Dialoguing with a task force revising the DSM

The event itself was billed as “an update briefing call for mental health consumer and family organizations on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders.” Recently I had the honor of being one of 3 people invited from a certain organization responding to a conference call regarding the slated 2013 publication of the DSM-V. The organization was MindFreedom International, and the three people attending this event from that organization were David W. Oaks, director of MindFreedom International, Paula J. Caplan, a psychologist, author, and speaker, and yours truly.

We realized from the beginning that there was not likely to be much real discussion allowed on this call. David suggested each person draw up a number of concerns that we could take to the task force members. Paula offered to incorporate those concerns into a document, a more comprehensive list. She titled the paper we sent around Questions and concerns to address to May 2, 2011 conference call about DSM-V.

This questions and concerns document, 2 and ½ pages long, was divided in 2 parts Questions and Recommendations about Procedures, and Questions and Recommendations about Content. The first part addressed the process by which the DSM was being revised, and the second part dealt with the disorder categories being added to, and deleted from, that manual.

Among the highlights of this document were Item Number 5 Questions and Recommendations about Procedures.

Given the vast amount of harm caused by use of DSM categories, as well as to the widely-believed but mistaken assumption that some body such as the FDA must be regulating the use of psychiatric diagnosis, would you be willing to join an initiative to hold Congressional Hearings about psychiatric diagnosis? In such hearings, both those who feel they have been helped and those who feel they have been harmed could speak, and a national conversation about ways to minimize the harm could begin.

Item Number 1 in Questions and Recommendations on Content also went straight to the point. How much science, after all, is involved in voting “mental disorders” into existence as phenomenon and epidemic?

In light of the impression the public has that the DSM-V is solidly grounded in high-quality scientific research, what steps do you plan to take to disclose to therapists and the public the extent to which it actually is not grounded in good science?

Item Number 2 was also interesting. We happen to have a Bill of Rights attached to our US Constitution, even if those rights aren’t always observed and protected. It certainly wouldn’t hurt to have the DSM acknowledge those rights as well. I didn’t get the idea though that these task force members were particularly keen on seeing those rights protected.

Given the power and influence of the DSM, will DSM-V include alerts to therapists about the many kinds of harm that can result solely from receiving just about any psychiatric diagnosis, and will it include concrete suggestions for ways that therapists can help minimize the harm that can result? As a start, we suggest that you include the following, Black Box warning in the next edition:

“”The publishers of DSM do not intend this manual to be the basis for any professional or legal decision that may limit the liberty, or discriminate against, any individual who receives a diagnosis of a psychiatric disorder.”

Among the list of “disorders” we wouldn’t have voted into the manual there was also a “disorder” that we would like to see included. This was the (A) recommendation under Item number 5, (B) through (D) pertaining to thoroughly dispensable “disorder” label candidates.

(A) Introduce a category called Toxic Psychiatric Drug Syndrome to provide for systematic documentation of such effects and, in the first instance, to call attention to the negative effects that psychotropic drugs often have.

The three DSM-V revision task force members leading this call were Jim McNulty, public representative of the Task Force and a past president of the pharmaceutical industry front group NAMI, David J. Kupfer, psychiatrist and chair of the Task Force, and Darrel A. Regier, psychiatrist and vice-chair of the Task Force. Mostly this was a matter of Darrel Regier and Jim McNulty speaking while the participants passively listened.

Any apprehensions we had going into this thing must have been borne out by Monday’s call. Mostly it was a matter of the DSM Task Force members taking pains to paint a rosy picture of the revisions being made to the DSM. The changes being made were linked to the latest in scientific research. The biased and unsound nature of this research was not something the task force members wanted to impress upon us. The glories of the DSM-V were expounded, and then the call was turned over to the participating organization members for Q & A.

After the lectures we had received, there was only enough time left in the teleconference to hear from 6 participants. Paula and David were both able to get their questions into the task force members while I was not able to do so. Due to this circumstance, I was grateful for Paula’s list. Unfortunately, I felt that there wasn’t as much dialogue in this event as there might have been. In fact, it was mostly comprised of monologue from the task force members. I don’t really think the suggestions of the participants were of primary concern to the task force members who arranged the event. My feeling was that this was mostly a PR ploy designed to give the appearance of dialogue. My fingers are still crossed on this subject, but I doubt the task force members are likely to spend as much time sweating over the details of the document we sent them as perhaps they should spend.

Related link: The Inside Story of Our Conference Call with the DSM-5 Heads

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One Response

  1. Erasing the interface between psychiatry and medicine

    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 potential application of a mental health diagnosis to all medical diseases and disorders.

    While the media has focussed on the implications for introducing new additions into the DSM and broadening definitions of existing diagnostic criteria, the DSM-5 “Somatic Symptom Disorders” Work Group has been quietly redefining DSM-IV’s “Somatoform Disorders” categories with proposals, that if approved, would legitimise the application of an additional diagnosis of “Somatic Symptom Disorder” to all medical diseases and disorders.

    Radical proposals for renaming the “Somatoform Disorders” category “Somatic Symptom Disorders” and combining a number of existing categories under a new rubric, “Complex Somatic Symptom Disorder (CSSD)”, and a more recently proposed “Simple Somatic Symptom Disorder (SSSD)”, have the potential for bringing millions more patients under a mental health banner and expanding markets for psychiatric services, antidepressants, antipsychotics and behavioural therapies such as Cognitive Behavioural Therapy (CBT) for the “modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors” for all patients with somatic [bodily] symptoms, irrespective of cause.

    In a June ’09 Editorial published in the Journal of Psychosomatic Research, titled “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report”, which expanded on the brief DSM-5 Work Group progress report published on the DSM-5 Development website that April, Joel E Dimsdale and fellow DSM-5 Work Group member, Francis Creed, reported that by doing away with the “controversial concept of medically unexplained symptoms”, their proposed classification might diminish the “dichotomy, inherent in the ‘Somatoform’ section of DSM IV, between disorders based on medically unexplained symptoms and patients with organic disease.”

    The conceptual framework the Work Group proposes:

    “…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.”

    If the most recent “Somatic Symptom Disorders” Work Group proposals gain DSM Task Force approval, all medical diseases and disorders, whether “established general medical conditions or disorders like diabetes” or conditions presenting with “somatic symptoms of unclear etiology” will have the potential for a bolt-on diagnosis of “somatic symptom disorder” if the clinician considers that the patient’s response to their bodily symptoms, concerns about their health or their perception of their level of disability is “disproportionate”, or their coping styles “maladaptive.”

    Some patient groups, like CFS and ME patients, may be especially vulnerable to highly subjective and difficult to quantify constructs such as “disproportionate distress and disability”, “catastrophising”, “health-related anxiety”, “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome” with “health concerns [that] may assume a central role in the individual’s life, becoming a feature of his/her identity and dominating interpersonal relationships.”

    In its latest proposals, the Work Group writes:

    “…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.”

    “…The symptoms may or may not be associated with a known medical condition. Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease…”

    “…Patients with this diagnosis tend to have very high levels of health-related anxiety. They appraise their bodily symptoms as unduly threatening, harmful, or troublesome and often fear the worst about their health. Even when there is evidence to the contrary, they still fear the medical seriousness of their symptoms. Health concerns may assume a central role in the individual’s life, becoming a feature of his/her identity and dominating interpersonal relationships.”

    These proposals could potentially result in misdiagnosis of a mental health disorder or the misapplication of an additional diagnosis of a mental health disorder.

    There may be considerable implications for these highly subjective criteria for the diagnoses assigned to patients, for the provision of social care, the payment of employment, medical and disability insurance, the types of treatment and testing insurers are prepared to fund and the length of time for which insurers are prepared to pay out.

    The full criteria and key documents that accompany these Work Group proposals need to be scrutinized.

    The most recent proposals of the DSM-5 “Somatic Symptoms Disorders” Work Group plus two key Disorder Description and Rationale PDF documents can be read on the APA’s DSM-5 Development site here. The stakeholder review and comment period is open until June 15:

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

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