DSM-5 draft criteria draws nearly 2,300 responses in final public comment period

DSM-5 draft criteria draws nearly 2,300 responses in final public comment period

Post #187 Shortlink: http://wp.me/pKrrB-2j0

According to a Press Release issued yesterday by the American Psychiatric Association (APA), the final public comment period on draft diagnostic criteria for the forthcoming Diagnostic and Statistical Manual of Mental Disorders (DSM-5) drew 2,298 responses.

APA previously reported receiving around 8,600 comments in the first stakeholder comment period and around 2,100 submissions in the second review.

During the second public comment period (May-June 2011), the specific diagnostic categories that received the most comments had been the sexual and gender identity disorders, followed closely by somatic symptom disorders and anxiety disorders.  (As reported by DSM-5 Task Force Vice-chair, Darrel Regier M.D.)

For this final review that closed on June 15, APA reports, “Although each disorder area drew a wide range of comments, the two Work Groups with the highest number were the Neurodevelopmental Work Group (397 comments) and the Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic Stress and Dissociative Disorders Work Group (545 comments). APA also received more than 800 comments focused broadly on DSM-5.”

 

No publication of field trial data

What the News Release fails to address is APA’s withholding of its field trial results while the third and final feedback exercise was in progress, other than releasing some Kappa data to press and conference at its Annual Meeting, in May. Professional stakeholders, advocacy organizations and lay public have been obliged to submit feedback on the third draft without the benefit of scrutiny of reliability and prevalence data to inform their submissions.

[See: Deborah Brauser for Medscape Medical News: interview with Darrel Regier, May 8, 2012 and reports by 1 Boring Old Man]

APA has given no indication of whether it still intends placing Kappa results and other field trial findings in the public domain or whether reports on its field trial findings will only be accessible at some point in the future published in subscription only or pay by the paper peer review journals, from which many stakeholders would be disenfranchised.

On June 17, I asked American Psychiatric Association’s CEO and Medical Director, Dr James H. Scully, why the field trial report was withheld; whether Task Force still intends placing field trial data in the public domain and when a report might be anticipated. I’ve received no response.

 

Collating submissions

I continue to collate copies of submissions from patient organizations, patients and advocates on these pages in response to the proposals of the Somatic Symptom Disorders Work Group. If professional body submissions include comment on this specific section of DSM-5, I would be interested in receiving copies with a view to publication of extracts or links to full submissions.

Given that thresholds for the Somatic Symptom Disorder criteria have been lowered for the third draft and given the implications for their constituencies, the response of US, UK and international patient organizations to calls for submissions in this third and final review was abysmal.

I’d like to thank patients, advocates and those organizations that did submit comment in response to the proposals of the Somatic Symptom Disorders Work Group.  I’d also like to thank Maarten Maartensz for his commentaries on DSM-5 proposals over the past two years.

 

APA News Release June 26, 2012 appended:

Open PDF Press Release No. 12-30

DSM-5 Draft Criteria Draws Nearly 2,300 Responses

Mental health diagnostic manual closes final public comment period

ARLINGTON, Va. (June 26, 2012) – The final public comment period for the draft diagnostic criteria of the upcoming Diagnostic and Statistical Manual of Mental Disorders (DSM-5) drew 2,298 responses from across the country and abroad. The six-week comment period ended June 15.

This feedback, submitted online to the American Psychiatric Association (APA), adds to the extensive responses submitted during the two other open comment periods. In total, more than 15,000 comments about the proposed DSM-5 criteria have been received since 2010 from mental health clinicians and researchers, the overall medical community, and patients, families and advocates. As was the case following the other comment periods, the DSM-5 Task Force and Work Groups will now review and consider each response as they begin final revisions to the criteria.

“Every comment period has provided valuable perspective from a wide range of professionals, consumers and advocates,” said APA President Dilip V. Jeste, MD. “We are grateful for their participation and willingness to review the draft proposals and to share their opinions and experiences. The Work Groups consider the feedback a huge asset as they shape the final DSM-5 proposals.”

Although each disorder area drew a wide range of comments, the two Work Groups with the highest number were the Neurodevelopmental Work Group (397 comments) and the Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic Stress and Dissociative Disorders Work Group (545 comments). APA also received more than 800 comments focused broadly on DSM-5.

After the Work Groups make their last revisions to the draft diagnostic criteria, the proposals will receive multi-level reviews by the entire DSM-5 Task Force, a separate Scientific Review Committee and a Clinical and Public Health Committee. The latter two committees will be working to evaluate the strength of scientific evidence supporting significant changes and to assess the impact of changes for clinicians and public health.

The Task Force will make recommendations to the APA Board of Trustees for its final decisions on the manual’s fifth edition late this year.

The American Psychiatric Association is a national medical specialty society whose more than 36,000 physicians specialize in the diagnosis, treatment prevention and research of mental illnesses, including substance abuse disorders. Visit the APA at www.psych.org  and www.healthyminds.org.

My Debate With The DSM 5 Chair: More Translations From ‘Newspeak’ by Allen Frances

My Debate With The DSM 5 Chair: More Translations From ‘Newspeak’ by Allen Frances, M.D.

Post #186 Shortlink: http://wp.me/pKrrB-2iI

Allen Frances, M.D. is professor emeritus at Duke University and chaired the task force that had oversight of the development of DSM-IV.

My Debate With The DSM 5 Chair
More Translations From ‘Newspeak’

Allen Frances M.D. | June 25, 2012

Recently, I voiced my concerns about DSM 5 in a Medscape interview with Dr Stephen Strakowski. DSM-5 Task Force Chair David Kupfer then entered the debate and provided his defense.

Here is my reply to Dr Kupfer:

I think ‘Newspeak’ is the best way to characterize the APA defense of DSM 5. For those who haven’t read George Orwell’s ‘1984’ lately, ‘Newspeak’ was his term for the kind of bureaucratic upside-down language that attempts to turn night into day. The idea is that if you say something enough times, the repetition will magically make it so.

Let’s do a quick back-translation from APA ‘newspeak’ to DSM 5 reality.

APA Newspeak: DSM 5 has been open and “transparent to an unprecedented degree.”

DSM 5 Reality: APA forced work group members to sign confidentiality agreements; has kept its ‘scientific’ review committee report secret; tries to censor the internet using bullying threats of trademark litigation; keeps secret the content of public input; and has not, as promised, provided more complete data sets from its failed field testing.

APA Newspeak: DSM 5 has been an “inclusive” process.

DSM 5 Reality: APA has rejected the input of 51 mental health associations requesting an open and independent scientific review of the controversial DSM 5 proposals; has not responded to highly critical editorials in the Lancet, New England Journal, New York Times, and many other publications; has ignored the unanimous opposition by the leading researchers in the field to its unusable personality disorder section; has ignored the opposition of sexual disorder researchers and forensic experts to its forensically dangerous paraphilia section; has brushed off outrage by consumer groups representing the bereaved and the autistic; has not made any changes in DSM 5 that can be associated with outside input- professional or public; and is unresponsive even to its own APA members, dozens of whom have told me they can’t get a straight (or any) answers from a staff whose salaries come from their dues.

APA Newspeak: “The stakes are far reaching: the first full revision since 1994 of the DSM, a document that influences the lives of millions of people around the world.”

DSM 5 Reality: APA quietly cancelled its own planned Stage 2 of field testing. Stage 2 was to provide quality control with much needed editing and retesting to demonstrate improved reliability. Canceling quality control was a crucial mistake and was done for one reason only-money. Because Stage 1 of the field trial was completed 18 months late, DSM 5 was running out of time in meeting its arbitrarily imposed publishing deadline. Given the choice of striving for quality or cashing in on publishing profits, APA went for the cash. Definitely dispiriting, but not surprising. APA is in deficit, has a budget that is totally dependent on the huge publishing profits from its DSM monopoly; and has wasted an absolutely remarkable $25 million in producing DSM 5 (DSM IV cost only one fifth as much). The simple reality is that APA is rushing a poor quality and unreliable DSM 5 to press purely for financial reasons and totally heedless of the detrimental effect this will have on “the lives of millions of people around the world.

APA Newspeak: “Charges that DSM-5 will lower diagnostic thresholds and lead to a higher prevalence of mental disorders are patently wrong. Results from our field trials, secondary data analyses, and other studies indicate that there will be essentially no change in the overall rates of disorders once DSM-5 is in use.”

DSM 5 Reality: DSM 5 made a fatal and unaccountable error in its field testing- it failed to measure the impact of any of its changes on rates and APA therefore has no meaningful data on this most important question. With the exception of autism, all of the suggested DSM 5 changes will definitely raise rates, some dramatically. Adding Binge Eating Disorder by itself would add more than ten million new ‘patients’; adding Disruptive Mood Dysregulation Disorder and Minor Neurocognitive Disorder would add millions; as would removing the bereavement exclusion to MDD and lowering thresholds for ADHD and GAD.

Read the full Medscape exchange for more Newspeak from Dr Kupfer, but you get the idea. It is not at all clear to me if APA talks Newspeak cynically, because of naivete, or because Newspeak is the language its expensive public relations consultants put in its mouth.

It doesn’t really matter why. Newspeak is devastating- not because anyone outside DSM 5 believes it (DSM 5 defenses are too transparently out of touch with reality to fool outsiders), but because APA may believe its own Newspeak or at least acts as if it does. Reflexive Newspeak, substituting for insight, has prevented DSM 5 from the serious self correction that would have saved it from itself. Bob Spitzer presciently predicted five years ago that a secretive, closed, defensive DSM 5 process would lead inevitably to this failed DSM 5 product.

Medscape has opened a physician-only discussion on the proposed DSM revision. If you are an MD and want to add your thoughts, you can do this at:

http://boards.medscape.com/forums/.2a3285ea/39

If you are a non-MD health care worker with an interest in psychiatric diagnosis, please add your thoughts at:

http://boards.medscape.com/forums/.2a32ceea

The public has a big stake in the outcome and can participate by commenting below. DSM 5 is very close to being set in stone. It may or may not do any good to speak up now, but this is a last chance for people to have their say.

Ed: Free registration is required for access to most areas of Medscape Medical News

APA closes third and final comment period: fails to publish field trial results

APA closes third and final comment period: fails to publish field trial results

Post #184 Shortlink: http://wp.me/pKrrB-2gs

So that’s it.

The third and final review of draft proposals for DSM-5 categories and criteria wrapped up last night.

APA closed the DSM-5 Development site for feedback around midnight without publishing its promised report on the DSM-5 field trial results.

Stakeholders have been obliged to submit feedback without the benefit of scrutinizing reliability data or any other information about the field trials APA had intended/may still intend/does not intend publishing.

James H. Scully, Jr., M.D., American Psychiatric Association CEO and Medical Director, blogs at Huffington Post.

I’ve asked Dr Scully why the report has been withheld; whether the Task Force still intends to publish field trial data and when that report might be anticipated.

If APA is so confidence about its field trial results, why the reluctance to place this data in the public domain?

In his Huff Po commentary of May 31, Dr Scully claimed:

“…DSM-5, unlike DSM-IV, invited comments from the world, and the work groups and task force considered every one of the more than 25,000 comments received and conducted further research where indicated.”

Following the first posting of draft proposals, out on review for ten weeks in spring 2010, APA reported receiving around 8,600 submissions; for the second review, around 2,120. I’m curious about this figure of “25,000 comments.”

I’ve asked Dr Scully, will he account for that figure of a total of 25,000 comments so far? I’ll update if Dr Scully responds.

According to Task Force Vice-Chair, Darrel Regier, M.D., the specific diagnostic categories that received the most comments during the second public review and feedback exercise had been the sexual and gender identity disorders, followed closely by somatic symptom disorders and anxiety disorders.

Following closure of the two previous public reviews, APA issued statements and articles. I will update with any statements that are released.

 

What now?

Content on the DSM-5 Development site (proposals for changes to categories, criteria, rationales, severity specifiers etc) is now frozen.

The site will not be updated to reflect any revisions and edits made between June 15 and submission of final texts, later this year, for approval by APA Board of Trustees.

The remainder of the development process is set out on the Home Page under “Next Steps” and in the APA Board Materials Packet – December 10-11, 2011. This document sets out the DSM-5 Development program from December 2011 until May 2013:

Open here: Item 11.A – DSM Task Force Report

According to APA’s newly published and highly restrictive DSM-5 Permissions Policy – following closure of this third and final public review and comment period, content of DSM-5 will be under strict embargo until the manual is published.

Final text is expected to be presented to APPI, the APA’s publishing arm, by December 31 for May 2013 publication.

I shall continue to update this site with any developments and with media coverage and commentary.

 

DSM-5 Round up

At DSM 5 in Distress, Allen Frances challenges “APA Newspeak”:

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

Top 10 Indicators Of DSM-5 Openness
Challenging APA newspeak.

Allen Frances, M.D. | June 15, 2012

In ‘1984’, George Orwell introduced the term ‘Newspeak’ – the abuse of language by totalitarian bureaucracies to create an upside down, looking glass world of misinformation. He was probably inspired by ‘Pravda,’ the Soviet Union’s propaganda paper that literally means ‘truth’ in Russian but was famous for publishing everything but.

This brings us to the American Psychiatric Association. Its medical director recently justified the astounding $25 million APA has already spent on DSM 5 (5 times the cost of DSM IV) with a curious claim- DSM 5 was so exorbitantly expensive because it was so unprecedentedly open. This classic Newspeak kills two truth birds with one stone — DSM 5 didn’t waste a huge amount of money and DSM 5 didn’t fail because it was a closed shop. The futile hope is that black will become white if only you say it enough times.

In fact, it is very cheap to run an open process — and very expensive to run a PR disinformation campaign. It cost me nothing but an hour’s time to write this blog. How much, I wonder, will it cost APA to pay off GYMR (its high powered public relations producer of newspeak pravda) to defend its indefensible claims that DSM 5 is an open process and that it can meet its unrealistic timetable with a reliable manual?

Here is a top 10 list of great moments in the history of APA ‘openness’.

1) APA forces work group members to sign confidentiality agreements to protect DSM 5 ‘intellectual property’.

2) DSM 5 does a confidential and super-secret ‘scientific’ review of itself- real science is never secret.

3) APA rebuffs calls from 51 mental health associations for an open and independent scientific review.

4) APA’s legal office tries to stifle criticism and censor the internet using inappropriate and bullying threats of trademark litigation.

5) APA plans to steeply jack up licensing costs for use of DSM criteria sets in order to recoup its unaccountably huge investment on its ‘intellectual property’.

6) DSM 5 only reluctantly engages on the issues and instead stonewalls criticism with offensive and defensive tactics.

7) The original DSM 5 plan for field trials included no prior public viewing of criteria sets and no period for public comment. These are added only under heavy outside pressure.

8) DSM 5 publishes no aggregations of key areas of concern identified during public reviews; doesn’t respond publicly to them and there is no indication that public input has had any impact whatever on DSM 5.

9) The APA ‘charitable’ foundation (meant to provide open public education) is named by a watchdog group as the 7th worst charity in all of the US.

10) APA promises to post a complete set of DSM 5 reliability data in time to allow comments during the final period of public review- but fails to do so.

And this is just a taster. At least a dozen reporters have spontaneously mentioned to me that never in their careers have they encountered anything so byzantine as the APA press office. And dozens of APA members have emailed their frustration at not being able to get a straight (or any) answer from a staff whose salaries are paid by their membership dues.

It requires lots of time, money, and brain power to create ‘pravda.’ Perhaps this explains why everything connected with DSM 5 is always so late and so expensive and why a high flying hired gun like GYMR is needed to run its interference. The real truth is fast, cheap, and very simple to explain.

Additional research is available at Suzy Chapman’s website. She monitors DSM-5 development at https://dxrevisionwatch.wordpress.com

 

On June 13, the American Counseling Association, representing 50,000 US counselors, published its submission to DSM-5:

ACA provides final comments on the DSM-5

ACA President Don W. Locke has sent the American Psychiatric Association a letter providing final comments for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Based on comments from ACA members and the ACA DSM Task Force, the letter acknowledges useful changes that had been made to previous drafts of the DSM-5: the development of the Cultural Formulation Outline, reversing the pathologizing of normal bereavement, and limiting the expansion of personality disorder types. ACA also calls for addressing the one-dimensional nature of the new Substance Use Disorder category and rejects the proposed dimensional assessments. Click here to view letter.

This is the third letter ACA has sent to the American Psychiatric Association providing feedback for the DSM-5. Click the links below to read the previous letters and a response from APA:

 
 
 

The DSM-5 Open Letter Committee of the Society for Humanistic Psychology, Division 32 of the American Psychological Association is publishing its response to the third draft :

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

As you know, the Open Letter Committee of the Society for Humanistic Psychology and the Coalition for DSM-5 Reform have been following the development of DSM-5 closely.

We appreciate the opportunity for public commentary on the most recent version of the DSM-5 draft proposals. We intend to submit this brief letter via the dsm5.org feedback portal and to post it for public viewing on our website at http://dsm5-reform.com/

Since its posting in October 2011, the Open Letter to the DSM-5, which was written in response to the second version of the draft proposals, has garnered support from almost 50 mental health organizations and over 13,500 individual mental health professionals and others.

Our three primary concerns in the letter were as follows: the DSM-5 proposals appear to lower diagnostic thresholds, expanding the purview of mental disorder to include normative reactions to life events; some new proposals (e.g., “Disruptive Mood Dysregulation Disorder” and “Attenuated Psychosis Syndrome”) seem to lack the empirical grounding necessary for inclusion in a scientific taxonomy; newly proposed disorders are particularly likely to be diagnosed in vulnerable populations, such as children and the elderly, for whom the over-prescription of powerful psychiatric drugs is already a growing nationwide problem; and the increased emphasis on medico-biological theories for mental disorder despite the fact that recent research strongly points to multifactorial etiologies.

We appreciate some of the changes made in this third version of the draft proposals, in particular the relegation of Attenuated Psychosis Syndrome and Mixed Anxiety-Depression to the Appendix for further research. We believe these disorders had insufficient empirical backing for inclusion in the manual itself. In addition, given the continuing elusiveness of biomarkers, we are relieved to find that you have proposed a modified definition of mental disorder that does not include the phrase “underlying psychobiological dysfunction.”

Despite these positive changes, we remain concerned about a number of the DSM-5 proposals, as well as the apparent setbacks in the development process.

Our continuing concerns are:

The proposal to include new disorders with relatively little empirical support and/or research literature that is relatively recent (e.g., Disruptive Mood Dysregulation Disorder)

The lowering of diagnostic thresholds, which may result in diagnostic expansion and various iatrogenic hazards, such as inappropriate treatment and stigmatization of normative life processes. Examples include the newly proposed Minor Neurocognitive Disorder, as well as proposed changes to Generalized Anxiety Disorder, Attention Deficit/Hyperactivity Disorder, Pedophilia, and the new behavioral addictions.

The perplexing Personality Disorders overhaul, which is an unnecessarily complex and idiosyncratic system that is likely to have little clinical utility in everyday practice.

The development of novel scales (e.g., severity scales) with little psychometric testing rather than utilizing established standards.

In addition, we are increasingly concerned about several aspects of the development process. These are:

Continuing delays, particularly in the drafting and field testing of the proposals.

The substandard results of the first set of field trials, which revealed kappas below accepted reliability standards.

The cancelation of the second set of field trials.

The lack of formal forensic review.

Ad hominem responses to critics.

The hiring of a PR firm to influence the interpretation and dissemination of information about DSM-5, which is not standard scientific practice.

We understand that there have been recent attempts to locate a “middle ground” between the DSM-5 proposals and DSM-5 criticism. We believe that, given the extremity and idiosyncrasy of some of the proposed changes to the manual, this claim of a “middle ground” is more rhetorical and polemic than empirical or measured. A true middle ground, we believe, would draw on medical ethics and scientific standards to revise the proposals in a careful way that prioritizes patient safety, especially protection against unnecessary treatment, above institutional needs.

Therefore, we would like to reiterate our call for an independent scientific review of the manual by professionals whose relationship to the DSM-5 Task Force and/or American Psychiatric Association does not constitute a conflict of interest.

As the deadline for the future manual approaches, we urge the DSM-5 Task Force and all concerned mental health professionals to examine the proposed manual with scientific and expert scrutiny.

It is not only our professional standards, but also –and most importantly– patient care that is at stake. We thank you for your time and serious consideration of our concerns, and we hope that you will continue to engage in dialogue with those calling for reform of DSM-5.

Sincerely,

The DSM-5 Open Letter Committee of the Society for Humanistic Society, Division 32 of the American Psychological Association

Final day: Submissions to third DSM-5 stakeholder review

Final day: Submissions to third DSM-5 stakeholder review

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

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

I am collating copies of submissions on these pages.

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

 

Submission from UK advocate Suzy Chapman

Full text in PDF:     Chapman DSM-5 submission 2012

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

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

Submission in response to J 00 Somatic Symptom Disorder

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

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

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

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

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

“…It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older 6 diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.”

Continued on Page 2

Patient submissions to third and final DSM-5 stakeholder review

Patient submissions to third and final DSM-5 stakeholder review

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

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

As with the two previous draft reviews, in 2010 and 2011, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site. Submissions will be published subject to review and posted in PDF format if more than a few pages long.

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

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

Full text in PDF:    DSM-5 submission

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

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

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

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

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

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

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

Final 2 days: Submissions to third DSM-5 stakeholder review

 

Final 2 days for Submissions to third DSM-5 stakeholder review

Post #181 Shortlink: http://wp.me/pKrrB-2eX

There are only Thursday and Friday left before this third and final stakeholder review of proposals for DSM-5 categories and diagnostic criteria closes.

APA has failed to publish “full results” of its field trials – obliging professional, patient and public stakeholders to submit comment without the benefit of scrutinizing field trial data. That’s another APA schedule missed.

If any extension to the comment period is announced I will update.

The DSM-5 Development site has been slow to load, today, probably due to volume of traffic for both US and UK visitors and in some cases, not loading at all. If you are having problems try pulling up a page other than the Home Page and allow several minutes to load.

As with the two previous reviews, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site, subject to review, and posted in PDF format if more than a few pages long.

The most recent published submission is from “Joss”:

Submission from UK patient, Joss

I am writing to voice my concerns concerning the proposed category of Somatic Symptom Disorder.

Theoreticians of illness classification such as yourselves should be aware of the actual harm that could be caused to real people should this category be included in the DSM.

I would like to focus your minds with a real world example of how such a label might cause actual harm:

In 1998 I hurt my back. A scan showed a herniated disc but no further action was considered necessary. For the next three years my life was devastated by pain, I had bedsores and was pissing myself in bed from being unable to move. I believe that this was not taken seriously because I already had a pre-existing diagnosis of ME/CFS. The disbelief around my ME/CFS had already caused me problems obtaining the necessary help from medical services.

I believe that doctors thought I was ‘catastrophising’ and that had the SSD label been available to them they would have been able to categorise me as having:

‘Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns’

and, further, apply the three following highly subjective statements to me:

(1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.

(2) Persistently high level of anxiety about health or symptoms

(3) Excessive time and energy devoted to these symptoms or health concerns

I had CBT via a pain clinic but things got progressively worse. The CBT was of no help because it can not mend discs. I was, I admit, by this time feeling a tad suicidal because nobody would listen to me or believe that things were as bad as they were.

In 2001 I called an ambulance and went to the emergency department. The doctor was fine until he consulted my notes and saw I had an ME/CFS diagnosis. I was given morphine and they wanted to send me home.

It was only by refusing to leave that I gained admission to the hospital where a further scan was undertaken and it was found that a piece of disc had got in to my spinal canal and was pressing on my spinal cord. The next day I was in surgery and told that I would have been paralysed for life without it.

I would like you to reflect on how much worse the situation might have been if I had also been labelled as having SSD and on what happens when the SSD label is wrongly applied.

If someone is very ill and in pain is it not normal to feel distressed? How much distress is too much? Who decides what the right amount of distress for any given situation is?

What does ‘disproportionate’ mean in such a situation?

Is feeling anxious about such things not simply a normal and sane reaction to such circumstances?

And as for ‘excessive time and energy’ – well being bedridden and unable to move for whatever reason makes it a little hard to think of much else for much of the time.

To take such a lack of understanding of subjective experience of severe physical symptoms and construct a spurious and vague illness category from them is not only philosophically flawed it is dangerous to those who may be labelled in such a way.

This definition is far too vague and leaves far too much room for definitional ‘creep’, misinterpretation, misuse and even abuse.

It could certainly lead to possible missed diagnosis should a patient be placed in the SSD group and then continually disbelieved because of the label and left with no hope of getting to the bottom of the problem. To leave people without hope can only be called cruel

I am concerned that many illnesses such as ME/CFS, fibromyalgia and pain syndromes, and back problems which are often hard to diagnose and treat and can be a considerable burden to those who have to live with them will get drawn into the SSD basket and that, once there, patients will lose all hope of receiving any appropriate bio-medical treatment.

I am sure you are aware that medicine does move forward and that many illnesses once defined as psychiatric or psychological or simply beyond the reach of scientific clarity are now no longer considered ‘medically unexplained’. Just because there is currently no ‘medical’ explanation for a specific symptom and no understanding of how somebody might experience that symptom does not automatically render it a problem for psychology or psychiatry.

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