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

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

Post #180 Shortlink:

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

For the attention of the Somatic Symptom Disorders Work Group :

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

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

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

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

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

Margaret Parlor

June 2011

For the attention of the Somatic Symptom Disorders Work Group :

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

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

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

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

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

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

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

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

Margaret Parlor

Allen Frances: “Follow the Money”

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

Post #177 Shortlink:

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

Huffington Post Blogs | Allen Frances

Follow the Money

Allen Frances MD | June 9, 2012

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

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

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

Read full commentary on Huff Po

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:

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.”

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.

Somatic Symptom Disorder could capture millions more under mental health diagnosis

Somatic Symptom Disorder could capture millions more under mental health diagnosis

Post #172 Shortlink:

By Suzy Chapman | Dx Revision Watch

Update: My submission to the Somatic Symptom Disorder Work Group in response to the third DSM-5 draft and stakeholder review can be read here: Chapman Response to Third Draft DSM-5 SSD Proposals

May 26, 2012

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 [300.81], hypochondriasis [300.7], pain disorder*, and undifferentiated somatoform disorder [300.82] and replace them with a single new category – “Somatic Symptom Disorder.”

*In DSM-IV: Pain Disorder associated with a general medical condition (only): Psychological factors, if present, are judged to play no more than a minimal role. This is not considered a mental disorder so it is coded on Axis III with general medical conditions.See for definitions and criteria for other DSM-IV presentations of Pain disorder.  For DSM-5, it appears that all presentations of Pain disorder will be subsumed under the new SSD category.

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 the patient is devoting too much time to their symptoms and that their life has become “subsumed” by 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, MD, 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 [1,2].

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.

For DSM-5, 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…” [3]

“…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…” [4]

To meet requirements for Somatization Disorder (300.81) in DSM-IV, a considerably more rigorous criteria set needed to be fulfilled: a history of many medically unexplained symptoms before the age of thirty, resulting in treatment sought or psychosocial impairment. The diagnostic threshold was set high – a total of eight or more medically unexplained symptoms from four, specified symptom groups, with at least four pain and two gastrointestinal symptoms.

In DSM-5, the requirement for eight symptoms is dropped to just one.

One distressing symptom for at least six months duration and one “B type” cognition is all that is required to tick the box for a bolt-on diagnosis of a mental health disorder – cancer + SSD; angina + SSD; diabetes + SSD; IBS + SSD…

The most recent proposals for new category “J 00 Somatic Symptom Disorder.”

Note that the requirement for “at least two from the B type criteria” for the second draft has been reduced to “at least one from the B type criteria” for the third iteration of draft proposals. This lowering of the threshold is presumably in order to accommodate the merging of the previously proposed “Simple Somatic Symptom Disorder” category into the “Complex Somatic Symptom Disorder” category, a conflation now proposed to be renamed to “Somatic Symptom Disorder.” No revised “Disorder Description” and “Rationale/Validity” documents reflecting the changes made between draft two and draft three were issued for the third and final draft.

Ed: Update: Following closure of the third stakeholder review on June 15, 2012, proposals, criteria and rationales were frozen and the DSM-5 Development website was not updated to reflect any subsequent revisions. Proposals, criteria and rationales, as posted for the third draft in May 2012, were removed from the DSM-5 Development website on November 15, 2012 and placed behind a non public log in. Consequently, criteria as they had stood for “Somatic Symptom Disorder” at the point at which the third draft was issued can no longer be accessed but are set out on Slide 9 in this presentation, which note, does not include three, optional Severity Specifiers that were included with the third draft criteria. Since any changes to the drafts are embargoed in preparation for publication of DSM-5, in May 2013, I cannot confirm whether any changes have been made to the draft subsequent to June 15, 2012.

IASP and the Classification of Pain in ICD-11  Prof. Dr. Winfried Rief, University of Marburg, Germany

Slide 9

Rief Presentation ICD-11 Pain

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 day spent “searching the internet looking for data” (to quote an example of the SSD 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? One hour day? Two hours? Three?

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, an academic professional in the field 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; how would these patients 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 his Work Group 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 for, nor instruction in administration of diagnostic assessment tools, and where decisions to code or not to code may hang on arbitrary 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.

Patients with cancer and life threatening diseases may be reluctant to report new symptoms that might be early indicators of local recurrence, metastasis or secondary disease, for fear of attracting a diagnosis of “SSD” or of being labelled as “catastrophisers.”

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 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, education 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 or subjected to inappropriate behavioural therapies.

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.

The burden of the DSM-5 changes will fall particularly heavily upon women who are more likely to be casually dismissed when presenting with physical symptoms and more likely to receive inappropriate antidepressants and anti-anxiety medications for them.

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 for 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.” then [CSSD] 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 diagnosed illness + 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?

Did the Work Group seek opinion on the medico-legal implications of missed diagnoses?

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.”

Source: 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 the third iteration of proposals for the DSM-5 Somatic Symptom Disorders categories can be found here on the DSM-5 Development site. [Update: Proposals were removed from the DSM-5 Development website on November 15, 2012.]


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

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

3 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.

4 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 SSD Work Group’s rationales only; proposals and criteria as set out in these documents have not been revised to reflect changes to revisions or reissued for the third review.)

    Disorder Descriptions   May 4, 2011

    Rationale/Validity Document   May 4, 2011

© Copyright 2015 Suzy Chapman

DSM-5 controversies, Cosgrove-Krimsky on potential COIs, counter statement from APA’s John Oldham and APA May Annual Meeting preliminary program

DSM-5 controversies, Cosgrove and Krimsky on potential COIs, counter statement from APA’s John Oldham and APA May Annual Meeting preliminary program

Post #152 Shortlink:

Update @ March 20, 2012

Medscape Medical News > Psychiatry

APA Criticized Over DSM-5 Panel Members’ Industry Ties

Megan Brooks | March 20, 2012

March 20, 2012 — Two researchers have raised concerns that the upcoming Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) has been unduly influenced by the pharmaceutical industry, owing to financial conflicts of interest (FCOI) among DSM-5 panel members.

In an essay published in the March issue of PLoS Medicine, Lisa Cosgrove, PhD, from the Edmond J. Safra Center for Ethics, Harvard University, Cambridge, Massachusetts, and Sheldon Krimsky, PhD, from the Department of Public Health and Community Medicine, Tufts University, Boston, say the FCOI disclosure policy does not go far enough and has not been accompanied by a reduction in the conflicts of interest of DSM-5 panel members.

However, John M. Oldham, MD, President of the American Psychiatric Association (APA), “strongly” disagrees.

Read on

At DSM5 in Distress, Allen Frances, MD, who had chaired the task force for DSM-IV, writes:

According to this week’s Time magazine, the American Psychiatric Association has just recruited a new public relations spokesman  who previously worked at the Department of Defense. This is an appropriate choice for an association that substitutes a fortress mentality and  warrior bluster for substantive discussion. The article quotes him as saying: “Frances is a ‘dangerous’ man trying to undermine an earnest academic endeavor.”

Frances asks:

Am I A Dangerous Man?

No, but I do raise twelve dangerous questions

Allen Frances, M.D. | March 16, 2012

published in response to:

TIME Magazine

What Counts As Crazy?

John Cloud | Online March 14, 2012

Print edition | March 19, 2012

…The mind, in our modern conception, is an array of circuits we can manipulate with chemicals to ease, if not cure, depression, anxiety and other disorders. Drugs like Prozac have transformed how we respond to mental illness. But while this revolution has reshaped treatments, it hasn’t done much to help us diagnose what’s wrong to begin with. Instead of ordering lab tests, psychiatrists usually have to size up people using subjective descriptions of the healthy vs. the afflicted.

…Which is why the revision of a single book is roiling the world of mental health, pitting psychiatrists against one another in bitter…

Full article available to subscribers


Should APA Purge DSM Panels With Pharma Ties?

Ed Silverman | March 15, 2012

As publication of the next version of the Diagnostic and Statistical Manual of Mental Disorders, also known as DSM-5, approaches in May 2013, the so-called bible of psychiatrists is generating increasing scrutiny. The reason, of course, is that classification of various illnesses can help psychiatrists determine how to pursue treatment, which can involve prescribing medications that can ring registers for drugmakers…

Read on

Statement from John M. Oldham, M.D.

Mr Silverman’s report quotes from a statement issued on March 15 by John M. Oldham, M.D., President of the American Psychiatric Association (APA), in response to the Cosgrove and Krimsky PLoS Medicine Essay, “A Comparison of DSM-IV and DSM-5 Panel Members’ Financial Associations with Industry: A Pernicious Problem Persists.”

Read Dr Oldham’s statement here in PDF format:

    PDF statement John M Oldham, M.D., March 15, 2012

or full text below:

March 15, 2012

Statement for John M. Oldham, M.D., President of the American Psychiatric Association:

In their article, “A Comparison of DSM-IV and DSM-5 Panel Members’ Financial Associations with Industry: A Pernicious Problem Persists,” which appeared in the March issue of the journal Public Library of Science, and which ABC and other news outlets quoted, Cosgrove and Krimsky question the work of DSM-5’s volunteer Task Force and Work Group members because of publicly disclosed relationships with the pharmaceutical industry. Although we appreciate that Cosgrove and Krimsky acknowledge the commitment the American Psychiatric Association (APA) has already made to reducing potential financial conflicts of interest, we strongly disagree with their analysis and presentation of APA’s publicly available disclosure documents. Specifically, the Cosgrove-Krimsky article does not take into account the level to which DSM-5 Task Force and Work Group members have minimized or divested themselves from relationships with the pharmaceutical industry.

In 2012, 72 percent of the 153 members report no relationships with the pharmaceutical industry during the previous year. The scope of the relationships reported by the other 28 percent of member varies:

• 12 percent reported grant support only, including funding or receipt of medications for clinical trial research;

• 10 percent reported consultations including advice on the development of new compounds to improve treatments; and

• 7 percent reported receiving honoraria.

Additionally, since there were no disclosure requirements for journals, symposia or the DSM-IV Task Force at the time of the 1994 release of DSM-IV, Cosgrove and Krimsky’s comparison of DSM-IV and DSM-5 Task Force and Work Group members is not valid. In assembling the DSM-5’s Task Force and Work Groups, the APA’s Board of Trustees developed an extensive process of written disclosure of potential conflicts of interest. These disclosures are required of all professionals who participate in the development of DSM-5. An independent APA committee reviews these disclosure documents, which are updated annually or whenever a member’s financial interests change. Individuals are only permitted to serve on a work group or the Task Force if they are judged to have no significant financial interests.

The Board of Trustees’ guiding principles and disclosure policies for DSM panel members require annual disclosure of any competing interests or potentially conflicting relationships with entities that have an interest in psychiatric diagnoses and treatments. In addition, all Task Force and Work Group members agreed that, starting in 2007 and continuing for the duration of their work on DSM-5, each member’s total annual income derived from industry sources would not exceed $10,000 in any calendar year. This standard is more stringent than requirements for employees at the National Institutes of Health and for members of advisory committees for the Food and Drug Administration. And since their participation in DSM-5 began, many Task Force members have gone to greater lengths by terminating many of their industry relationships.

Potential financial conflicts of interest are serious concerns that merit careful, ongoing monitoring. The APA remains committed to reducing potential bias and conflicts of interest through our stringent guidelines.

A number of stories followed the publication of the Cosgrove and Krimsky PLoS Medicine Essay. Links for selected reports in this March 14 Dx Revision Watch post:

Cosgrove, Sheldon: 69% of DSM-5 task force members report pharmaceutical industry ties – review identifies potential COIs

Full text of Essay available here on PLoS site under “Open-access”:

A Comparison of DSM-IV and DSM-5 Panel Members’ Financial Associations with Industry: A Pernicious Problem Persists

Or open     PDF here

Long article from Sandra G. Boodman for Washington Post

Antipsychotic drugs grow more popular for patients without mental illness

Sandra G. Boodman | March 12, 2012

Adriane Fugh-Berman was stunned by the question: Two graduate students who had no symptoms of mental illness wondered if she thought they should take a powerful schizophrenia drug each had been prescribed to treat insomnia.

“It’s a total outrage,” said Fugh-Berman, a physician who is an associate professor of pharmacology at Georgetown University. “These kids needed some basic sleep [advice], like reducing their intake of caffeine and alcohol, not a highly sedating drug.”

Those Georgetown students exemplify a trend that alarms medical experts, policymakers and patient advocates: the skyrocketing increase in the off-label use of an expensive class of drugs called atypical antipsychotics. Until the past decade these 11 drugs, most approved in the 1990s, had been reserved for the approximately 3 percent of Americans with the most disabling mental illnesses, chiefly schizophrenia and bipolar disorder; more recently a few have been approved to treat severe depression.

But these days atypical antipsychotics — the most popular are Seroquel, Zyprexa and Abilify — are being prescribed by psychiatrists and primary-care doctors to treat a panoply of conditions for which they have not been approved, including anxiety, attention-deficit disorder, sleep difficulties, behavioral problems in toddlers and dementia. These new drugs account for more than 90 percent of the market and have eclipsed an older generation of antipsychotics. Two recent reports have found that youths in foster care, some less than a year old, are taking more psychotropic drugs than other children, including those with the severest forms of mental illness…

Read on

Financial Times

New autism diagnostic criteria may encourage symptomatic approach to drug use

Anusha Kambhampaty in New York, Abigail Moss in London | March 15, 2012

MedPage Today

DSM-5 Critics Pump Up the Volume

John Gever, Senior Editor | February 29, 2012

…In a conversation with MedPage Today, APA President John Oldham, MD, and DSM-5 task force chairman David Kupfer, MD, defended their handling of the revision and argued that many of the criticisms were off-base.

For starters, Kupfer said, the proposed revisions were still open to change or abandonment. The DSM-5 will assume its near-final form in June or July, he said – meaning that the APA’s annual meeting in May would provide another forum to debate the changes.

“[The proposals] are still open to revision,” he said. “The door is still very much open…”

[Ed: A third and final stakeholder review and comment period is anticipated in “May at the latest.”  Benedict Carey reported for New York Times, January 19, “The revisions are about 90 percent complete and will be final by December, according to Dr. David J. Kupfer…chairman of the task force making the revisions.”]

Read full Medpage Today article

Psychiatric News Volume 47, Number 4, February 17, 2012 publishes the preliminary schedule for the APA’s May annual meeting:


Preliminary Schedule

Part Two: William Heisel: Slap: American Psychiatric Association Targets One DSM5 Critic, Ignores Others

Part Two: William Heisel: Slap: American Psychiatric Association Targets One DSM5 Critic, Ignores Others

Post #150 Shortlink:

Update @ March 1, 2012

Additional commentary:

Neurobonkers, March 1, 2012

APA Shut Down DSM-5 Blogger


Knight Science Journal Tracker, Paul Raeburn, March 1, 2012

Psychiatrists issue legal threat, silencing blogger critical of diagnostic manual.


National Association of Science Writers


On Monday, investigative health reporter, William Heisel, published Part One of his report on the two “cease and desist” letters served to me on December 22, on behalf of the publishing arm of the American Psychiatric Association.

You can view these letters and correspondence here:

    APA correspondence


Read Part One of William Heisel’s report here:

Slap: American Psychiatric Association Pressures Brit DSM5 Blogger Suzy Chapman


Today, William Heisel continues the story:

Reporting on Health

William Heisel’s Antidote Investigating Untold Health Stories

William Heisel | February 29, 2012

Slap: American Psychiatric Association Targets One DSM5 Critic, Ignores Others

From the way the American Psychiatric Association threatened UK writer Suzy Chapman, one would think APA is fighting legal battles everywhere to protect its trademarks.

But Chapman appears to be in an elite category. Antidote wrote Monday about how APA forced Chapman to change the name and URL of her DSM-5 and ICD-11 Watch site, saying it infringed on APA’s trademark for its main guidebook, the Diagnostic and Statistical Manual of Mental Disorders (DSM).

But similar sites and uses of APA trademarks abound. Why hasn’t the APA gone after them?

Read on


Related posts:

Earlier commentaries:

Media coverage: American Psychiatric Association (APA) “cease and desist” v DSM-5 Watch website; Legal information and resources for bloggers and site owners

Is DSM 5 A Public Trust Or An APA Cash Cow? Commercialism And Censorship Trump Concern For Quality by Allen Frances APA forces domain name change for DSM-5 and ICD-11 Watch site

Pity the poor American Psychiatric Association, Parts 1 and 2: Gary Greenberg

DSM 5 Censorship Fails: Support From Professionals and Patients Saves Free Speech by Allen Frances

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