Three BMJ letters published in response to Somatic Symptom Disorder commentary

Three letters are published this week in response to Allen Frances’ BMJ commentary on ‘Somatic Symptom Disorder’

Post #237 Shortlink: http://wp.me/pKrrB-2No

On March 19, BMJ published a commentary by Allen Frances, MD, with contribution from Suzy Chapman, in both the print and online editions, strongly opposing the inclusion of ‘Somatic Symptom Disorder’ in the forthcoming DSM-5:

PERSONAL VIEW
The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill
This new condition suggested in the bible of mental health diagnoses lacks specificity, says Allen Frances

The opinion piece was also featured as US Editor’s Choice:

DSM-5 and the rough ride from approval to publication
Edward Davies, US news and features editor, BMJ

BMJ press released the commentary which was picked up by a number of international media sites including UK Times and Deborah Brauser for Medscape Medical News. To date, 31 Rapid Responses have been received.

Three letters (all US respondents) are printed in this week’s BMJ print edition (20 April 2013 Vol 346, Issue 7904). The letters are behind a paywall so I am giving links to the original BMJ Rapid Responses, with the caveat that responses may have been edited for the print edition:

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LETTERS
New somatic symptom disorder in DSM-5

Helping to find the most accurate diagnosis

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2228 (Published 16 April 2013) BMJ 2013;346:f2228
Joel E Dimsdale, professor of psychiatry emeritus, Michael Sharpe, professor of psychiatry, Francis Creed, professor of psychiatry, DSM-5 Somatic Symptom Disorders work group  BMJ Rapid Response 20 March 2013

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Guilty of diagnostic expansion

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2254 (Published 16 April 2013) BMJ 2013;346:f2254
James Phillips, psychiatrist, USA  BMJ Rapid Response 25 March 2013

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A step in the wrong direction

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2233 (Published 16 April 2013) BMJ 2013;346:f2233
Steven A King, chair, DSM-IV and DSM-IV-TR pain disorders committees; Pain Management and Psychiatry, New York  BMJ Rapid Response 28 March 2013

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Further reading:

Somatic Symptom Disorder could capture millions more under mental health diagnosis Suzy Chapman, May 26, 2012
Mislabeling Medical Illness As Mental Disorder Allen Frances, MD, Psychology Today, DSM 5 in Distress, December 8, 2012
Why Did DSM 5 Botch Somatic Symptom Disorder? Allen Frances, MD, Psychology Today, Saving Normal, February 6, 2013
New Psych Disorder Could Mislabel Sick as Mentally Ill Susan Donaldson James, ABC News, February 27, 2013
Dimsdale JE. Medically unexplained symptoms: a treacherous foundation for somatoform disorders? Psychiatr Clin North Am 2011;34:511-3. [PMID: 21889675]

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American Psychiatric Association justifications for SSD:

APA Somatic Symptom Disorder Fact Sheet 
Somatic Chapter Drops Centrality Of Unexplained Medical Symptoms Psychiatric News, Mark Moran, March 1, 2013
Somatic Symptoms Criteria in DSM-5 Improve Diagnosis, Care David J Kupfer, MD, Chair, DSM-5 Task Force, defends the SSD construct, Huffington Post, February 8, 2013

DSM-5 Task Force Ponders Round 2 of Public Feedback: Deborah Brauser for Medscape Medical News

DSM-5 Task Force Ponders Round 2 of Public Feedback: Deborah Brauser for Medscape Medical News

Post #110 Shortlink: http://wp.me/pKrrB-1lA

The American Psychiatric Association’s DSM-5 Task Force published no breakdowns for the number of submissions received by each of its 13 Work Groups during the first and second public stakeholder reviews of draft proposals for revision of DSM-IV categories and criteria.

Nor has the Task Force made public lists of names of those professional bodies, organizations and institutions that have submitted feedback.

These stakeholder reviews of draft proposals are not organized as formal consultation processes and few organizations appear to receive any response from the Task Force.

But the British Psychological Society (BPS) did receive a reply to their critical submission, published in June, and the response from Dr Darrel Regier, Vice-Chair of the DSM-5 Task Force, can be read here.

At the end of August, Deborah Brauser, writing for Medscape Medical News, reported on the closure of the second public stakeholder review with quotes from DSM-5 Task Force Chair, David Kupfer, MD, around which DSM categories had received the greatest number of responses during the second review.

Ms Brauser reports:

“According to Dr. Kupfer, the specific diagnostic categories that received the most feedback were sexual and gender identity disorders, followed closely by somatic symptom and anxiety disorders.”

“In addition, the Neurodevelopmental Work Group continued to receive commentary on the issue of autism. But I think it was much, much less than it had received previously. After that, there was a reasonable drop-off in the other groups,” he said.

“Substance abuse and mood disorders received the next highest number of comments, followed by personality disorders.”

On May 4, the Task Force posted revised draft proposals for categories and criteria on its DSM-5 Development website with no prior announcement on the site, itself, and with no news release being issued by the APA. The comment period, which had been scheduled to run only until June 15, was extended by an additional four weeks on the day after it had been due to close.

There were 2120 individual comments in the second public review. 8600 comments were reported to have been received during the first public review, in the Spring of 2010.

A third and final public feedback period is scheduled for early 2012. The full Medscape report can be read here.

 

Medscape Medical News > Psychiatry

DSM-5 Task Force Ponders Round 2 of Public Feedback

New Diagnostic Manual Still on Track for Publication in 2013

by Deborah Brauser | August 31, 2011

Deborah Brauser is a freelance writer for Medscape

August 31, 2011 — The second public feedback period for the upcoming Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), ended July 15 and has garnered more than 2000 registered comments.

In an interview with Medscape Medical News, David Kupfer, MD, chair of the American Psychiatric Association’s (APA’s) DSM-5 Task Force, said the distribution of comments was “somewhat similar to the first go-round.”

Read full article

Related information

1] DSM-5 Development: http://www.dsm5.org/Pages/Default.aspx

2] DSM-5 Timeline: http://www.dsm5.org/about/Pages/Timeline.aspx

3] “Somatic Symptom Disorders” proposals: http://www.dsm5.org/proposedrevision/Pages/SomaticSymptomDisorders.aspx

4] Published response by the British Psychological Society to the DSM-5 2nd Review of Draft Proposals, June 2011: http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5%202011%20-%20BPS%20response.pdf

5] Response to above from Darrel Regier, MD, Vice-Chair, DSM-5 Task Force, July 2011: http://www.thepsychologist.org.uk/blog/11/blogpost.cfm?threadid=2102&catid=48

Open Letter and Petition to DSM-5 Task Force by Society for Humanistic Psychology (Division 32 of the American Psychological Association)

Open Letter and Petition to DSM-5 Task Force by Society for Humanistic Psychology (Division 32 of the American Psychological Association)

Post #107 Shortlink: http://wp.me/pKrrB-1jI

Update @ January 11, 2012: The third and final draft of proposals for changes to DSM-IV categories and criteria is delayed because field trials and evaluations are running behind schedule and extended to March. The final draft is now expected to be released for public review and comment, “no later than May 2012″, according to DSM-5 Task Force Vice-chair, Darrel Regier, MD [1].

Third review of DSM-5 draft proposals on the horizon

This time last year, folk were mailing me saying – I don’t know why you bother continuing to monitor DSM-5 and ICD-11, XMRV is going to render the DSM-5 proposals meaningless.

Well that was then, and this is now. And in a couple of months’ time we’ll be anticipating the third and final public review and feedback on the APA’s draft proposals for changes to categories and criteria for the revision of DSM-IV.

During the first stakeholder feedback exercise, over 8,600 comments rolled in; during the second comment period (which was extended by an additional four weeks), the Task Force and work groups received over 2000 submissions.

According to the current DSM-5 Timeline:

September-November 2011: Work groups will be provided with results from both field trials and will update their draft criteria as needed. Field trial results and revised proposals will be reviewed at the November Task Force meeting.

January-February 2012: Revised draft diagnostic criteria will be posted on http://www.dsm5.org and open to a third public feedback period for two months. Feedback will be shared directly with work group members, and further edits to proposals will be made as needed.” [1]

According to the DSM-5 Development home page:

“…Following analysis of field trial results, we will revise the proposed criteria as needed and, after appropriate review and approval, we will post these changes on this Web site. At that time, we will again open the site to a third round of comments from visitors, which will be systematically reviewed by each of the work groups for consideration of additional changes. Thus, the current commenting period is not the final opportunity for you to submit feedback, and subsequent revisions to DSM-5 proposals will be jointly informed by field trial findings as well as public commentary…” [2]

Assuming the APA’s schedule remains on target, US and international patient organizations and advocates need to start preparing well in advance of the New Year for how best to engage our own medical and allied professionals in this process and encourage their input.

As soon as DSM-5 Draft 3 is posted on the DSM-5 Development site, I shall put out alerts on my websites, via Co-Cure and on other platforms and I shall be contacting UK patient organizations, as I have done for the previous two public review exercises.

But I hope that other advocates and groups, in the US and internationally, will work to take this forward and ensure that as many international patient organizations, ME and CFS clinicians and researchers, like those who collaborated on the new ME International Consensus Criteria, allied health professionals, medical lawyers, social workers and other end uses of the DSM are made aware of the proposals of the “Somatic Symptom Disorders” Work Group and the implications for ME, CFS, FM, IBS, CI, CS and GWS patient groups, and encouraged to submit comments as professional stakeholders.

 

Open Letter and Petition to DSM-5 Task Force

Today I was alerted to an Open Letter and Petition sponsored by the Society for Humanistic Psychology, Division 32 of the American Psychological Association, in alliance with the Society for Community Research and Action: Division of Community Psychology (Division 27 of APA) and the Society for Group Psychology and Psychotherapy (Division 49 of APA) [3]. (No press release, but I’ll update if one is issued.)

These American Psychological Association Divisions are inviting mental health professionals and mental health organizations to sign up in support of an open letter to the American Psychiatric Association’s DSM-5 Task Force.

Their response to DSM-5 structure and proposals may be of interest to psychiatrists and psychologists affiliated to, or on the boards of our own ME and CFS patient organizations.

The Open Letter to the DSM-5 Task Force can be read here and a copy is appended:

http://www.ipetitions.com/petition/dsm5/

Under the subheading “New Emphasis on Medico-Physiological Theory”, the Open Letter sponsors comment on some aspects of the DSM-5 proposals for the “Somatic Symptom Disorders” categories. The Open Letter also supports concerns set out within the formal response to DSM-5 draft proposals submitted by the British Psychological Society, earlier this year, and more recent concerns published by the American Counseling Association.

A couple of points: both the American Psychological Association, three of whose Divisions are sponsors of this Open Letter, and the American Psychiatric Association use the acronym “APA”. It is the American Psychiatric Association’s DSM-5 Task Force that is developing the DSM-5.

Secondly, although the first release of the DSM-5 draft proposals did have the diagnosis “Factitious Disorder” placed under “Somatic Symptom Disorders (SSDs)”, the most recent (May 2011) DSM-5 draft proposes placing “Factitious Disorder” under the diagnostic chapter “Other Disorders”, not within the SSDs, as the Open Letter, below, states [4], [5].

Suzy Chapman

[1] DSM-5 Development Timeline: http://www.dsm5.org/about/Pages/Timeline.aspx

[2] DSM Development website: http://www.dsm5.org/Pages/Default.aspx

[3] Society for Humanistic Psychology: http://www.apadivisions.org/division-32/index.aspx

[4] DSM-5 Draft Proposals, Somatic Symptom Disorders: http://www.dsm5.org/proposedrevision/Pages/SomaticSymptomDisorders.aspx

[5] DSM-5 Draft Proposals, Other Disorders: http://www.dsm5.org/proposedrevision/Pages/OtherDisorders.aspx


The Open Letter and Petition can be read here: http://www.ipetitions.com/petition/dsm5/

There’s also a copy on the blog of  Society for Humanistic Psychology

Sponsor

Society for Humanistic Psychology, Division 32 of the American Psychological Association, in alliance with Society for Community Research and Action: Division of Community Psychology (Division 27 of APA) and Society for Group Psychology and Psychotherapy (Division 49 of APA). We invite mental health professionals and mental health organizations to sign on in support of this petition to the DSM5 Task Force of the American Psychiatric Association

To the DSM-5 Task Force and the American Psychiatric Association:

As you are aware, the DSM is a central component of the research, education, and practice of most licensed psychologists in the United States. Psychologists are not only consumers and utilizers of the manual, but we are also producers of seminal research on DSM-defined disorder categories and their empirical correlates. Practicing psychologists in both private and public service utilize the DSM to conceptualize, communicate, and support their clinical work.

For these reasons, we believe that the development and revision of DSM diagnoses should include the contribution of psychologists, not only as select individuals on a committee, but as a professional community. We have therefore decided to offer the below response to DSM-5 development. This document was composed in recognition of, and with sensitivity to, the longstanding and congenial relationship between American psychologists and our psychiatrist colleagues.

Overview

Though we admire various efforts of the DSM-5 Task Force, especially efforts to update the manual according to new empirical research, we have substantial reservations about a number of the proposed changes that are presented on www.dsm5.org. As we will detail below, we are concerned about the lowering of diagnostic thresholds for multiple disorder categories, about the introduction of disorders that may lead to inappropriate medical treatment of vulnerable populations, and about specific proposals that appear to lack empirical grounding. In addition, we question proposed changes to the definition(s) of mental disorder that deemphasize sociocultural variation while placing more emphasis on biological theory. In light of the growing empirical evidence that neurobiology does not fully account for the emergence of mental distress, as well as new longitudinal studies revealing long-term hazards of standard neurobiological (psychotropic) treatment, we believe that these changes pose substantial risks to patients/clients, practitioners, and the mental health professions in general.

Given the changes currently taking place in the profession and science of psychiatry, as well as the developing empirical landscape from which psychiatric knowledge is drawn, we believe that it is important to make our opinions known at this particular historical moment. As stated at the conclusion of this letter, we believe that it is time for psychiatry and psychology collaboratively to explore the possibility of developing an alternative approach to the conceptualization of emotional distress. We believe that the risks posed by DSM-5, as outlined below, only highlight the need for a descriptive and empirical approach that is unencumbered by previous deductive and theoretical models.

In more detail, our response to DSM-5 is as follows:

Advances Made by the DSM-5 Task Force

We applaud certain efforts of the DSM-5 Task Force, most notably efforts to resolve the widening gap between the current manual and the growing body of scientific knowledge on psychological distress. In particular, we appreciate the efforts of the Task Force to address limitations to the validity of the current categorical system, including the high rates of comorbidity and Not Otherwise Specified (NOS) diagnoses, as well as the taxonomic failure to establish ‘zones of rarity’ between purported disorder entities (Kendell & Jablensky, 2003). We agree with the APA/DSM-5 Task Force statement that, from a systemic perspective,

The DSM-III categorical diagnoses with operational criteria were a major advance for our field, but they are now holding us back because the system has not kept up with current thinking. Clinicians complain that the current DSM-IV system poorly reflects the clinical realities of their patients. Researchers are skeptical that the existing DSM categories represent a valid basis for scientific investigations, and accumulating evidence supports this skepticism. (Schatzberg, Scully, Kupfer, & Regier, 2009)

As researchers and clinicians, we appreciate the attempt to address these problems. However, we have serious reservations about the proposed means for doing so. Again, we are concerned about the potential consequences of the new manual for patients and consumers; for psychiatrists, psychologists, and other practitioners; and for forensics, health insurance practice, and public policy. Our specific reservations are as follows:

Lowering of Diagnostic Thresholds

The proposal to lower diagnostic thresholds is scientifically premature and holds numerous risks. Diagnostic sensitivity is particularly important given the established limitations and side-effects of popular antipsychotic medications. Increasing the number of people who qualify for a diagnosis may lead to excessive medicalization and stigmatization of transitive, even normative distress. As suggested by the Chair of DSM-IV Task Force Allen Frances (2010), among others, the lowering of diagnostic thresholds poses the epidemiological risk of triggering false-positive epidemics.

We are particularly concerned about:

“Attenuated Psychosis Syndrome,” which describes experiences common in the general population, and which was developed from a “risk” concept with strikingly low predictive validity for conversion to full psychosis.

• The proposed removal of Major Depressive Disorder’s bereavement exclusion, which currently prevents the pathologization of grief, a normal life process.

• The reduction in the number of criteria necessary for the diagnosis of Attention Deficit Disorder, a diagnosis that is already subject to epidemiological inflation.

• The reduction in symptomatic duration and the number of necessary criteria for the diagnosis of Generalized Anxiety Disorder.

Though we also have faith in the perspicacity of clinicians, we believe that expertise in clinical decision-making is not ubiquitous amongst practitioners and, more importantly, cannot prevent epidemiological trends that arise from societal and institutional processes. We believe that the protection of society, including the prevention of false epidemics, should be prioritized above nomenclatural exploration.

Vulnerable Populations

We are also gravely concerned about the introduction of disorder categories that risk misuse in particularly vulnerable populations. For example, Mild Neurocognitive Disorder might be diagnosed in elderly with expected cognitive decline, especially in memory functions. Additionally, children and adolescents will be particularly susceptible to receiving a diagnosis of Disruptive Mood Dysregulation Disorder or Attenuated Psychosis Syndrome. Neither of these newly proposed disorders have a solid basis in the clinical research literature, and both may result in treatment with neuroleptics, which, as growing evidence suggests, have particularly dangerous side-effects (see below)—as well as a history of inappropriate prescriptions to vulnerable populations, such as children and the elderly

Sociocultural Variation

The DSM-5 has proposed to change the Definition of a Mental Disorder such that DSM-IV’s Feature E: “Neither deviant behavior (e.g., political, religious, or sexual) nor conflicts that are primarily between the individual and society are mental disorders unless the deviance or conflict is a symptom of a dysfunction in the individual,” will instead read “[A mental disorder is a behavioral or psychological syndrome or pattern] [t]hat is not primarily a result of social deviance or conflicts with society.” The latter version fails to explicitly state that deviant behavior and primary conflicts between the individual and society are not mental disorders. Instead, the new proposal focuses on whether mental disorder is a “result” of deviance/social conflicts. Taken literally, DSM-5’s version suggests that mental disorder may be the result of these factors so long as they are not “primarily” the cause. In other words, this change will require the clinician to draw on subjective etiological theory to make a judgment about the cause of presenting problems. It will further require the clinician to make a hierarchical decision about the primacy of these causal factors, which will then (partially) determine whether mental disorder is said to be present. Given lack of consensus as to the “primary” causes of mental distress, this proposed change may result in the labeling of sociopolitical deviance as mental disorder.

Revisions to Existing Disorder Groupings

Several new proposals with little empirical basis also warrant hesitation:

• As mentioned above, Attenuated Psychosis Syndrome and Disruptive Mood Dysregulation Disorder (DMDD) have questionable diagnostic validity, and the research on these purported disorders is relatively recent and sparse.

• The proposed overhaul of the Personality Disorders is perplexing. It appears to be a complex and idiosyncratic combined categorical-dimensional system that is only loosely based on extant scientific research. It is particularly concerning that a member of the Personality Disorders Workgroup has publicly described the proposals as “a disappointing and confusing mixture of innovation and preservation of the status quo that is inconsistent, lacks coherence, is impractical, and, in places, is incompatible with empirical facts” (Livesley, 2010), and that, similarly, Chair of DSM-III Task Force Robert Spitzer has stated that, of all of the problematic proposals, “Probably the most problematic is the revision of personality disorders, where they’ve made major changes; and the changes are not all supported by any empirical basis.”

• The Conditions Proposed by Outside Sources that are under consideration for DSM-5 contain several unsubstantiated and questionable disorder categories. For example, “Apathy Syndrome,” “Internet Addiction Disorder,” and “Parental Alienation Syndrome” have virtually no basis in the empirical literature.

New Emphasis on Medico-Physiological Theory

Advances in neuroscience, genetics, and psychophysiology have greatly enhanced our understanding of psychological distress. The neurobiological revolution has been incredibly useful in conceptualizing the conditions with which we work. Yet, even after “the decade of the brain,” not one biological marker (“biomarker”) can reliably substantiate a DSM diagnostic category. In addition, empirical studies of etiology are often inconclusive, at best pointing to a diathesis-stress model with multiple (and multifactorial) determinants and correlates. Despite this fact, proposed changes to certain DSM-5 disorder categories and to the general definition of mental disorder subtly accentuate biological theory. In the absence of compelling evidence, we are concerned that these reconceptualizations of mental disorder as primarily medical phenomena may have scientific, socioeconomic, and forensic consequences. New emphasis on biological theory can be found in the following DSM-5 proposals:

• The first of DSM-5’s proposed revisions to the Definition of a Mental Disorder transforms DSM-IV’s versatile Criterion D: “A manifestation of a behavioral, psychological, or biological dysfunction in the individual” into a newly collapsed Criterion B: [A behavioral or psychological syndrome] “That reflects an underlying psychobiological dysfunction.” The new definition states that all mental disorders represent underlying biological dysfunction. We believe that there is insufficient empirical evidence for this claim.

• The change in Criterion H under “Other Considerations” for the Definition of a Mental Disorder adds a comparison between medical disorders and mental disorders with no discussion of the differences between the two. Specifically, the qualifying phrase “No definition adequately specifies precise boundaries for the concept of ‘mental disorder” was changed to “No definition perfectly specifies precise boundaries for the concept of either ’medical disorder’ or ‘mental/psychiatric disorder’.” This effectively transforms a statement meant to clarify the conceptual limitations of mental disorder into a statement equating medical and mental phenomena.

• We are puzzled by the proposals to “De-emphasize medically unexplained symptoms” in Somatic Symptom Disorders (SSDs) and to reclassify Factitious Disorder as an SSD. The SSD Workgroup explains: “…because of the implicit mind-body dualism and the unreliability of assessments of ‘medically unexplained symptoms,’ these symptoms are no longer emphasized as core features of many of these disorders.” We do not agree that hypothesizing a medical explanation for these symptoms will resolve the philosophical problem of Cartesian dualism inherent in the concept of “mental illness.” Further, merging the medico-physical with the psychological eradicates the conceptual and historical basis for somatoform phenomena, which are by definition somatic symptoms that are not traceable to known medical conditions. Though such a redefinition may appear to lend these symptoms a solid medico-physiological foundation, we believe that the lack of empirical evidence for this foundation may lead to practitioner confusion, as might the stated comparison between these disorders and research on cancer, cardiovascular, and respiratory diseases.

• The proposed reclassification of Attention Deficit/Hyperactivity Disorder (ADHD) from Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence to the new grouping “Neurodevelopmental Disorders” seems to suggests that that ADHD has a definitive neurological basis. This change, in combination with the proposal to lower the diagnostic threshold for this category as described above, poses high risk of exacerbating the extant over-medicalization and over-diagnosis of this disorder category.

• A recent publication by the Task Force, The Conceptual Evolution of DSM-5 (Regier, Narrow, Kuhl, & Kupfer, 2011), states that the primary goal of DSM-5 is “to produce diagnostic criteria and disorder categories that keep pace with advances in neuroscience.” We believe that the primary goal of DSM-5 should be to keep pace with advances in all types of empirical knowledge (e.g., psychological, social, cultural, etc.).

Taken together, these proposed changes seem to depart from DSM’s 30-year “atheoretical” stance in favor of a pathophysiological model. This move appears to overlook growing disenchantment with strict neurobiological theories of mental disorder (e.g., “chemical imbalance” theories such as the dopamine theory of schizophrenia and the serotonin theory of depression), as well as the general failure of the neo-Kraepelinian model for validating psychiatric illness. Or in the words of the Task Force:

“…epidemiological, neurobiological, cross-cultural, and basic behavioral research conducted since DSM-IV has suggested that demonstrating construct validity for many of these strict diagnostic categories (as envisioned most notably by Robins and Guze) will remain an elusive goal” (Kendler, Kupfer, Narrow, Phillips, & Fawcett, 2009, p. 1).

We thus believe that a move towards biological theory directly contradicts evidence that psychopathology, unlike medical pathology, cannot be reduced to pathognomonic physiological signs or even multiple biomarkers. Further, growing evidence suggests that though psychotropic medications do not necessarily correct putative chemical imbalances, they do pose substantial iatrogenic hazards. For example, the increasingly popular neuroleptic (antipsychotic) medications, though helpful for many people in the short term, pose the long-term risks of obesity, diabetes, movement disorders, cognitive decline, worsening of psychotic symptoms, reduction in brain volume, and shortened lifespan (Ho, Andreasen, Ziebell, Pierson, & Magnotta, 2011; Whitaker, 2002, 2010). Indeed, though neurobiology may not fully explain the etiology of DSM-defined disorders, mounting longitudinal evidence suggests that the brain is dramatically altered over the course of psychiatric treatment.

Conclusions

In sum, we have serious reservations about the proposed content of the future DSM-5, as we believe that the new proposals pose the risk of exacerbating longstanding problems with the current system. Many of our reservations, including some of the problems described above, have already been articulated in the formal response to DSM-5 issued by the British Psychological Society (BPS, 2011) and in the email communication of the American Counseling Association (ACA) to Allen Frances (Frances, 2011b).

In light of the above-listed reservations concerning DSM-5’s proposed changes, we hereby voice agreement with BPS that:

• “…clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.”

• “The putative diagnoses presented in DSM-V are clearly based largely on social norms, with ‘symptoms’ that all rely on subjective judgments, with little confirmatory physical ‘signs’ or evidence of biological causation. The criteria are not value-free, but rather reflect current normative social expectations.”

• “… [taxonomic] systems such as this are based on identifying problems as located within individuals. This misses the relational context of problems and the undeniable social causation of many such problems.”

• There is a need for “a revision of the way mental distress is thought about, starting with recognition of the overwhelming evidence that it is on a spectrum with ‘normal’ experience” and the fact that strongly evidenced causal factors include “psychosocial factors such as poverty, unemployment and trauma.”

• An ideal empirical system for classification would not be based on past theory but rather would “ begin from the bottom up – starting with specific experiences, problems or ‘symptoms’ or ‘complaints’.”

The present DSM-5 development period may provide a unique opportunity to address these dilemmas, especially given the Task Force’s willingness to reconceptualize the general architecture of psychiatric taxonomy. However, we believe that the proposals presented on www.dsm5.org are more likely to exacerbate rather than mitigate these longstanding problems. We share BPS’s hopes for a more inductive, descriptive approach in the future, and we join BPS in offering participation and guidance in the revision process.

References

American Psychiatric Association (2011). DSM-5 Development. Retrieved from http://www.dsm5.org/Pages/Default.aspx

British Psychological Society. (2011) Response to the American Psychiatric Association: DSM-5 development.
Retrieved from http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5%202011%20-%20BPS%20response.pdf

Compton, M. T. (2008). Advances in the early detection and prevention of schizophrenia.
Medscape Psychiatry & Mental Health. Retrieved from http://www.medscape.org/viewarticle/575910

Frances, A. (2010). The first draft of DSM-V. BMJ. Retrieved from http://www.bmj.com/content/340/bmj.c1168.full

Frances, A. (2011a). DSM-5 approves new fad diagnosis for child psychiatry: Antipsychotic use
likely to rise. Psychiatric Times. Retrieved from http://www.psychiatrictimes.com/display/article/10168/1912195

Frances, A. (2011b). Who needs DSM-5? A strong warning comes from professional counselors
[Web log message]. Psychology Today. Retrieved from http://www.psychologytoday.com/blog/dsm5-in-distress/201106/who-needs-dsm-5

Hanssen, M., Bak, M., Bijl, R., Vollebergh, W., & van Os, J. (2005). The incidence and outcome of subclinical psychotic experiences in the general population. British Journal of Clinical Psychology, 44, 181-191.

Ho, B-C., Andreasen, N. C., Ziebell, S., Pierson, R., & Magnotta, V. (2011). Long-term antipsychotic treatment and brain volumes. Archives of General Psychiatry, 68, 128-137.

Johns, L. C., & van Os, J. (2001). The continuity of psychotic experiences in the general population. Clinical Psychology Review, 21, 1125-1141.

Kendell, R., & Jablensky, A. (2003). Distinguishing between the validity and utility of psychiatric diagnoses. The American Journal of Psychiatry, 160, 4-11.

Kendler, K., Kupfer, D., Narrow, W., Phillips, K., & Fawcett, J. (2009, October 21). Guidelines
for making changes to DSM-V. Retrieved August 30, 2011, from
http://www.dsm5.org/ProgressReports/Documents/Guidelines-for-Making-Changes-to-DSM_1.pdf

Livesley, W. J. (2010). Confusion and incoherence in the classification of Personality Disorder: Commentary on the preliminary proposals for DSM-5. Psychological Injury and Law, 3, 304-313.

Moran, M. (2009). DSM-V developers weigh adding psychosis risk. Psychiatric News Online.
Retrieved from http://pn.psychiatryonline.org/content/44/16/5.1.full

Regier, D. A., Narrow, W. E., Kuhl, E. A., & Kupfer, D. J. (2011). The conceptual evolution of DSM-5. Arlington, VA: American Psychiatric Publishing.

Schatzberg, A. F., Scully, J. H., Kupfer, D. J., & Regier, D. A. (2009). Setting the record straight: A response to Frances commentary on DSM-V. Psychiatric Times, 26. Retrieved from http://www.psychiatrictimes.com/dsm/content/article/10168/1425806

Whitaker, R. (2002). Mad in America. Cambridge, MA: Basic Books. Also see http://www.madinamerica.com/madinamerica.com/Schizophrenia.html

Whitaker, R. (2010). Anatomy of an epidemic. New York, NY: Random House.

Important notice from DSM-5 Development website (further extension to comment period)

Important notice from DSM-5 Development website (further extension to comment period)

Post #98 Shortlink: http://wp.me/pKrrB-1eW

DSM-5 Development

http://www.dsm5.org/Pages/Default.aspx

Friday, July 15th: We are experiencing some site difficulties and our system is unable to accept comments today. As this is the final day of our open comment period, we encourage you to submit your comments to dsm5@psych.org. We will make sure your comments, if posted by midnight, July 18th, are directed to the appropriate DSM work group(s) for their review. We apologize for the inconvenience and appreciate your contributions to this important diagnostic revision.

DSM-5 Web Site Period for Comments has Been Extended to July 15

DSM-5 Web Site Period for Comments has Been Extended to July 15

Post #93 Shortlink: http://wp.me/pKrrB-1cB

The comment period for the second public review and feedback on proposals for draft criteria for DSM-5 was scheduled to close at midnight, yesterday, June 15.

I noted this morning that it was still possible to upload comments.

This afternoon, the APA has posted a notice on the DSM-5 Development site announcing a four week extension for submission of comments, until Friday, July 15.

APA announcement, today, June 16:

http://www.dsm5.org/Pages/Default.aspx

DSM-5 Web Site Period for Comments has Been Extended to July 15!

We are extending the period for submitting comments and suggestions to the web site regarding the proposed diagnostic criteria revisions, and the newly proposed organizational structure for DSM-5. We are appreciative of the ongoing interest in contributing to this process and are extending the period for submitting comments until July 15th. This extension will also permit reviews and comments for the newly proposed criteria and approach for the assessment of Personality Disorders, which are now being uploaded to the website for release. Our thanks to those who have already provided contributions to this interactive process.

I expect the APA has not received sufficient numbers of responses to comfortably announce in a news release. (Last year they reported having received over 8,000.)

I had asked Dr William Narrow, Task Force member, on June 4, when the DSM-5 website was offline for much of the day, for an extension until at least the end of June.

The extension announced today runs to July 15. Even better!

So those of you who did not submit now have additional 4 weeks in which to submit responses.

I want to see thousands telling the APA why they need to rip up these proposals for the revision of the “Somatoform Disorders” and start again.

Copies of patient organizations, patient and advocates responses, plus the Coalition4ME/CFS’s template letter here: http://wp.me/PKrrB-19a

Thanks to all of you who have already submitted. 

Suzy Chapman

Related material:

Final push: DSM-5 draft criteria

Coalition4ME/CFS issues Call to Action on DSM-5 proposals

Call for Action – Second DSM-5 public comment period

Final push: We have till Wednesday to submit comments on the DSM-5 draft criteria

Final push: We have till Wednesday to submit comments on the DSM-5 draft criteria

Post #90 Shortlink: http://wp.me/pKrrB-1bm

“So basically, they’re dumping some little-used, contentious and unpopular categories in a big bucket and stirring them up. The resulting mud could well end up sticking to us!”

If you only do two things online this week make it these:

1] Register to submit feedback via the DSM-5 Development website, here, and submit a letter of concern – however brief: http://tinyurl.com/Somatic-Symptom-Disorders

2] If you know an informed and sympathetic clinician, psychologist, allied health professional, lawyer, educator or social worker, contact them today and urge them to review these criteria and to submit a response as a concerned professional, or ask your state ME/CFS organization to submit a response.

The closing date for comments in the second DSM-5 public review is Wednesday, June 15

How many subscribers are there to the Co-Cure mailing list?

A couple of thousand?

And there are over 4,500 members of Phoenix Rising Forums. These usually very active forums are currently offline. Please use the time and energy you might have spent on Phoenix Rising to submit a comment.

We have the potential for several thousand more responses over the next three days.

OK, the APA issued no prior announcement of its intention to bring forward this second public review of draft criteria and so patient groups could not be alerted in advance. But alerts went out on May 5, the day after the latest criteria were posted on the DSM-5 Development site.

Nevertheless, many international patient organizations have been slow off the mark and some have been lukewarm about the need to submit, this year, or to submit, at all.

I’ve been banging on about the implications for these proposals for ME and CFS patients for two years, now, but where are the responses from our international patient organizations to these latest proposals?

Over two years ago, on May 13, 2009, I first reported on Co-Cure that the conceptual framework the DSM-5 Work Group for “Somatic Symptom Disorders” was proposing would:

“…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.” [1]

(“Somatic” means “bodily” or “of the body”.)

The most recent version of the Disorders description document states:

“This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction…Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors.”

“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.”

“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.” [2]

 

Psychiatric creep

The APA 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, if the clinician decides that the patient’s (or in the case of a child, a parent’s) response to their bodily symptoms and concerns about their health are “excessive”, or their perception of their level of disability “disproportionate”, or their coping styles “maladaptive.”

While the media has focussed on the implications for introducing new additions and broadening definitions of existing DSM diagnostic criteria, there has been no media scrutiny of these Work Group proposals nor recognition that this Work Group has been quietly redefining DSM’s “Somatoform Disorders” categories with proposals that will have the potential for a bolt-on diagnosis of a “somatic symptom disorder” for all medical diseases, whether “established general medical conditions or disorders”, like angina or diabetes, or conditions presenting with “somatic symptoms of unclear etiology.”

Yet these radical proposals for renaming the “Somatoform Disorders” category “Somatic Symptom Disorders” and combining a number of existing, little-used categories under a new umbrella term, “Complex Somatic Symptom Disorder (CSSD)”, and the more recently proposed “Simple Somatic Symptom Disorder (SSSD)”, have the potential for bringing thousands more patients under a mental health banner and expanding markets for psychiatric services, antidepressants and behavioural therapies such as 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 symptoms, irrespective of cause.

 

Sitting ducks

CFS, ME, Fibromyalgia and IBS patients are likely to get caught by these proposals.

CFS and ME patients already diagnosed or waiting for a diagnosis (which might take months or years) would be especially vulnerable to the highly subjective criteria and difficult to measure concepts like “disproportionate distress and disability”, “catastrophising”, “health-related anxiety” and “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome”, this Work Group is proposing.

Other patient groups bundled under the so-called “Functional somatic syndromes” and “medically unexplained” umbrellas, like Chemical Injury (CI), Chemical Sensitivity (CS), chronic Lyme disease and Gulf War Illness, would also be highly vulnerable to a CSSD label.

These proposals could potentially result in misdiagnosis of a mental health disorder, misapplication of an additional diagnosis of a mental health disorder, misapplication of “rehabilitation” therapies like GET or iatrogenic disease.

Families would be at risk of wrongful accusation of “over-involvement” or “excessive” concern for a child’s symptomatology or of encouraging “sick role behaviour” in a child or young person.

Application of these vague and highly subjective criteria may have considerable implications for the diagnoses assigned to patients, for the provision of social care, payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out.

The application of a diagnosis of CSSD may limit the types of treatment, medical investigations and testing that clinicians are prepared to consider and which insurers are prepared to fund.

 

International implications

This is not a US centric issue. The DSM is used to a varying extent in other countries in clinical settings. DSM criteria are currently used more often for research purposes than ICD-10 and the next edition will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients’ medical needs throughout the world.

Please make use of these last three days to tell the APA why the Somatic Symptom Disorders Work Group needs to rip up these proposals and start over again.

Links:

Proposed criteria are set out on the DSM-5 Development site here: http://tinyurl.com/Somatic-Symptom-Disorders

The CSSD criteria are here: http://tinyurl.com/DSM-5-CSSD

For examples of last year’s submissions, go here: http://wp.me/PKrrB-AQ

Copies of this year’s submissions are being collated here: http://wp.me/PKrrB-19a  

If you are a patient organization, professional, patient, carer or advocate and have already submitted and would like a copy of your comment added to my site, please send a copy to me.agenda@virgin.net

Submissions published to date for this second public review:

IACFS/ME (US);
ME Free For All.org (UK);
The Young ME Sufferers Trust (UK);
Coalition4ME/CFS (US);

Angela Kennedy, sociology lecturer (UK);
Dr John L Whiting MD, (Australia);

Kevin Short (UK)
Susanna Agardi (Australia)
Mary Barker (US);
Peter Kemp (UK);
Mary M. Schweitzer Ph.D., (US)

[1] “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report” was published in the June 2009 issue of the Journal of Psychosomatic Research. The journal is co-edited by DSM-5 Work Group members, Prof Francis Creed and Dr James Levenson. Full free text: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

[2] There are two key PDF documents: “Disorders Descriptions” and “Rationale”, which expand on the Work Group’s proposals:

              Disorders Description   Key Document One: “Somatic Symptom Disorders”

              Rationale Document     Key Document Two: “Justification of Criteria — Somatic Symptoms”

Suzy Chapman

IACFS/ ME Statement on DSM-5 Somatic Symptom Disorder

The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) Statement on DSM-5 Somatic Symptom Disorder

Post #89 Shortlink: http://wp.me/pKrrB-1b6

The closing date for comments in the second DSM-5 public review is June 15.

Register to submit feedback via the DSM-5 Development website here:
http://tinyurl.com/Somatic-Symptom-Disorders

More information on registration and preparing submissions here:
http://tinyurl.com/DSM-5-register-to-comment

Copies of last year’s submissions here: http://tinyurl.com/DSM5submissions

Copies of this year’s submissions here: http://tinyurl.com/DSM5submissions2011

IACFS/ME

Dear Members and Colleagues:

I have submitted the comments below to the DSM-5 Work Group on Somatic Symptom Disorders. We are very concerned about the proposed new diagnosis, Complex Somatic Symptom Disorder, and its potential influence on physicians who see patients with CFS/ME.

Thank you.

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

To the DSM-5 Somatic Symptoms Disorders Work Group:

On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACFS/ME), I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

The Work Group’s well-reasoned points about DSM-IV somatoform disorders – that they are little used, confusing, and pejorative – do call for a re-evaluation. The question is: What should replace them? The new inclusive CSSD category attempts to offer a simplified and more inclusive diagnosis that may be more user-friendly to physicians and other health practitioners.

Our major concern is that the logic behind the new CSSD category is not informed by empirical data that directly examines the utility of this diagnosis in medical practice.

As stated by your Work Group: “A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. …Predictive validity of most of the diagnostic proposals has not yet been investigated.”

Given the absence of scientific validation of the CSSD diagnosis, the potential for unintended consequences is a serious concern. One such consequence is the possibility of over-diagnosis that may selectively affect patients with illnesses that are already not well understood such as CFS/ME. If the treating practitioner is skeptical about the severity or even  existence of CFS/ME, then the new criteria can be used to diagnose CSSD without reference to an underlying illness.

For instance, the CSSD criteria of (2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and (3) Excessive time and energy devoted to these symptoms or health concerns, would allow practitioners skeptical of CFS/ME to diagnosis the illness as an Axis I psychiatric disorder. This new psychological diagnosis may then narrow the physician’s focus and reduce the possibility of more effective management of the CFS/ME illness. Furthermore, the CSSD diagnosis may result in additional stigma for already marginalized patients with CFS/ME.

Over-diagnosis with CSSD may also arise from the broad generality of the new criteria and the absence of clear thresholds for patients to meet the criteria. As with somatization/somatoform disorders, when different criteria are used population prevalence varies from less than 1% for somatization disorder to an astonishing 79% for undifferentiated somatoform disorder (cited from Work Group online document). Arguably, the generality of the criteria for both undifferentiated somatoform disorder and CSSD suggests that CSSD may become a much more common (and potentially misapplied) diagnosis than the somatic symptom disorders that it replaces.

Finally, the CSSD diagnosis will not inform the clinician of CFS/ME-specific issues such as adverse reactions to treatment that are more likely in this hypersensitive population. By contrast, the CFS/ME diagnosis is useful for an array of illness related concerns that will assist the clinician in providing care for these medically under-served patients.

Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5. Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value. In its current form, we believe that the new diagnosis will do more harm than good.

Thank you.

Fred Friedberg

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

IACFS/ME
27 N. Wacker Drive, #416
Chicage, Illinois 60606
US

Coalition4ME/CFS issues Call to Action on DSM-5 proposals

Coalition4ME/CFS issues Call to Action on DSM-5 proposals

Post #88 Shortlink: http://wp.me/pKrrB-1aJ

On June 2, the Coalition4ME/CFS, which comprises eight US 305c registered patient organizations, issued a Call to Action for submissions to the DSM-5 Somatic Symptom Disorders Work Group.

Full Coalition4ME/CFS announcement: http://www.coalition4mecfs.org/News.html

Position paper (PDF): http://www.coalition4mecfs.org/DSM-5_Position_Paper_-_FInal2.pdf

Letter to the DSM-5 Task Force – Letter available for use to the public for submit to the task force: http://www.coalition4mecfs.org/DSM5letter.html

The Coalition4ME/CFS – a coalition of US ME/CFS non-profit organizations – has issued a Call to Action on the impending DSM-5 proposal and provided information to assist organizations and patients in writing their own letter to the American Psychiatric Association. The submission period ends June 15th.

THE COALITION ANNOUNCEMENT

DSM-5 Background:

Why this call to action is important to you:

Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). The criteria for a CSSD diagnosis include somatic symptoms that last more than 6 months and significantly disrupt life combined with the doctor’s assessment that the patient has a disproportionate concern about the medical seriousness of his symptoms. The guidelines also include recommendations of Cognitive Behavior Therapy (CBT) and antidepressants as the appropriate therapies.

CSSD could prove disastrous for the ME/CFS patient and for patients with other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. For doctors who view the ME/CFS patient as ‘just depressed’, it will be a small leap to decide that the patient has “disproportionate and persistent concerns about the medical seriousness of one’s symptoms” and, as a result, inappropriately diagnose CSSD. Once diagnosed with CSSD, the implications for diagnosis, treatment, disability and insurance will be profound.

The background and associated issues with the DSM-5 and CSSD can be found in the attached “Complex Somatic Symptom Disorders Position Paper” developed by the Coalition 4 ME/CFS.

What you can do:

The Coalition 4 ME/CFS has sent a response to the APA on this issue, which you can find here. (Feel free to use this letter as a template for your response). The DSM-5 team also needs to hear from as many of you as possible about your concerns. Feel free to draw from the Coalition 4 ME/CFS letter for your own comments. Remember, this must be done by June 15, 2011.

Here are the steps to follow to provide your input:

1. Register on the DSM-5 web site to make comments. The “Register Now” site is in the upper right hand corner of the DSM-5 home page. You will receive a confirmation email with a temporary password that you will have to click on to complete registration. If you have registered previously, you should still have an account and can log in in the same box.

2. Provide your comments directly on the CSSD page. It is probably easiest to create your comments outside of the interface and then copy them in. Bolding and other formatting appear to be lost when you copy your document in.

Thank you,

Coalition 4 ME/CFS

• Other Resources – Suzy Chapmans is an extensive resource for these issues; see Dx Revision Watch

Check out other organizations letters in the comments below and on this page

The Coalition4ME/CFS consists of the

• CFS/Fibromyalgia Organization of Georgia, Inc.
• CFS Knowledge Center
• CFS Solutions of West Michigan
• PANDORA Inc. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
• Phoenix Rising
• Rocky Mountain CFS/ME & FM Association (RMCFA)
• Vermont CFIDS Association Inc.
• Wisconsin ME/CFS Association, Inc.

US ME/CFS Non-profit organizations are invited to join the Coalition.

Get on the Coalitions email list here: http://www.coalition4mecfs.org/contact.html

Index: Recent posts around DSM-5 second public review

Index: Recent posts around DSM-5 second public review

Post #84 Shortlink:  http://wp.me/pKrrB-18z

As a number of posts have been published recently on the DSM-5 public review, I am providing an Index:
 

5 May 2011  Post #73: http://wp.me/pKrrB-12k

American Psychiatric Association (APA) announces second public review of DSM-5 draft criteria and structure

Post announcing launch of second DSM-5 public review period with links to DSM-5 Development site and to media coverage.

6 May 2011  Post #74: http://wp.me/pKrrB-12x

APA News Release 4 May 2011: New Framework Proposed for Manual of Mental Disorders

Copy of APA News Release No. 11-27 announcing the posting on 4 May of revised draft criteria for DSM-5 on the DSM-5 Development website and a second public review period running from May to June 15.

8 May 2011  Post #75: http://wp.me/pKrrB-12P

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 1)

Part 1 of this report is a Q & A addressing some of the queries that have been raised with me around the DSM-5 public review process. Includes table comparing “Current DSM-IV Codes and Categories for Somatoform Disorders and ICD-10 Equivalents”. Also includes a screenshot from Chapter 5 (V) Somatoform Disorders (the F codes) F45 – F48.0 (as displaying in the iCAT Alpha Drafting platform in November 2010; this drafting platform has since been replaced by another public Alpha drafting browser launched on 17 May 2011 - see Post #81: ICD-11 Alpha Drafting platform launched 17 May (public version): http://wp.me/pKrrB-16N).

10 May 2011  Post #77: http://wp.me/pKrrB-13z

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 2)

In Part 2 of this report, I set out the latest proposals for draft criteria (dated 14 April 2011) from the DSM-5 Somatic Symptom Disorders Work Group, as published on the DSM-5 Development website, on 4 May.

12 May 2011  Post #78: http://wp.me/pKrrB-15q

Registering to submit comment in the second DSM-5 public review of draft criteria

Information on registering for and submitting comment in the second DSM-5 public review.

18 May 2011  Post #80: http://wp.me/pKrrB-15X

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 3)

In Part 3 of this report, I posted extracts from “Disorders Description”, the first of the two key PDF documents that accompany the revised proposals, highlighting passages in yellow to indicate why ME and CFS patient representation organizations, professionals and advocates need to register their concerns via this second public review.

22 May 2011   Post #82: http://wp.me/pKrrB-16B

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 4)

In Part 4 of this report, I posted the complete text of the key “Rationale” document that accompanies the draft proposals of the Somatic Symptom Disorders Work Group, omitting several pages of references to published and unpublished research papers.

22 May 2011   Post #83: http://wp.me/pKrrB-12d

Call for Action – Second DSM-5 public comment period closes June 15

Sets out why patients, patient organizations, advocates, clinicians, allied health professionals, lawyers and other professional end users need to review the proposals of the Somatic Symptom Disorders Work Group and submit responses. Includes copy of post in Word .doc and PDF formats.

Some of last year’s submissions are collated on this page: http://wp.me/PKrrB-AQ

Call for Action – Second DSM-5 public comment period closes June 15

Call for Action – Second DSM-5 public comment period closes June 15

Post #83 Shortlink Post: http://wp.me/pKrrB-12d

        Disorders Description    Key Document One: “Somatic Symptom Disorders”

       Rationale Document   Key Document Two: “Justification of Criteria — Somatic Symptoms”

 

MS Word .doc format:  Call for Action Second DSM-5 public review

            PDF format:  Call for Action Second DSM-5 public review

For immediate circulation to US and international ME and CFS patient organizations, clinicians, advocates

22 May 2011

Call for Action – Second DSM-5 public comment period closes June 15

The American Psychiatric Association’s DSM-5 Task Force is accepting public comment on its latest proposals for the revision of diagnostic criteria for psychiatric disorders.

The deadline for stakeholder feedback is June 15.

Is this a US specific issue?

No. International input is also required. The Diagnostic and Statistical Manual of Mental Disorders (the DSM) is the primary diagnostic system in the US for defining mental disorders and used to a varying extent in other countries. The next edition of the manual, slated for publication in 2013, will inform health care providers and policy makers for many years to come. DSM-5 will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients’ medical needs throughout the world.

What is being proposed?

The DSM-5 “Somatic Symptom Disorders” Work Group has responsibility for the revision of the DSM-IV “Somatoform Disorders” categories.

The Work Group is recommending renaming the “Somatoform Disorders” section to “Somatic Symptom Disorders” and combining existing categories – “Somatoform Disorders”, “Psychological Factors Affecting Medical Condition (PFAMC)” and possibly “Factitious Disorders” into one group.

(“Somatic” means “bodily” or “of the body”.)

The Work Group also proposes repackaging “Somatization Disorder”, “Hypochondriasis”, “Undifferentiated Somatoform Disorder” and “Pain Disorder” under a new category entitled “Complex Somatic Symptom Disorder” (CSSD). There is also a “Simple Somatic Symptom Disorder” (SSSD) and a proposal to rebrand “Conversion Disorder” as “Functional Neurological Disorder”.

 

Where can I find the full criteria for “CSSD”, “PFAMC” and other proposed categories?

Proposed criteria are set out on the DSM-5 Development site: http://tinyurl.com/Somatic-Symptom-Disorders

The CSSD criteria are here: http://tinyurl.com/DSM-5-CSSD

There are two key PDF documents here, “Disorders Descriptions” and “Rationale”, which expand on the Work Group’s proposals, here, or above:

http://tinyurl.com/SSD-Disorders-Description

http://tinyurl.com/SSD-Justification-of-Criteria

Which patient groups might be hurt by these proposals?

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS). On Day One of the May 10-11 CFSAC meeting, CFSAC Committee discussed the implications of these proposals for CFS and ME patients as part of the agenda item around the proposed coding of CFS for ICD-10-CM. You can watch this section of the meeting (4hrs 27mins in from start of video) here:

http://nih.granicus.com/ViewPublisher.php?view_id=26

If the Work Group’s proposals gain DSM Task Force approval, all medical diseases, whether “established general medical conditions or disorders”, like diabetes or heart disease, or conditions presenting with “somatic symptoms of unclear etiology” will have the potential for a bolt-on diagnosis of a “somatic symptom disorder” – if the practitioner feels the patient meets the new criteria.

As discussed by CFSAC committee members, earlier this month, CFS, ME, Fibromyalgia and IBS patients, already diagnosed or waiting on a diagnosis, may be especially vulnerable to highly subjective criteria and difficult to quantify concepts such as “disproportionate distress and disability”, “catastrophising”, “health-related anxiety” and “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome.”

Other patient groups that are also bundled under the so-called “Functional somatic syndromes” and “medically unexplained” umbrellas, like Chemical Injury (CI), Chemical Sensitivity (CS), chronic Lyme disease and GWS, are highly vulnerable.

In a 2009 Editorial on the progress of the Work Group, the chair wrote that by doing away with the “controversial concept of medically unexplained”, 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.”

So under the guise of eliminating “medically unexplained” symptoms as a diagnostic criterion in order to diminish “stigma”, eradicating “terminology [that] enforces a dualism between psychiatric and medical conditions” and language that is “divisive between patients and clinicians”, the APA 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, if the clinician considers that the patient’s response to their bodily symptoms or their perceived level of disability is “disproportionate” or their coping styles, “maladaptive”.

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 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.

Dual-diagnosis may bring thousands more patients, potentially, under a mental health banner where they may be subject to inappropriate treatments, psychiatric services, antidepressants, antipsychotics and behavioural therapies such as CBT, for the “modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors and promote more effective coping [with their somatic symptoms].”

Coding CFS in the “Signs, symptoms and ill-defined conditions” chapter of the forthcoming ICD-10-CM would also render CFS and ME patients more vulnerable to these DSM-5 Work Group recommendations that will provide another dustbin in which to shovel patients with so-called “medically unexplained” bodily symptoms.

Who should submit comment on these proposals?

All stakeholders are permitted to submit comment and the views of patients, carers, families and advocates are important. But evidence-based submissions from the perspective of informed medical professionals – clinicians, psychiatrists, researchers, allied health professionals, lawyers and other professional end users are likely to have more influence.

National and state patient organizations also need to submit comment.

To date, not one patient organization in the US or UK has confirmed to me that they intend to submit feedback, this year. So we need to lean heavily on our patient organizations to review these criteria.

Where can I read last year’s submissions?

Copies of international patient organization submissions for the first DSM-5 public and stakeholder review are collated on this page of my site, together with selected patient and advocate submissions:

DSM-5 Submissions to the 2010 review: http://tinyurl.com/DSM5submissions

How to comment:

Register to submit feedback via the DSM-5 Development website: http://tinyurl.com/Somatic-Symptom-Disorders

More information on registration and preparing submissions here: http://tinyurl.com/DSM-5-register-to-comment

What else can I do?

Use mailing lists, forums, blogs, websites and contacts to get this information out – especially platforms where clinicians, allied health professionals, medical lawyers and patient organization reps participate. Alert state and national ME, CFS, FM and IBS patient organizations to the deadline and lobby for their involvement.

This is the last alert I shall be sending out. Remember, the deadline is June 15.

Thank you.

—————–

Text and formatted versions of this document in Word .doc and PDF format will be available on my website.

Suzy Chapman

http://dxrevisionwatch.wordpress.com