorders into the DSM and lowering diagnostic thresholds for existing categories, the Somatic Symptom Disorders (SSD) Work Group has been quietly redefining DSM’s Somatoform Disorders with radical proposals that could bring millions more patients under a mental health diagnosis.

The SSD Work Group is proposing to rename the Somatoform Disorders section of DSM-IV to “Somatic Symptom Disorders,” eliminate four existing  DSM-IV categories: somatization disorder, hypochondriasis, pain disorder, and undifferentiated somatoform disorder and replace them with a single new category – “Somatic Symptom Disorder.”

If approved, these proposals will license the application of a mental health diagnosis for all illnesses – whether “established general medical conditions or disorders” like diabetes, heart disease and cancer or conditions presenting with “somatic symptoms of unclear etiology” – if the clinician considers that the patient’s life has become “subsumed” with health concerns and preoccupations, or their response to distressing somatic symptoms is “excessive” or “disproportionate” or their coping strategies “maladaptive.”

 

Somatoform Disorders – disliked and dysfunctional

The SSD Work Group, under Chair, Joel E. Dimsdale, says current terminology for the Somatoform Disorders is confusing and flawed; that no-one likes these disorders and they are rarely used in clinical psychiatric practice. Primary Care physicians don’t understand the terms and patients find them demeaning and offensive [1].

The group says the terms foster mind/body dualism; that the concept of “medically unexplained” is unreliable, especially in the presence of medical illness, and cites high prevalence of presentation with medically unexplained somatic symptoms (MUS) in general medical settings – 20% in Primary Care, 40% in Specialist Care, 33-61% in Neurology; that basing a diagnosis of psychiatric disorder on MUS alone is too sensitive.

The Work Group might have considered dispensing altogether with a clutch of disliked, dysfunctional categories.

Instead, the group proposes to rebrand these disorders and assign new criteria that will capture patients with diverse illnesses, expanding application of psychiatric services, antidepressants and behavioural therapies like CBT, for the “modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors.”

 

Focus shifts from “medically unexplained” to “excessive thoughts, behaviors and feelings”

The Work Group’s proposal is to deemphasize “medically unexplained” as the central defining feature of this disorder group.

Instead, focus shifts to the patient’s cognitions – “excessive thoughts, behaviors and feelings” about the seriousness of distressing and persistent somatic (bodily) symptoms which may or may not accompany diagnosed general medical conditions – and the extent to which “illness preoccupation” is perceived to “dominate” or “subsume” the patient’s life.

“…[The SSD Work Group's] framework will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome…” [2]

“…These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met…” [3]

These are the most recent proposals for new category ”J 00 Somatic Symptom Disorder.”

Note that requirement for “at least two from the B type criteria” has been reduced to “at least one from the B type criteria” for the third release of draft proposals, presumably in order to accommodate merging the previously proposed “Simple Somatic Symptom Disorder” category into the CSSD criteria. No revised “Rationale/Validity” PDF document has been issued, but read brief revised ”Rationale” here.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368

Criteria A, B, and C must all be fulfilled to make the diagnosis:

A. Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.

B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.

(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

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months).

Specifiers
Predominant Pain (previously pain disorder). This category is reserved for individuals presenting predominantly with pain complaints who also satisfy criteria B and C of this diagnosis. Some patients with pain may better fit other psychiatric diagnoses such as adjustment disorder or psychological factors affecting a medical condition.

Severity specifiers
Somatic Symptom Disorder is a disorder characterized by persistency, symptom burden, and excessive or maladaptive response to somatic symptoms. There is a considerable range of severity. Typically, the disorder is more severe when multiple somatic symptoms are present. In addition to fulfilling criteria A and C, the following metrics may be used to rate severity:

Mild: only 1 of the B criteria fulfilled
Moderate: 2 or more B criteria fulfilled
Severe: 2 or more B criteria fulfilled plus multiple somatic symptoms

 

How are highly subjective and difficult to measure constructs like “Disproportionate and persistent thoughts about the seriousness of one’s symptoms” and “Excessive time and energy devoted to these symptoms or health concerns” to be operationalized?

By what means would a practitioner determine how much of a patient’s time spent “searching the internet looking for data” (to quote the example of the Work Group Chair) might be considered a reasonable response to chronic health concerns and what should be coded as “excessive preoccupation” or indicate that this patient’s life has become “subsumed” or “overwhelmed” by concerns about illness and symptoms?  2 gigabytes a week?  5?  10?

At the APA’s Annual Conference, earlier this month, SSD Work Group Chair, Joel E. Dimsdale, presented an update on his group’s deliberations. During the Q & A session, a questioner expressed concern that practitioners who are not psychiatric professionals or clinicians might have some difficulty interpreting the wording of the B type criteria to differentiate between negative and positive coping strategies.

Dr Dimsdale was asked to expand on how the B type criteria would be defined and by what means patients with chronic medical conditions who devote time and energy to health care strategies to try to improve their symptoms and level of functioning would be evaluated in the field by the very wide range of DSM users and how they would be differentiated from patients considered to be spending “excessive time and energy devoted to symptoms or health concerns” or perceived as having become “absorbed” by their illness.

I am not persuaded by Dr Dimsdale’s reassurances that they will try to make this “crystal clear” in the five to six pages of manual text in the process of being drafted for this disorder chapter. Nor am I reassured that these B (1), (2) and (3) criteria can be safely applied outside the optimal conditions of field trials, in settings where practitioners may not necessarily have the time or instruction for administration of diagnostic assessment tools, and where decisions to code or not to code may hang on the arbitary and subjective perceptions of DSM end-users lacking clinical training in the use of the manual text and application of criteria.

 

Implications for a diagnosis of SSD for all patient populations

Incautious, inept application of criteria resulting in a “bolt-on” psychiatric diagnosis of a “Somatic Symptom Disorder” could have far-reaching implications for all patient populations:

Application of highly subjective and difficult to measure criteria could potentially result in misdiagnosis with a mental health disorder, misapplication of an additional diagnosis of a mental health disorder or missed diagnoses through dismissal and failure to investigate new or worsening somatic symptoms.

Application of an additional diagnosis of Somatic Symptom Disorder may have implications for the types of medical investigations, tests and treatments that clinicians are prepared to consider and which insurers are prepared to fund.

Application of an additional diagnosis of Somatic Symptom Disorder may impact payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out. It may negatively influence the perceptions of agencies involved with the assessment and provision of social care, disability adaptations and workplace accommodations.

Patients prescribed psychotropic drugs for perceived unreasonable levels of “illness worry” or “excessive preoccupation” with symptoms may be placed at risk of iatrogenic disease.

For multi-system diseases like Multiple Sclerosis, Behçet’s syndrome or Systemic lupus it can take several years before a diagnosis is arrived at. In the meantime, patients with chronic, multiple somatic symptoms who are still waiting for a diagnosis would be vulnerable.

Proposals allow for the application of a diagnosis of Somatic Symptom Disorder where a parent is considered excessively concerned with a child’s symptoms [3]. Families caring for children with any chronic illness may be placed at increased risk of wrongful accusation of “over-involvement” with a child’s symptomatology.

Where a parent is perceived as encouraging maintenance of “sick role behaviour” in a child, this may provoke social services investigation or court intervention for removal of a sick child out of the home environment and into foster care or enforced in-patient “rehabilitation.” This is already happening in families with a child or young person with chronic illness, notably with Chronic fatigue syndrome or ME. It may happen more frequently with a diagnosis of a chronic childhood illness + SSD.

 

Dustbin diagnosis?

Although the Work Group is not proposing to classify Chronic fatigue syndrome, IBS and fibromyalgia, per se, within the Somatic Symptom Disorders, patients with CFS – “almost a poster child for medically unexplained symptoms as a diagnosis,” according to Dr Dimsdale’s presentation – or with fibromyalgia, irritable bowel syndrome, chronic Lyme disease, Gulf War illness, chemical injury and chemical sensitivity may be particularly vulnerable to misapplication or misdiagnosis with a mental health disorder under these SSD criteria.

There is considerable concern that this new Somatic Symptom Disorder category will provide a “dustbin diagnosis” in which to shovel the so-called “functional somatic syndromes.”

 

15% of “diagnosed illness” and 26% of “functional somatic” captured by SSD criteria

For testing reliability of CSSD criteria, three groups were studied for the field trials:

488 healthy patients; a “diagnosed illness” group of 205 patients with cancer and malignancy (some in this group were said to have severe coronary disease) and a “functional somatic” group comprising 94 people with irritable bowel and “chronic widespread pain” (a term used synonymously with fibromyalgia).

Patients in the study were required to meet one to three cognitions: Do you often worry about the possibility that you have a serious illness? Do you have the feeling that people are not taking your illness seriously enough? Is it hard for you to forget about yourself and think about all sorts of other things?

Dr Dimsdale reports that if the response was “Yes – a lot.” it was coded.

15% of the cancer and malignancy group met SSD criteria when “one of the B type criteria” was required; if the threshold was increased to “two B type criteria” about 10% met criteria for dual-diagnosis of cancer + Somatic Symptom Disorder.

For the 94 irritable bowel and “chronic widespread pain” study group, about 26% were coded when one cognition was required; 13% coded with two cognitions required.

Has the SSD Work Group produced projections for prevalence estimates and potential increase in mental health diagnoses across the entire disease landscape?

Has the group factored for the clinical and economic burden of providing CBT for modifying perceived “dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors” in patients for whom an additional diagnosis of Somatic Symptom Disorder has been coded?

 

Where’s the science?

Dr Dimsdale admits his committee has struggled from the outset with these B type criteria but feels its proposals are “a step in the right direction.”

The group reports that preliminary analysis of field trial results shows “good reliability between clinicians and good agreement between clinician rated and patient rated severity.” In the trials, CSSD achieved Kappa values of .60 (.41-.78 Confidence Interval).

Kappa reliability reflects agreement in rating by two different clinicians corrected for chance agreement – it does not mean that what they have agreed upon are valid constructs.

Radical change to the status quo needs grounding in scientifically validated constructs and a body of rigorous studies not on pet theories and papers (in some cases unpublished papers) generated by Dr Dimsdale’s work group colleagues. Where is the substantial body of independent research evidence to support the group’s proposals?*

*“...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 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.”

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

 

Where are the professionals?

During the second public review, the Somatic Symptom Disorders proposals attracted more responses than almost any other category. The SSD Work Group is aware that patients, caregivers and patient advocacy organizations have considerable concerns. But are medical and allied health professionals scrutinizing these proposals?

This is the last opportunity to submit feedback. Psychiatric and non psychiatric clinicians, primary care practitioners and specialists, allied health professionals, psychologists, counselors, social workers, lawyers, patient advocacy organizations – please look very hard at these proposals, consider their safety and the implications for an additional diagnosis of an SSD for all patient illness groups and weigh in with your comments by June 15.

Criteria and rationales for proposals for the DSM-5 Somatic Symptom Disorders categories can be found here on the DSM-5 Development site.

 

References

1 Levenson JL. The Somatoform Disorders: 6 Characters in Search of an Author. Psychiatr Clin North Am. 2011 Sep;34(3):515-24.

Dimsdale JE. Medically Unexplained Symptoms: A Treacherous Foundation for Somatoform Disorders? Psychiatr Clin North Am. 2011 Sep;34(3):511-3.

2 Dimsdale J, Creed F. DSM-V Workgroup on Somatic Symptom Disorders: the proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report. J Psychosom Res 2009;66:473–6.

3 DSM-5 Somatic Symptom Disorders Work Group Disorder Descriptions and Justification of Criteria-Somatic Symptoms documents, published May 4, 2011 for the second DSM-5 stakeholder review. (Caveat: for background to the group’s rationales only; proposals and criteria as set out in these documents have not been revised to reflect recent changes to revisions or reissued for the third review.)

     Disorder Descriptions   May 4, 2011

     Rationale/Validity Document   May 4, 2011

DSM-5 in New Scientist: Psychiatry’s new diagnostic bible is creating headaches for doctors and patients alike

DSM-5 in New Scientist: “Psychiatry’s new diagnostic bible is creating headaches for doctors and patients alike”

Post #171 Shortlink: http://wp.me/pKrrB-293

A reminder that this third and final stakeholder review and comment period is scheduled to close on June 15.

 

On May 17, APA added the following statement to the home page of the DSM-5 Development site.

APA Position Statement on DSM-5 Draft Diagnostic Criteria

The official position of the APA on draft DSM-5 diagnostic criteria is that they are not to be used for clinical or billing purposes under any circumstances. They are published on the www.dsm5.org Web site to obtain feedback on these preliminary DSM-5 Task Force proposals from mental health professionals, patients, and the general public. They have not received official reviews or approval by the APA Board of Trustees and will not be available for clinical use or billing purposes until May 2013.

Two articles in this week’s online and print editions of New Scientist. 

The first report, by Peter Aldhous, quotes Allen Frances, MD, who had chaired the development of the DSM-IV; APA research director and DSM-5 Task Force Vice Chair, Darrel Regier, and Dr Dayle Jones who is tracking DSM-5 for the American Counseling Association, on DSM-5 field trial kappa results and the relegation of Attenuated psychosis syndrome and Mixed anxiety/depression to the DSM-5 appendix.

This article is behind a paywall or a subscription to the print edition.

New Scientist 19 May 2012

Page 6 print edition

THIS WEEK/MENTAL HEALTH

Psychiatry’s new diagnostic bible is creating headaches for doctors and patients alike

Online title Trials highlight worrying flaws in psychiatry ‘bible’

Peter Aldhous

Diagnosis: uncertain

HOW reliable is reliable enough?

 

The second article, “OPINION ‘Label jars, not people”, by James Davies, is accessible on the New Scientist website without payment or print edition subscription.

New Scientist 19 May 2012

Page 7 print edition

OPINION | James Davies

James Davies is a senior lecturer in social anthropology and psychotherapy at the University of Roehampton, London

‘Label jars, not people’

“LABEL jars, not people” and “stop medicalising the normal symptoms of life” read placards, as hundreds of protesters – including former patients, academics and doctors – gathered to lobby the American Psychiatric Association’s (APA) annual meeting.

The demonstration aimed to highlight the harm the protesters believe psychiatry is perpetrating in the name of healing. One concern is that while psychiatric medications are more widely prescribed than almost any drugs in history, they often don’t work well and have debilitating side effects. Psychiatry also professes to respect human rights, while regularly treating people against their will. Finally, psychiatry keeps expanding its list of disorders without solid scientific justification…

Read full article

Two proposed changes dropped from DSM-5: Media round-up

Two proposed changes dropped from DSM-5: Media round-up

Post #169 Shortlink: http://wp.me/pKrrB-28a

Pharma Blog

Should A Federal Agency Oversee The DSM?

Ed Silverman | May 15, 2012

…Frances proposes that a federal agency ought to assume the job of developing the DSM, although he believes a new organization would be required, one that could be housed in the US Department of Health and Human Services, the Institute of Medicine or the World Health Organization. An equivalent of the FDA is needed to “mind the store,” as he puts it.

This may raise a different set of objections, of course. To what extent, for instance, should a federal agency delve deeply into determining diagnoses and definitions? On the other hand, perhaps this would remove the concerns over self-interest and conflict that have tainted the process. What do you think?

Should a Federal Agency Run The DSM?

Psych Central

An Epidemic of Mental Disorders?

John M. Grohol, PsyD, Founder & Editor-in-Chief | May 15, 2012

Psychiatric Times

COMMENTARY

Is There Really an “Epidemic” of Psychiatric Illness in the US?

Ronald W. Pies, MD | May 1, 2012

Epidemic: (from epidēmos, prevalent : epi-, epi- + dēmos, people) “…an epidemic refers to an excessive occurrence of a disease.”–from Friis & Sellers, Epidemiology for Public Health Practice, 4th ed, 2010

If claims in the non-professional media can be believed, there is a “raging epidemic of mental illness” in the US¹, if not world-wide—and, in one version of this narrative, psychiatric treatment itself is identified as the culprit. There are several formulations of the “epidemic narrative,” depending on which of psychiatry’s critics is writing. In the most radical version, it is psychiatric medication that is fueling the supposed burgeoning of mental illness, particularly depression and schizophrenia.² More subtle variants suggest that there is a “false epidemic” of some psychiatric disorders, driven by dramatically rising rates of “false positive” diagnoses.³…

Time Healthland

Mental Health

DSM 5 Could Mean 40% of College Students Are Alcoholics

Maia Szalavitz | May 14, 2012

Most college binge drinkers and drug users don’t develop lifelong problems. But new mental-health guidelines will label too many of them addicts and alcoholics…

Side Effects at Psychology Today

DSM-5 Is Diagnosed, with a Stinging Rebuke to the APA
The regrettable history of the DSM

Christopher Lane, Ph.D. | May 14, 2013

…Among the fiercest critics quoted is Mark Rapley, a clinical psychologist at the University of East London, who puts it this way: “The APA insists that psychiatry is a science. [But] real sciences do not decide on the existence and nature of the phenomena they are dealing with via a show of hands with a vested interest and pharmaceutical industry sponsorship.” Despite commending the DSM-5 authors for “reconsidering some of their most unfortunate mistakes,” clinical psychologist Peter Kinderman of the University of Liverpool adds that the manual remains, at bottom, a bad and faulty system. “The very minor revisions recently announced do not constitute the wholesale revision that is called for,” he is quoted as saying. “It would be very unfortunate if these minor changes were to be used to suggest that the task force has listened in any meaningful way to critics….”

The New American

Critics Blast Big Psychiatry for Invented and Redefined Mental Illnesses

Alex Newman | May 13, 2012

Allen J Frances lecture

Published on 11 May 2012 by tvochannel

Psychiatrist and author, Allen J. Frances, believes that mental illnesses are being over-diagnosed. In his lecture, Diagnostic Inflation: Does Everyone Have a Mental Illness?, Dr. Frances outlines why he thinks the DSM-V will lead to millions of people being mislabeled with mental disorders. His lecture was part of Mental Health Matters, an initiative of TVO in association with the Centre for Addiction and Mental Health.

Podcast http://bit.ly/KhLuhd

57:36 mins | 19 MB

As part of Mental Health Matters Week, Big Ideas presents a lecture by Allen J Frances, MD, who had chaired the DSM-IV Task Force.

Website http://a2zn.com/?p=3507

News wire

May 6, 2012 University of Toronto

Produced in collaboration with the Center for Addiction and Mental Health

Allen J Frances lecture

Diagnostic inflation. Does everyone have a mental illness?

Big Ideas – May 12 and 13 at 5 pm ET

TVO’s lecture series will present special guest speaker Dr. Allen J. Frances, who will outline why he believes that mental illnesses are being over-diagnosed these days and why he thinks the fifth and latest version of the psychiatrist’s bible, Diagnostic and Statistical Manual of Mental Disorders will lead to millions of people being mislabeled with mental disorders.

The lecture will be recorded May 6 at University of Toronto’s Hart House.

1 Boring Old Man

the dreams of our fathers I…

1 Boring Old Man |  May 12, 2012

University Diaries

“Diagnostic Exuberance”…

Margaret Soltan | May 13, 2012

BMJ News

More psychiatrists attack plans for DSM-5

BMJ 2012; 344 doi: 10.1136/bmj.e3357 (Published 11 May 2012)

Geoff Watts

The authors of the 5th edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5), due to be published in May 2013, have responded to previous criticisms of their text by announcing a further series of changes.1

But far from mollifying their critics, these concessions have served to ignite a further and still more vituperative barrage of dissent.

The list of topics under reconsideration or already subject to change can be found on the DSM-5 website.2 It includes the proposed “attenuated psychosis syndrome,” which is slated for further study, and also major depressive disorder. Here the authors have added a footnote “to …

Access to the full text of this article requires a subscription or payment

Scientific American Blogs

Why Are There No Biological Tests in Psychiatry?

By Ingrid Wickelgren | May 11, 2012 | 2

Part 5 of a 5-part series Allen Frances

New York Times

Op-Ed Contributor

Diagnosing the D.S.M.

Allen Frances | May 11, 2012

“…All mental-health disciplines need representation — not just psychiatrists but also psychologists, counselors, social workers and nurses. The broader consequences of changes should be vetted by epidemiologists, health economists and public-policy and forensic experts. Primary care doctors prescribe the majority of psychotropic medication, often carelessly, and need to contribute to the diagnostic system if they are to use it correctly. Consumers should play an important role in the review process, and field testing should occur in real life settings, not just academic centers.

Psychiatric diagnosis is simply too important to be left exclusively in the hands of psychiatrists. They will always be an essential part of the mix but should no longer be permitted to call all the shots…”

MedPage Today

DSM-5: What’s In, What’s Out

John Gever, Senior Editor, MedPage Today |  May 10, 2012

   …The final drafts are to be completed by August, then they must be approved by a scientific review committee and the task force leadership, and finally by the APA’s governing bodies.

Kupfer said the final version has to be completed by December, when it’s set to go to the printer. Its formal release is planned for the APA’s annual meeting next May in San Francisco.

Here’s a brief overview of the changes you can expect…

WHAT’S OUT
WHAT’S IN (or STILL IN)
WHAT DIDN’T MAKE IT
WHAT TO LOOK FORWARD TO

Reuters 1

Two proposed changes dropped from psychiatric guide

Julie Steenhuysen | Reuters CHICAGO | May 9, 2012

CHICAGO (Reuters) – Two proposed psychiatric diagnoses failed to make the last round of cuts in the laborious process of revising the Diagnostic and Statistical Manual of Mental Disorders — an exhaustive catalog of symptoms used by doctors to diagnose psychiatric illness.

Gone from the latest revision are “attenuated psychosis syndrome,” intended to help identify individuals at risk of full-blown psychosis, and “mixed anxiety depressive disorder”, a blend of anxiety and depression symptoms. Both performed badly on field tests and in public comments gathered by the group in its march toward the May 2013 publication deadline.

Both have been tucked into Section III of the manual — the place reserved for ideas that do not yet have enough evidence to make the cut as a full-blown diagnosis.

What has survived, despite fierce public outcry, is a change in the diagnosis of autism, which eliminates the milder diagnosis of Asperger syndrome in favor of the umbrella diagnosis of autism spectrum disorder.

But that, too, could still be altered before the final manual is published, the group says. The APA opened the final comment period for its fifth diagnostic manual known as DSM-V on May 2, and it will accumulate comments through June 15.

Dr. David Kupfer, who chairs the DSM-5 Task Force, said in a statement that the changes reflect the latest research and input from the public.

Dr. Wayne Goodman, professor and chairman of the department of psychiatry at Mount Sinai Medical Center in New York, said he’s glad the task force is responding to feedback from professionals and the public.

“I think they are trying to listen,” he said.

Goodman agrees with the decisions to drop both of the two disorders in the latest revision.

With the “mixed anxiety and depressive disorder,” he said there was a risk that it would capture a number of people who did not qualify under a diagnosis of depression or anxiety alone.

“It could lead to overdiagnosis,” Goodman said.

He said the “attenuated psychosis syndrome” diagnosis would have been useful for research purposes to help identify those at risk of psychosis, but there was a concern that it might label people who were just a bit different as mentally ill.

“The predictive value is not clear yet,” he said. “I think it’s reasonable not to codify it until we have better definition of its predictive value.”

Goodman, who worked on DSM-4, the last revision of the manual published in 1994, and is working on the Obsessive Compulsive Disorder section of the current revision of DSM-5, said the strength of the process is that it can offer a reliable way for psychiatrists across the country to identify patients with the same sorts of disorders.

The weakness, he said, is that it largely lacks biological evidence — blood tests, imaging tests and the like — that can validate these diagnoses.

“DSM-5 is a refinement of our diagnostic system, but it doesn’t add to our ability to understand the underlying illness,” he said.

Dr. Emil Coccaro, chairman of the Department of Psychiatry and Behavioral Neuroscience at the University of Chicago Medicine, said typically changes in the DSM occur because of new data.

Coccaro, who is contributing to the new section in the DSM-5 on Intermittent Explosive Disorder, said there is no question that many people aren’t convinced that some of the diagnoses need to be changed, or that there need to be new ones added.

“This also happened the last time when they did DSM-4,” he said, but that was nearly 20 years ago.

“You can keep waiting but at certain point you have to fish or cut bait and actually come out with a new edition. That is what is happening now,” he said.

Comments to the manual can be submitted at www.DSM5.org

(Reporting By Julie Steenhuysen)

Reuters 2

Experts unconvinced by changes to psychiatric guide

Kate Kelland | Reuters LONDON | May 10, 2012

(Reuters) – Many psychiatrists believe a new edition of a manual designed to help diagnose mental illness should be shelved for at least a year for further revisions, despite some modifications which eliminated two controversial diagnoses.

The new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM 5) is due out this month, the first full revision since 1994 of the renowned handbook, which is used worldwide and determines how to interpret symptoms in order to diagnose mental illnesses.

But more than 13,000 health professionals from around the world have already signed an open letter petition (at dsm5-reform.com) calling for DSM 5 to be halted and re-thought.

“Fundamentally, it remains a bad system,” said Peter Kinderman, a professor of clinical psychology at Britain’s Liverpool University.

“The very minor revisions…do not constitute the wholesale revision that is called for,” he said in an emailed comment.

The American Psychiatric Association (APA), which produces the DSM, said on Wednesday it had decided to drop two proposed diagnoses, for “attenuated psychosis syndrome” and “mixed anxiety depressive disorder”.

The former, intended to help identify people at risk of full-blown psychosis, and the latter, which suggested a blend of anxiety and depression, had been criticized as too ill-defined.

With these and other new diagnoses such as “oppositional defiant disorder” and “apathy syndrome”, experts said the draft DSM 5 could define as mentally ill millions of healthy people – ranging from shy or defiant children to grieving relatives, to people with harmless fetishes.

“SIMPLY NOT USABLE”

Robin Murray, a professor of psychiatric research at the Institute of Psychiatry at Kings College London, said it was a great relief to see the changes in the draft, particularly to the attenuated psychosis diagnosis.

“It would have done a lot of harm by diverting doctors into thinking about imagined risk of psychosis (and) it would have led to unnecessary fears among patients that they were about to go mad,” he said in a statement.

But Allen Frances, emeritus professor at Duke University in the United States, said: “This is only a first small step toward desperately needed DSM 5 reform. Numerous dangerous suggestions remain.”

Frances, who chaired a committee overseeing the DSM 4, added that the DSM 5 “is simply not usable” and should be delayed for a year “to allow for independent review, to clean up its obscure writing, and for retesting”.

Diagnosis is always controversial in psychiatry, since it defines how patients will be treated based on a cluster of symptoms, many of which occur in several different types of mental illness.

Some argue that the whole approach needs to be changed to pay more attention to individual circumstances rather than slotting them into predefined categories.

“(The DSM) is wrong in principle, based as it is on redefining a whole range of understandable reactions to life circumstances as ‘illnesses’, which then become a target for toxic medications heavily promoted by the pharmaceutical industry,” said Lucy Johnstone, a consultant clinical psychologist for the Cwm Taf Health Board in Wales.

“The DSM project cannot be justified, in principle or in practice. It must be abandoned so that we can find more humane and effective ways of responding to mental distress.”

Others, however, are pushing more for the manual to be reviewed more thoroughly to allow for more accurate diagnosis and, in theory, more appropriate treatment.

One of the proposed changes that has survived in the draft DSM 5 – despite fierce public outcry – is in autism. The new edition eliminates the milder diagnosis of Asperger syndrome in favor of the umbrella diagnosis of autism spectrum disorder.

(Editing by Myra MacDonald)

New York Times

Psychiatry Manual Drafters Back Down on Diagnoses

Benedict Carey | May 8, 2012

In a rare step, doctors on a panel revising psychiatry’s influential diagnostic manual have backed away from two controversial proposals that would have expanded the number of people identified as having psychotic or depressive disorders.

The doctors dropped two diagnoses that they ultimately concluded were not supported by the evidence: “attenuated psychosis syndrome,” proposed to identify people at risk of developing psychosis, and “mixed anxiety depressive disorder,” a hybrid of the two mood problems.

They also tweaked their proposed definition of depression to allay fears that the normal sadness people experience after the loss of a loved one, a job or a marriage would be mistaken for a mental disorder.

But the panel, appointed by the American Psychiatric Association to complete the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, or D.S.M., did not retreat from another widely criticized proposal, to streamline the definition of autism. Predictions by some experts that the new definition will sharply reduce the number of people given a diagnosis are off base, panel members said, citing evidence from a newly completed study.

Both the study and the newly announced reversals are being debated this week at the psychiatric association’s annual meeting in Philadelphia, where dozens of sessions were devoted to the D.S.M., the standard reference for mental disorders, which drives research, treatment and insurance decisions.

Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and the chairman of the task force making revisions, said the changes came in response mainly to field trials — real-world studies testing whether newly proposed diagnoses are reliable from one psychiatrist to the next — and also public commentary. “Our intent for disorders that require more evidence is that they be studied further, and that people work with the criteria” and refine them, Dr. Kupfer said…

CBS News

Panel suggests DSM-5 psychiatry manual drops two disorders, keeps new autism definition

Michelle Castillo | May 10, 2012

(CBS News) – A panel of doctors reviewing the much-debated Diagnostic and Statistical Manual of Mental Disorders 5 (DSM-5) have recommended to drop two controversial diagnoses.

The panel announced that attenuated psychosis syndrome — which identifies people at risk of developing psychosis — and mixed anxiety depressive disorder — a diagnosis which combines both anxiety and depression — should not be included in the manual’s upcoming version, the New York Times reported.

Proposed changes to autism definition may mean new diagnoses for people with Asperger’s

However, a controversial definition for autism, which will delete diagnoses for Asperger’s syndrome and pervasive developmental disorder and combine severe cases into the broader definition of autism, will remain…

MedPage Today

Autism Criteria Critics Blasted by DSM-5 Leader

John Gever, Senior Editor | May 08, 2012

PHILADELPHIA — The head of the American Psychiatric Association committee rewriting the diagnostic criteria for autism spectrum disorders took on the panel’s critics here, accusing them of bad science.

Susan Swedo, MD, of the National Institute of Mental Health, said a review released earlier this year by Yale University researchers was seriously flawed. That review triggered a wave of headlines indicating that large numbers of autism spectrum patients could lose their diagnoses and hence access to services…

Nature

Psychosis risk syndrome excluded from DSM-5

Benefits of catching psychosis early are deemed to come at too high a price.

Amy Max | May 9, 2012

A controversial category of mental illness will not be included in the revised fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the American Psychiatric Association (APA) has said. Attenuated psychosis syndrome, also known as psychosis risk syndrome, had been intended mainly for young adults who have heard whispers in their heads, viewed objects as threatening or suffered other subtly psychotic symptoms…

Scientific American Blogs

Trouble at the Heart of Psychiatry’s Revised Rule Book

Ingrid Wickelgren | May 9, 2012

Part 3 in a series

Huffington Post | Allen Frances Blog

Psychiatric Mislabeling Is Bad for Your Mental Health

Allen Frances, MD | May 9, 2012

DSM-5 Somatic Symptom Disorders: Differences between second and third draft for CSSD

DSM-5 Somatic Symptom Disorders: Differences between second and third draft for CSSD

Post #168 Shortlink: http://wp.me/pKrrB-27y

A reminder that the third and final DSM-5 comment period closes on June 15 and that I am collating submissions on this site.

Comments are open to professional and lay stakeholders. Please alert clinicians, researchers, allied health professionals, social workers, lawyers, educationalists, therapists, patient advocacy groups to these proposals.

Full proposals, criteria and rationales for the Somatic Symptom Disorders are set out in this post:

DSM-5 proposals for Somatoform Disorders revised on April 27, 2012

According to DSM-5 Task Force Chair, David Kupfer, MD, “After the comment period closes, visitors will no longer be able to submit feedback through the site, and the site will not reflect any further revisions to the draft manual in anticipation of its publication in May 2013. However, the site will remain live and viewable.”

 

Somatic Symptom Disorders Work Group proposals:

Two PDF Disorder Descriptions and Rationale/Validity Propositions PDF documents had accompanied the first and second drafts. There are no revised PDFs reflecting the most recent proposals available on the DSM-5 Development website and the documents published with the second draft have been removed.

I have asked the APA’s Media and Communications Office to clarify whether the Somatic Symptom Disorder Work Group intends to publish revised Disorder Descriptions or Rationale/Validity Propositions documents during the life of the stakeholder review period or whether these documents are being dispensed with for this third draft.

Should updated documents be added to the site during the comment period I will post links.

 

Notes on differences between the second and third draft proposals for CSSD

As with the first and second drafts, the intention remains to rename the Somatoform Disorders section to Somatic Symptom Disorders.

The proposal continues to combine the existing DSM-IV categories:

Somatization Disorder
Hypochondriasis
Undifferentiated Somatoform Disorder
Pain Disorder

into a single new category, Somatic Symptom Disorder.

For the second draft, the work group had suggested two separate diagnoses, Complex Somatic Symptom Disorder CSSD) and Simple Somatic Symptom Disorder (SSSD).

Following evaluation of the results of the DSM-5 field trials, the Somatic Symptom Disorders Work Group has decided that Simple Somatic Symptom Disorder  is “a less severe variant of CSSD.”

The Work Group now proposes merging CSSD and SSSD into a single category called Somatic Symptom Disorder (SSD) and is suggesting dropping the word “Complex” from the category term.

The latest proposed category names for the revision of the DSM-IV’s Somatoform Disorders now look like this:

Somatic Symptom Disorders

J 00 Somatic Symptom Disorder – with the option for specifying:

Mild Somatic Symptom Disorder
Moderate Somatic Symptom Disorder
Severe Somatic Symptom Disorder

J 01 Illness Anxiety Disorder |
J 02 Conversion Disorder (Functional Neurological Symptom Disorder) |
J 03 Psychological Factors Affecting Medical Condition |
J 04 Factitious Disorder |
J 05 Somatic Symptom Disorder Not Elsewhere Classified |

Revised Criteria, Rationale and Severity texts for the above can be found at the links above or on this webpage:

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

These are the criteria for J00 Somatic Symptom Disorder

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368

J 00 Somatic Symptom Disorder

Updated April-27-2012

Proposed Revision

Somatic Symptom Disorder

Criteria A, B, and C must all be fulfilled to make the diagnosis:

A. Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.

B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.

(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

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months).

Specifiers

Predominant Pain (previously pain disorder). This category is reserved for individuals presenting predominantly with pain complaints who also satisfy criteria B and C of this diagnosis. Some patients with pain may better fit other psychiatric diagnoses such as adjustment disorder or psychological factors affecting a medical condition.

These are three Severity Specifiers being proposed for SSD: Mild, Moderate, Severe.

The text on the Severity tab reads:

“Somatic Symptom Disorder is a disorder characterized by persistency, symptom burden, and excessive or maladaptive response to somatic symptoms. There is a considerable range of severity. Typically, the disorder is more severe when multiple somatic syptoms are present. In addition to fulfilling criteria A and C, the following metrics may be used to rate severity:

Mild: only 1 of the B criteria fulfilled
Moderate: 2 or more B criteria fulfilled
Severe: 2 or more B criteria fulfilled plus multiple somatic symptoms

There is a table for the PHQ Somatic Symptom Short Form (PHQ-SSS) which you can view in this file:

http://dxrevisionwatch.files.wordpress.com/2011/05/cssd-severity-short-form.png

Note that the criteria for CSSD in the previous draft, released in May 2011, had read:

“B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following must be present.”

But for the third draft, this has been reduced to

“B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.”

This is presumably to accommodate Simple Somatic Symptom Disorder within what had been the criteria for CSSD.

(Last year, for the second draft, the criteria for CSSD had required two from (1), (2) and (3) and a symptom duration of greater than 6 months, whereas the criteria for SSSD had required only one from (1), (2) and (3) and a symptom duration of greater than one month.)

 

Note also that the option for three Severity Specifiers for J00 Somatic Symptom Disorder category: Mild, Moderate, Severe, might potentially be intended to correspond to three newly proposed categories in the ICD-11 Chapter 5: Somatoform Disorders section.

In the ICD-11 Alpha drafting platform (which is a work in progress and comes with caveats), the Somatoform Disorders categories are currently proposed to be renamed to Bodily Distress Disorders. There are three new categories listed:

6R0 Mild bodily distress disorder
6R1 Moderate bodily distress disorder
6R2 Severe bodily distress disorder

These three new category suggestions have no definitions or descriptive parameters visible in the ICD-11 Alpha draft so it isn’t possible to determine at this stage what disorders these newly suggested terms might be intended to capture; nor how they would relate to the existing somatoform disorders categories that still remain listed beneath them in this section of the Alpha draft.

For comparison, this is how the corresponding section of ICD-11 categories currently displays:

ICD-11 Alpha draft:

BODILY DISTRESS DISORDERS [Formerly Somatoform Disorders]

6R0 Mild bodily distress disorder
6R1 Moderate bodily distress disorder
6R2 Severe bodily distress disorder
6R3 Somatization disorder
6R4 Undifferentiated somatoform disorder
6R5 Somatoform autonomic dysfunction
6R6 Persistent somatoform pain disorder
     6R6.1 Persistent somatoform pain disorder
     6R6.2 Chronic pain disorder with somatic and psychological factors [not in ICD-10]
6R7 Other somatoform disorders
6R8 Somatoform disorder, unspecified

Hypochondriacal disorder [ICD-10: F45.2] is currently listed in ICD-11 Chapter 5 as Illness Anxiety Disorder under 6L5 ANXIETY AND FEAR-RELATED DISORDERS > 6L5.6 Illness Anxiety Disorder.

Dissociative (Conversion disorders) [ICD-10: F44] is currently listed in ICD-11 Chapter 5 under Neurotic, stress-related and somatoform disorders > 7A5 Dissociative [conversion] disorders.

There had been discussions by the SSD and Dissociative Disorders work groups for potentially locating Conversion Disorder under the DSM-5 Dissociative Disorders section, for congruency with its location within ICD-10.

For the third draft, it appears that the groups with oversight of the revision of conversion disorder have decided that this category should be renamed to Conversion Disorder (Functional Neurological Symptom Disorder) and classified as a Somatic Symptom Disorder.

In a future post, for ease of comparison, I will post a table comparing DSM-5 third draft proposals with current listings for ICD-11.

 

Links:

1] Somatic Symptom Disorders Third draft proposals:
http://www.dsm5.org/ProposedRevision/Pages/SomaticSymptomDisorders.aspx

2] Bodily Distress Disorders” to replace “Somatoform Disorders” for ICD-11?
http://wp.me/pKrrB-1Vx

3] DSM-5 proposals for Somatoform Disorders revised on April 27, 2012
http://wp.me/pKrrB-24D

4] Submissions to SSD Work Group May 2011 are archived here:
http://wp.me/PKrrB-19a

5] Submissions to SSD Work Group May 2012 are being collated here:
http://wp.me/PKrrB-1Ol

More Kappa data from DSM-5 field trials

More Kappa data from DSM-5 field trials

Post #167 Shortlink: http://wp.me/pKrrB-27D

Further data from the DSM-5 field trials results have been released in a report by Deborah Brauser for Medscape Medical News.

You can read Ms Brauser’s report from the American Psychiatric Association’s annual conference here, though you may need to register for the site:

Medscape Medical News > Psychiatry

DSM-5 Field Trials Generate Mixed Results

Deborah Brauser | May 8, 2012

…Members of the task force said they hope to publish the full results “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.

“No previous field trial had such a sophisticated design. And it has resulted in more statistically significant data for specific disorders,” said Dr. Regier.

The current DSM-5 field trials, as well as field trials for past manuals, use Kappa score as a statistical measure of criteria reliability. A Kappa score of 1.0 was considered perfect, a score of greater than .8 was considered almost perfect, a score of .6 to .8 was considered good to very good, a score of .4 to .6 was considered moderate, a score of .2 to .4 was considered fair and could be accepted, and a score of less than .2 was considered poor.

 At adult sites, schizophrenia was shown to have a pooled Kappa score of .46. However, that is down from the .76 and .81 Kappa scores found in the DSM-IV and DSM-III, respectively, and it is less than the .79 score found in the International Classification of Diseases, Tenth Revision (ICD-10).

“It’s important to realize in some ways that the Kappa in the current field trial was from a totally different design…,” said Dr. Regier

Full report

This table has some of the results:


Reconstructed from data published by A Frances, DSM 5 in Distress, Psychology Today, 05.06.12

 

1 Boring Old Man has updated an earlier table here on his blog which incorporates additional data from the Medscape report: 

updated table
1 Boring Old Man | May 9, 2012

There are further, detailed commentaries from 1 boring old man on the DSM-5 field trial results and Kappa values here:

major depressive disorder κ=0.30?…     May 6, 2012

a fork in the road…     May 7, 2012

Village Consumed by Deadly Storm…     May 8, 2012

box scores and kappa…     May 8, 2012

Included in Ms Brauser’s report are data for “Complex somatic disorder”:

The field trials for the new proposed category Complex Somatic Symptom Disorder (CSSD) were held at Mayo. According to one of several tables within Ms Brauser’s report, the following data have been released for “Complex somatic disorder” [sic]:

Extract from DSM-5 Field Trials Generate Mixed Results, Deborah Brauser,  May 8, 2012

Disorder DSM-5 (95% CI) DSM-IV ICD-10 DSM-III
Major neurocognitive disorder .78 (.68 – .87) .66 .91
ASD .69 (.58 – .80) .59 – .85 .77 -.01
PTSD .67 (.59 – .74) .59 .76 .55*
Child ADHD .61 (.51 – .72) .59 .85 .50
Complex somatic disorder .60 (.41 – .78) .45 .42

CI, confidence interval; ASD, autism spectrum disorder; PTSD, posttraumatic stress disorder; ADHD, attention-deficit/hyperactivity disorder

*From the DSM-III-R.

CSSD is a new category for DSM-5 which redefines and replaces some, but not all of the existing DSM-IVSomatoform Disorders categories under a new rubric with a new definition and criteria.

It’s a mashup of the existing categories:

Somatization Disorder
Hypochondriasis
Undifferentiated Somatoform Disorder
Pain Disorder

Following evaluation of the field trials, this new category, Complex Somatic Symptom Disorder is now proposed to drop the “Complex” descriptor, be named Somatic Symptom Disorder and absorb Simple Somatic Symptom Disorder (SSSD) – a separate diagnosis that had been introduced for the second draft, with criteria requiring fewer symptoms than for a diagnosis of CSSD and shorter chronicity.

In order to accommodate SSSD, criteria and Severity Specifiers for CSSD have been modified since the second draft. (More on this in the next post.)

Since CSSS (or SSD, as is now proposed) did not exist as a category in DSM-IV, or in ICD-10 or DSM-III, it’s unclear and unexplained by the table what data for which existing somatoform disorders have been used for Kappa comparison for this new category with data for ICD-10 and DSM-III, and how meaningful comparison between them would be.

You can find out more about how the field trials were conducted on the DSM-5 Development site.

 

Delay in publication of field trial results and no key documents in support of proposals

Stakeholders may not get to scrutinise a report on the field trials until as late as a couple of weeks before the public comment period closes.

There are no Disorder Descriptions and Rationale/Validity Propositions PDF documents that expand on category descriptions and rationales (at least not for the Somatic Symptom Disorders) and reflect revisions to proposals between the release of the second and third draft.

Yesterday, I contacted APA’s Communications and Media Office to enquire whether the Somatic Symptom Disorders work group intends to publish either a Disorder Descriptions or Rationale/Validity Propositions document, or both, to accompany this latest draft during the life of the stakeholder review period or whether these key documents are being dispensed with for the third draft.

I’ll update if and when APA Media and Communications provides clarification.

 

Related post:

Make Yourself Heard! says DSM-5′s Kupfer – but are they listening?

Make Yourself Heard! says DSM-5′s Kupfer – but are they listening?

Make Yourself Heard! says DSM-5′s Kupfer – but are they listening?

Post #166: Shortlink: http://wp.me/pKrrB-26L

Four further commentaries from 1 boring old man on DSM-5 field trial results and Kappa values:

major depressive disorder κ=0.30?…

May 6, 2012

a fork in the road…

May 7, 2012

Village Consumed by Deadly Storm…

May 8, 2012

box scores and kappa…

May 8, 2012

MedPage Today

Most DSM-5 Revisions Pass Field Trials

John Gever, Senior Editor | May 07, 2012

“…Darrel Regier, MD, the APA’s research director, explained that the trials were intended primarily to establish reliability – that different clinicians using the diagnostic criteria set forth in the proposed revisions would reach the same diagnosis for a given patient. The key reliability measure used in the academic center trials was the so-called intraclass kappa statistic, based on concordance of the “test-retest” results for each patient. It’s calculated from a complicated formula, but the essence is that a kappa value of 0.6 to 0.8 is considered excellent, 0.4 to 0.6 is good, and 0.2 to o.4 “may be acceptable.” Scores below 0.2 are flatly unacceptable.

Kappa values for the dozens of new and revised diagnoses tested ranged from near zero to 0.78. For most common disorders, kappa values from tests conducted in the academic centers were in the “good” range:

Bipolar disorder type I: 0.54
Schizophrenia: 0.46
Schizoaffective disorder: 0.50
Mild traumatic brain injury: 0.46
Borderline personality disorder: 0.58

In the “excellent” range were autism spectrum disorder [0.69], PTSD [0.67], ADHD [0.61], and the top prizewinner, major neurocognitive disorder [better known as dementia], at 0.78. But some fared less well. Criteria for generalized anxiety disorder, for example, came in with a kappa of 0.20. Major depressive disorder in children had a kappa value of 0.29. A major surprise was the 0.32 kappa value for major depressive disorder. The criteria were virtually unchanged from the version in DSM-IV, the current version, which also underwent field trials before they were published in 1994. The kappa value in those trials was 0.59.

But a comparison is not valid, Regier told MedPage Today…”

Read full report

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

Newsflash From APA Meeting: DSM 5 Has Flunked its Reliability Tests
Needs To Be Kept Back For Another Year

Allen J. Frances, M.D. | May 6, 2012

“…The results of the DSM 5 field trials are a disgrace to the field. For context, in previous DSM’s, a diagnosis had to have a kappa reliability of about 0.6 or above to be considered acceptable. A reliability of .2-4 has always been considered completely unacceptable, not much above chance agreement…”

Reconstructed from data published by A Frances, DSM 5 in Distress, Psychology Today, 05.06.12

“…No predetermined publication date justifies business as usual in the face of these terrible Field Trial results (which are even more striking since they were obtained in academic settings with trained and skilled interviewers, highly selected patients, and no time pressure. The results in real world settings would be much lower). Reliability this low for so many diagnoses gravely undermines the credibility of DSM 5 as a basis for administrative coding, treatment selection, and clinical research…”

Read full commentary

Scientific American

Field Tests for Revised Psychiatric Guide Reveal Reliability Problems for Two Major Diagnoses

Ferris Jabr | May 6, 2012

“…The kappa for generalized anxiety disorder was about 0.2 and the kappa for major depressive disorder was about 0.3.

“…These numbers are way too low according to the APA’s own scales—and they are much lower than kappas for the disorders in previous versions of the DSM. Regier and other members of the APA emphasized that field trial methodology for the latest edition is far more rigorous than in the past and that kappas for many diagnoses in earlier editions of the DSM were likely inflated. But that doesn’t change the fact that the APA has a problem on its hands: its own data suggests that some of the updated definitions are so flawed that only a minority of psychiatrists reach the same conclusions when using them on the same patient. And the APA has limited time to do something about it…”

“…Until the APA officially publishes the results of the field trials, nobody outside the association can complete a proper analysis. What I have seen so far has convinced me that the association should anticipate even stronger criticism than it has already weathered. In fairness, the APA has made changes to the drafts of the DSM-5 based on earlier critiques. But the drafts are only open to comment for another six weeks. And so far no one outside the APA has had access to the field trial data, which I have no doubt many researchers will seize and scour. I only hope that the flaws they uncover will make the APA look again—and look closer…”

Read full report

Psychiatric News | May 04, 2012
Volume 47 Number 9 page 1a-28
American Psychiatric Association
Professional News

DSM Field Trials Providing Ample Critical Data

David J. Kupfer, M.D.

This article is part a series of commentaries by the chair of the DSM-5 Task Force, which is overseeing the manual’s development. The series will continue until the release of DSM-5 in May 2013.

As of this month, the 12-month countdown to the release of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) officially begins. While the developers of DSM-5 will continue to face several deadlines over the coming year, the progress that has been made since APA’s 2011 annual meeting has been nothing short of remarkable.

One of the most notable and talked-about recent activities of the DSM revision concerns the implementation and conclusion of the DSM-5 Field Trials, which were designed to study proposed changes to the manual…

Read on

From the same article and note that

“After the comment period closes, visitors will no longer be able to submit feedback through the site, and the site will not reflect any further revisions to the draft manual in anticipation of its publication in May 2013. However, the site will remain live and viewable.”

Make Yourself Heard!

The DSM-5 Web site (www.dsm5.org) is open to a third and final round of feedback. For six weeks, patients and their loved ones, members of the profession, and the general public can submit questions and comments via the Web site. All will be read by members of the appropriate DSM-5 work groups.

A summary of changes made to the draft diagnostic criteria since the last comment period (May-July 2011) will help guide readers to important areas for review, but visitors are encouraged to comment on any aspect of DSM-5. After the comment period closes, visitors will no longer be able to submit feedback through the site, and the site will not reflect any further revisions to the draft manual in anticipation of its publication in May 2013. However, the site will remain live and viewable.

Psychiatrists can use this important opportunity to express their opinions about proposed changes and how they may impact patient care. Since www.dsm5.org was first launched in February 2010, the work groups have discussed— and in many cases, implemented draft changes in response to—the feedback received from the site. This final comment period presents a historic opportunity for APA members to take part in the DSM-5 revision process and help impact the way in which psychiatric disorders are diagnosed and classified in the future.

David J. Kupfer, M.D., is chair of the DSM-5 Task Force and a professor of psychiatry at the University of Pittsburgh Medical Center and Western Psychiatric Institute and Clinic.

Commentary on Dr Kupfer’s report from 1 boring old man

self-evident…

I boring old man | May 6,  2012

Further commentary from 1 boring old man on DSM-5 controversy

not a good time…

1 boring old man | May 5, 2012

DSM-5 Somatic Symptoms Work Group submissions 2012: Last chance to tell SSD Work Group why it needs to ditch flawed, unsafe and unscientific proposals

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

Post #165 Shortlink: http://wp.me/pKrrB-26q

Under the guise of “eliminating stigma” and eradicating “terminology [that] enforces a dualism between psychiatric and medical conditions” the American Psychiatric Association appears hell bent on colonising the entire medical field by licensing the application of a mental health diagnosis to all medical diseases and disorders.

 

Last chance to tell the SSD Work Group why it needs to ditch its unsafe and scientifically flawed proposals

The third DSM-5 Development public review of proposals for revisions to DSM-IV categories and criteria runs through May 2 – June 15. This will be the last opportunity for stakeholders to submit feedback.

Register on the DSM-5 Development site to submit comment or use your previous user name and log in details if you submitted during the earlier reviews. For information on registration see this post from 2011.

One again, I’m collating copies of submissions to the Somatic Symptom Disorders Work Group on a dedicated page from international patient organizations, medical, allied health and other professional stakeholders, patients, advocates and professional bodies.

Any consumer groups, medical professionals, allied health professionals, social workers, lawyers etc with concerns for the Somatic Symptom Disorders proposals are welcome to forward copies of submissions for publication here.

If you are looking for submissions for the first and second public reviews, you need these pages:

Submissions to first public review (February 10 – April 20, 2010): http://wp.me/PKrrB-AQ

Submissions to second public review (May 4 – July 15, 2011): http://wp.me/PKrrB-19a

This year’s submissions are being collated here as they come to my attention:

DSM-5 SSD Work Group submissions 2012 

Shortlink for submissions page is: http://wp.me/PKrrB-1Ol

Today I am publishing UK patient and advocate, Peter Kemp’s submission to the SSD Work Group:

Submission from Peter Kemp, UK advocate

How people with M.E. and CFS (and other illnesses) could be misdiagnosed as Somatic Symptom Disorder using DSM-5

Misdiagnosis is a common occurrence by all accounts. Therefore medical definitions or criteria should not only assist diagnosis – they should positively aim to prevent or reduce misdiagnosis.

Somatic Symptom Disorder (SSD) as proposed for DSM-5 allows too many possibilities for misdiagnosis. Misdiagnosis that could have disastrous consequences. This is so readily foreseeable that this must be addressed.

Once a physician diagnoses SSD, they have effectively judged the patient incompetent to interpret their own symptoms. If the patient has an unrecognised disease that progresses, or develops a new disease and reports the new symptoms to the doctor, what will the doctor do? The patient is untrustworthy. The doctor is busy and has ‘real’ patients to treat.

It is inevitable that even patients that are correctly diagnosed with SSD will sooner or later present with actual physical disease. The diagnosis of SSD could predictably obstruct investigation and treatment of their disease. This obstruction could be directly attributed to the use of an SSD diagnosis.

SSD should not be included in DSM-5 unless specific guidance to prevent misdiagnosis are included and these have been proven effective.

Imagine a doctor with a patient presenting in the early stages of MS. MS can be difficult to diagnose. When Professor Poser reviewed 366 MS diagnoses made by board certified neurologists, he found that only 65% had been correctly diagnosed (http://www.cfids.org/archives/2000rr/2000-rr4-article03.asp ).

It can take years before the signs, symptoms and tests are clear enough to make a diagnosis (http://ms.about.com/popular.htm ). The symptoms of ‘pre-diagnosis’ MS can be very distressing and the lack of a laboratory test or firm diagnosis may add to a patient’s worries. The patient may try all sorts of strategies to try and find out about, and improve what is happening to them. They may appear to pester their GP, they may appear neurotic and irrational.

Now imagine that in accordance with DSM-5, a doctor gives them a diagnosis of the proposed SSD. The patient has an official diagnosis in their medical records that amounts to ‘hypochondriac’. What effect will that have on the patient’s chances of getting the necessary investigations as the disease progresses? How is it going to help them to cope with their distressing physical symptoms now they have been explained as psychosomatic? The time it will take for them to get a true diagnosis may be further prolonged, and the years spent waiting could be made even more harrowing because of inaccurate psychological labelling.

Therefore sensible doctors will avoid diagnosing SSD. Foolish doctors risk spending their time at professional disciplinary hearings and in court; and this still might not adequately reflect the amount of suffering their diagnosis of SSD could cause.

The rationale for SSD also states: The proposed classification for Somatic Symptom Disorders deemphasizes the central role of medically unexplained symptoms. Instead, it defines disorders on the basis of positive symptoms (distressing somatic symptoms + excessive thoughts, feelings, and behaviors in response to these symptoms).”

I believe it safe to say that ‘positive symptoms’ does not mean ‘good symptoms’ or ‘symptoms with the right attitude’. I imagine it means definite, definable, testable and maybe even measurable. But when terms like ‘distressing’ and ‘excessive’ are used to measure symptoms, the definition is not a definition. It is not even a convincing concept.

The idea is right, to base the definition on signs and symptoms that are actually present, as long as these sufficiently differentiate the condition from other conditions and do not lead to too many misdiagnoses. Unfortunately, they would predictably fail to achieve this because the definition proposed is significantly subjective.

The ‘DSM-5 Proposed Revision’ could certainly misdiagnose M.E. This would be a serious matter as M.E. is classified by the WHO ICD as a neurological illness. A doctor whose diagnosis of SSD was contradicted by a doctor that diagnosed M.E could find themselves in an awkward legal situation. The implications to the proper care of a patient, due to misdiagnosing a serious neurological illness as a neurotic illness hardly bear thinking about. Hindering necessary investigations and treatment might only be a small part of the problems this might create.

The latest proposal states:

Somatic Symptom Disorder

Criteria A, B, and C must all be fulfilled to make the diagnosis:”

“A. Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.”

The Myalgic Encephalomyelitis: International Consensus Criteria – states:
(http://www.meassociation.org.uk/?p=7173)

“A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).”

The Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS states:
(http://www.cfids-cab.org/MESA/ccpccd.pdf)

“A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7.”

Therefore every patient with M.E. or CFS or ME/CFS will present with ample distressing and disruptive symptoms to satisfy DSM-5 Somatic Symptom Disorder Part A.

“B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.

(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”

The NICE Guidelines for CFS/ME state:
(http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf )

“People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.”

Therefore even the mildest form of CFS sees persons who have often greatly reduced or stopped socializing, hobbies, sports etc.; and spend much of the time formerly devoted to these pursuits in resting and recuperating their energy to continue working.

When this level of disruptive illness goes on for more than 6 months, people will naturally and rationally become worried. They will be fearful of what is happening and what is going to happen. They will be anxious about their responsibilities, their job, their family and friend connections – everything. They may quite naturally seek help from their GP. They may be given antidepressants, sleeping medications, pain killers, etc. All these combined with a chronic illness necessitate frequent visits to their GP. They may try alternative therapies (possibly after having found what their GP offered did not help them). They may alter their diet, take nutritional supplements, go for acupuncture, homeopathy or other type of therapy.

And here is the rub; if one does not believe they are actually physically ill, their ‘thoughts, feelings and behaviours’ will certainly appear ‘excessive’. This could apply not just to CFS, but many other high impact and distressing illnesses.

The ‘Rationale’ for SSD states: “Undifferentiated Somatoform Disorder has such a low threshold that it is applicable to a very large proportion of patients attending primary care. The same low threshold issue occurs with Somatoform Disorder NOS.”

The proposed definition does not address this problem. It might actually make it worse. If doctors believe that SSD has a valid definition they may start actually using it – then God help us.

If a person with just ‘mild’ CFS is justified in being worried, justified in resting so they can keep working, justified in searching for something that will improve their health – then anyone with the illnesses mentioned could meet the criteria to satisfy DSM-5 Somatic Symptom Disorder Part B.

The only proviso is that to some extent this could depend on interpretation of the subjective aspects of part B (there may be more detailed explanations elsewhere – this essay is based on what is included here). What is ‘excessive’, ‘persistantly’, ‘disproportionate’, ‘seriousness’?*

The same ‘Rationale’ for SSD remarks on: “The lack of positive psychological features in the definition”. Unfortunately the proposed criteria attempt to define “positive psychological features” based entirely upon a physician’s subjectivity. That is not, in any sense, a definition.

This is why I believe the circular-reasoning trap constructed with SSD makes it risible. They construct a concept for SSD. They construct criteria for the concept. Chicken-egg or egg-chicken, take your pick.

The problem with this approach is that it does not IDENTIFY the psychological condition they are trying to define. SSD cannot exist only by differentiating features, this is true. Yet differentiating is an essential step. SSD must discern from other anxiety or depressive disorders. It must be discern from normal or rational anxiety, whether that anxiety is acute, chronic or fluctuating. It must discern from anxiety or depressive disorders due to neurological illness or injury. It must discern from physical illness that has not yet been diagnosed, or from physical illness for which diagnosis is complex or often delayed. It must discern from new or emerging diseases. If SSD cannot discern from these, then misdiagnosis could be a common and predictable result.

The criteria should define the disorder but they don’t. They attempt to define the criteria. The disorder should inform the criteria, but it doesn’t. The disorder is lost in a confusion of subjective terms, ‘excessive’, ‘persistantly’, ‘disproportionate’, ‘seriousness’.

The only way it can work is if someone (and here’s another trap); someone who believes that SSD exists and is defined by the DSM, decides what ‘excessive’ and ‘disproportionate’ etc., mean. Then all they have to do, is reach exactly the same conclusion that every other physician using the DSM would reach in the same position. Bingo. A diagnosis that does not mean anything other than what the ‘diagnoser’ decides that it means. And they better hope they got it right, otherwise a good lawyer will wipe the floor with them.

“C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months).”

This is either synchronicity, or they got this direct from the NICE Guidelines for ‘CFS/ME’. The NICE Guidelines ‘Making a diagnosis’ state:

“The range of presenting symptoms is wide, and fatigue and pain may not always be the prominent disabling features at initial presentation.”

“Symptoms tend to vary in intensity and type over a period of weeks or months (and evolve into what is more clearly CFS/ME with time)”

Mild CFS will satisfy DSM-5 Somatic Symptom Disorder Part C. Therefore every person with M.E. or CFS could get a diagnosis of SSD unless they can convince any psychiatrist they encounter that they are not ‘excessive’, ‘persistent’, ‘disproportionate’, or that they don’t believe they are seriously ill.

A serious anomaly might arise with SSD in both M.E. and CFS. These illnesses can start with only fatigue or just a few symptoms. Extreme fatigue and pain might be all that a patient reports. However, if the illness continues over years, some symptoms may improve whilst new ones appear. Problems such as sensory impairments, bladder and bowel problems, immune dysfunction, and a host of neurological symptoms (to name but a few) can develop.

Will the M.E. or CFS patient then be vulnerable to having their previous diagnosis ‘cancelled-out’ by a new diagnosis of SSD, because they developed too many symptoms and are worried about them?

The SSD development group have repeated previous flaws they identified as creating the need for new definitions. They have not defined anything. Yet there may be some positive outcome from their efforts. I imagine that some medical insurance company executives must be rubbing their hands together in glee, but medical negligence lawyers should be turning cartwheels.

Peter Kemp

*Editor: Accompanying the first and second release of draft proposals for the Somatic Symptom Disorders categories, two quite lengthy PDF documents that expanded on the disorder descriptions and validity/rationales were published in conjunction with the webpage Proposed Revision, Rationale and Severity texts.

For this third draft, no PDFs have been published that reflect the Work Group’s revisons since release of the second draft, last May, or set out its rationales in detail. No draft DSM-5 textual content, more comprehensive disorder descriptions or field trial evaluations are available for public scrutiny other than brief, revised Rationale texts:

Criteria for Proposed Revision J00 Somatic Symptom Disorder

Rationale text for category J00 Somatic Symptom Disorder:

Rationale

The proposed classification for Somatic Symptom Disorders deemphasizes the central role of medically unexplained symptoms. Instead, it defines disorders on the basis of positive symptoms (distressing somatic symptoms + excessive thoughts, feelings, and behaviors in response to these symptoms).
The group considers that the current DSM-IV somatoform diagnoses (Somatization Disorder, Somatoform Disorder NOS, Undifferentiated Somatoform Disorder, Hypochondriasis and the Pain Disorders) are so flawed that complete restructuring of these diagnoses is required. Change is needed as:

- The DSM-IV somatoform diagnoses are used rarely in clinical practice in most countries; the terms cause confusion among doctors and are resented by many patients.

- The criteria for DSM-IV somatization disorder are too restrictive. Undifferentiated Somatoform Disorder has such a low threshold that it is applicable to a very large proportion of patients attending primary care. The same low threshold issue occurs with Somatoform Disorder NOS.

- These diagnoses are based on “medically unexplained symptoms,” but this term is unreliable, especially in the presence of medical illness. Doctors disagree on the use of the term and patient recall of such symptoms is variable, so reliability of these diagnoses is low.

- The lack of positive psychological features in the definition of these disorders means they fail to satisfy one of the criteria for a mental disorder.

The new diagnoses of Somatic Symptom Disorder (SSD) is proposed to overcome these problems with relevant DSM-IV diagnoses.

The previous posting proposed diagnoses of Complex Somatic Symptom Disorder (CSSD) and Simple Somatic Symptom Disorder (SSSD). In this revision, we have merged the two disordes [sic], recognizing that SSSD is a less severe variant of CSSD. The work group is considering dropping the adjective “complex” from the name of the resulting disorder and is desirous of feedback.   Accessed May 4, 2012

Related material:

1] DSM-5 proposals for Somatoform Disorders revised on April 27, 2012

2] DSM-5 Development site

3] Somatic Symptom Disorders proposals

APA Press Release: DSM-5 Draft Criteria Open for Public Comment

APA Press Release: DSM-5 Draft Criteria Open for Public Comment

Post #164 Shortlink: http://wp.me/pKrrB-20I

Commentaries and media, followed by APA Press Release No. 24

(Not specific to DSM-5 third draft: Ethics complaints filed against APA.)

Psychology Today

Science Isn’t Golden
Matters of the mind and heart

Patients Harmed by Diagnosis Find Their Voices
Victims of psychiatric labeling file ethics complaints.

Paula J. Caplan, Ph.D. | April 28, 2012

The American Psychiatric Association’s 2012 Annual Meeting

This coverage is not sanctioned by, nor a part of, the American Psychiatric Association.

From Medscape Medical News > Conference News
DSM-5 Field Trial Results a Hot Topic at APA 2012 Meeting

Deborah Brauser | May 3, 2012

May 3, 2012 — Telepsychiatry, neuromodulation, the role of genetics, and updates for the upcoming Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) are just some of the hot items on the agenda of this year’s American Psychiatric Association’s 2012 Annual Meeting in Philadelphia…

(Not specific to DSM-5 third draft: Letter, AJP re DSM-5 field trial reliability and kappas.)

American Journal of Psychiatry

Letters to the Editor | May 01, 2012
Standards for DSM-5 Reliability

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

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

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

DSM 5 Rejects ‘Hebephilia’ Except for the Fine Print

Alan Frances MD | May 3, 2012

Scientific American blogs

APA Announces New Changes to Drafts of the DSM-5, Psychiatry’s New “Bible”

Ferris Jabr | May 3, 2012

Observations

Opinion, arguments & analyses from the editors of Scientific American

“…This year, the APA is holding its annual meeting from May 5 to 9 in Philadelphia, where much of the discussion will focus on the drafts of the DSM-5 and the results of “Field Trials”—dry runs of the new diagnostic criteria in clinical settings. I am attending the conference to learn more and, next week, my colleague Ingrid Wickelgren at Scientific American MIND and I will bring you a series of blogs about the DSM-5 authored by ourselves and some well-known researchers and psychiatrists. For the duration of next week, we will also publish my feature article about DSM-5 in its entirety on our website. After next week, you can still read the feature in the May/June issue of MIND. Stay tuned!”

About the Author: Ferris Jabr is an associate editor focusing on neuroscience and psychology.

1 boring old man

1 boring old man | May 3, 2012

the future of an illusion IV½…

and

the future of an illusion IV

1 boring old man | May 2, 2012

Psychology Today | DSM 5 in Distress

Wonderful News: DSM 5 Finally Begins Its Belated and Necessary Retreat
Perhaps this will be the beginning of real reform.

Alan Frances MD | May 2, 2012

MindFreedom International Newswire

Protesters, Rejecting Mental Illness Labels, Vow to “Occupy” the American Psychiatric Association Convention

MindFreedom International
Last modified: 2012-05-01T16:46:46Z
Published: Tuesday, May. 1, 2012 – 9:46 am

PHILADELPHIA, May 1, 2012 — /PRNewswire-USNewswire/ — On Saturday, May 5, 2012, as thousands of psychiatrists congregate for the American Psychiatric Association (APA) Annual Meeting, individuals with psychiatric labels and others will converge in a global campaign to oppose the APA’s proposed new edition of its “bible,” the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), scheduled for publication in 2013. Occupy the APA will include distinguished speakers from 10 a.m. to noon at Friends Center (1515 Cherry Street, Philadelphia), and a march at approximately 12:15 p.m. to the Pennsylvania Convention Center (12th and Arch Streets), where the group will protest from approximately 1 p.m. while the APA meets inside…

http://www.psychiatry.org/advocacy–newsroom/newsroom/dsm-5-draft-criteria-open-for-public-comment

Wed May 02, 2012

Contact: For Immediate Release                                  
Eve Herold, 703-907- 8640 Release No. 24
press@psych.org
Erin Connors, 703-907-8562
econnors@psych.org

DSM-5 Draft Criteria Open for Public Comment
Mental health diagnostic manual available for final online comment period

ARLINGTON, Va. (May 2, 2012) – For a third and final time, the American Psychiatric Association (APA) invites public comment on the proposed criteria for the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). DSM is the handbook used by health care professionals as an authoritative guide to the diagnosis of mental disorders.

The public comment period will last six weeks, beginning May 2 and continuing until June 15. All responses submitted via the DSM-5 website will be considered by the DSM-5 Work Groups, which are charged with assessing the latest scientific evidence and recommending the disorder definitions and criteria to be included in the manual. Nearly 10,800 comments from health care professionals, mental health advocates, families and consumers were submitted in the first two public comment periods in 2010 and 2011.

“The comments we have received over the past two years have helped sharpen our focus, not only on the strongest research and clinical evidence to support DSM-5 criteria but on the real-world implications of these changes,” said APA President John M. Oldham, M.D. “We appreciate the public’s interest and continued participation in the DSM-5 development process.”

In preparation for this final comment period, members of the DSM-5 Task Force and Work Groups have updated their proposals for diagnostic criteria. The revised criteria reflect recently published research, results from DSM-5 field testing of the criteria and public comments received since 2010.

Key changes posted for this round of public review include:

Revised proposals to place Attenuated Psychosis Syndrome and Mixed Anxiety Depressive Disorder in Section III of the manual, covering conditions that require further research before their consideration as formal disorders

 Added language to Major Depressive Disorder criteria to help differentiate between normal bereavement associated with a significant loss and a diagnosis of a mental disorder

Added rationale for changes to Personality Disorders, with field trial data now supporting the reliability of dimensional measures and the categorical diagnosis of Borderline Personality Disorder

Modified diagnostic criteria for Pedophilic Disorder to make the category more consistent with the World Health Organization’s International Classification of Diseases

Condensed diagnoses within Communication Disorders to only include Language Disorders and Speech Disorders

A proposal for a new diagnosis of Suicidal Behavioral Disorder

Modified diagnostic criteria for numerous disorders, including some in the Neurocognitive Disorders and Anxiety Disorders chapters

A proposed Cultural Formulation Interview, which includes specific questions to help clinicians more effectively assess cultural aspects of psychiatric diagnosis

A detailed list of changes made to draft proposals since July 2011 can be found on www.DSM5.org .

Revisions to DSM reflect scientific advances in the field and new knowledge gained since the last manual was published in 1994. Since 1999, more than 500 mental health and medical researchers and clinicians from the United States and abroad have been involved in the planning, review and deliberations for DSM-5. Field trials in both large academic medical centers and routine clinical practices have tested select criteria.

Feedback to the proposed diagnostic criteria can be submitted through www.DSM5.org , which will be available until the comment period ends June 15. After that, the site will remain viewable but will be closed to comments as the Work Groups and Task Force complete revisions and submit criteria for evaluation by the Scientific Review Committee and the Clinical and Public Health Committee. The Task Force will then make final recommendations to the APA Board of Trustees. The final version of DSM-5 is expected to go before the Board of Trustees in December 2012.

“As with every stage in this thorough development process, DSM-5 is benefiting from a depth of research, expertise and diverse opinion that will ultimately strengthen the final document,” noted David J. Kupfer, M.D., chair of the DSM-5 Task Force.

Publication of DSM-5 is expected in May 2013.

The American Psychiatric Association is a national medical specialty society whose physician members specialize in the diagnosis, treatment, prevention and research of mental illnesses, including substance use disorders. Visit the APA at www.psychiatry.org  and www.HealthyMinds.org .

Follow

Get every new post delivered to your Inbox.

Join 37 other followers