Correspondence In Press in response to Dimsdale et al paper: Somatic Symptom Disorder: An important change in DSM

Post #284 Shortlink: http://wp.me/pKrrB-3yQ

Update: The four letters, below, published In Press in Journal of Psychosomatic Research are now published in the December 2013 issue:

Issue: Vol 75 | No. 6 | December 2013 | Pages 497-588

Update: Editorial by Michael Sharpe, DSM-5 Somatic symptom disorder Work Group member

http://bjp.rcpsych.org/content/203/5/320.abstract
http://bjp.rcpsych.org/content/203/5/320.full.pdf+html

Editorial: Somatic symptoms: beyond ‘medically unexplained’

BJP November 2013 203:320-321; doi: 10.1192/bjp.bp.112.122523

Michael Sharpe FRCPsych, Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford OX3 7JX, UK.

Abstract

Somatic symptoms may be classified as either ‘medically explained’ or ‘medically unexplained’ – the former being considered medical and the latter psychiatric. In healthcare systems focused on disease, this distinction has pragmatic value. However, new scientific evidence and psychiatric classification urge a more integrated approach with important implications for psychiatry.

A paper by DSM-5 Work Group members, Dimsdale JE, Creed F, Escobar J, Sharpe M, Wulsin L, Barsky A, Lee S, Irwin MR, Levenson J, titled Somatic Symptom Disorder: An important change in DSM, was published in the September issue of Journal of Psychosomatic Research.

There are four responses to this paper currently In Press. Subscription or payment is required to access the full text of these responses but the Dimsdale et al paper is now available free of charge:

http://www.jpsychores.com/inpress

http://www.jpsychores.com/article/S0022-3999(13)00345-0/fulltext

Correspondence

The somatic symptom disorder in DSM 5 risks mislabelling people with major medical diseases as mentally ill

DOI: 10.1016/j.jpsychores.2013.09.005

Winfried Häuser

Department of Internal Medicine I, Klinikum Saarbrücken, Saarbrücken, Germany
Department of Psychosomatic Medicine, Technische Universität München, München, Germany

Frederick Wolfe

National Data Bank for Rheumatic Diseases, Wichita, USA

In Press Corrected Proof Received 2 September 2013; accepted 25 September 2013. published online 28 October 2013.

Dimsdale and co-authors present data on the reliability, validity, and prevalence of the new DSM 5 category “Somatic Symptom disorder” (SSD) defined by persistent somatic symptoms in conjunction with…

http://www.jpsychores.com/inpress

http://www.jpsychores.com/article/S0022-3999(13)00349-8/fulltext

Correspondence

Diagnosis of somatic symptom disorder requires clinical judgment

DOI: 10.1016/j.jpsychores.2013.09.009

Joel E. Dimsdale

Department of Psychiatry, University of California, San Diego, United States
[Ed: DSM-5 SSD Work Group Chair]

James Levenson

Department of Psychiatry, Virginia Commonwealth University, United States
[Ed: DSM-5 SSD Work Group Member]

In Press Corrected Proof Received 27 September 2013; accepted 27 September 2013. published online 01 November 2013.

The diagnosis of somatic symptom disorder (SSD) rests on the presence of 3 factors—1. distressing and impairing somatic symptoms, 2. that are persistent at least 6 months, and 3. that are associated…

http://www.jpsychores.com/inpress

http://www.jpsychores.com/article/S0022-3999(13)00378-4/fulltext

Correspondence

A commentary on: Somatic symptom disorder: An important change in DSM

DOI:10.1016/j.jpsychores.2013.10.012

Winfried Rief

Clinical Psychology and Psychotherapy, University of Marburg, Marburg, Germany

Available online 1 November 2013

The songs of praise about DSM-5 and its innovations are disseminated through the media, and consequently, a positive evaluation of the new category of somatic symptom and associated disorders was published…

http://www.jpsychores.com/inpress

http://www.jpsychores.com/article/S0022-3999(13)00393-0/fulltext

Correspondence

Tradeoffs between validity and utility in the diagnosis of Somatic Symptom Disorder

DOI:10.1016/j.jpsychores.2013.10.015

Joel E. Dimsdale

Department of Psychiatry, University of California, San Diego, United States
[Ed: DSM-5 SSD Work Group Chair]

James Levenson

Department of Psychiatry, Virginia Commonwealth University, United States
[Ed: DSM-5 SSD Work Group Member]

Available online 31 October 2013

We appreciate the opportunity of responding to Professor Rief’s thoughtful letter concerning the thinking that guided our workgroup’s proposals for Somatic Symptom Disorder (SSD). When we started out…

in response to paper:

http://tinyurl.com/SSDPDFresearchgate [Download Free PDF from link on right of webpage.]

http://www.ncbi.nlm.nih.gov/pubmed/23972410

Somatic Symptom Disorder: An important change in DSM.

Dimsdale JE, Creed F, Escobar J, Sharpe M, Wulsin L, Barsky A, Lee S, Irwin MR, Levenson J.

J Psychosom Res. 2013 Sep;75(3):223-8. Epub 2013 Jul 25.

Abstract: http://www.jpsychores.com/article/S0022-3999(13)00265-1/abstract [Free]

Full text: http://www.jpsychores.com/article/S0022-3999(13)00265-1/fulltext

References: http://www.jpsychores.com/article/PIIS0022399913002651/references


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Commentaries on Somatic Symptom Disorder published in 2013 journal papers

In the June 2013 edition of Journal of Nervous and Mental Disorders, Allen Frances, MD, who chaired the Task Force for DSM-IV, discusses his concerns for the loosely defined DSM-5 category, Somatic Symptom Disorder, sets out his suggestions for revising the criteria prior to finalization, as presented to the SSD Work Group chair, in December 2012, and advises clinicians against using the new SSD diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/23719325

DSM-5 Somatic Symptom Disorder.

Frances A.

Department of Psychiatry, Duke University, Durham, NC.

J Nerv Ment Dis. 2013 Jun;201(6):530-1. doi: 10.1097/NMD.0b013e318294827c. No abstract available.

PMID: 23719325

+++

Commentary by Allen Frances, MD, and Suzy Chapman in the May 2012 issue of Australian and New Zealand Journal of Psychiatry. The paper discusses the over-inclusive DSM-5 Somatic Symptom Disorder criteria and the potential implications for diverse patient groups. The paper concludes by advising clinicians not to use the new SSD diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/23653063

DSM-5 somatic symptom disorder mislabels medical illness as mental disorder.

Allen Frances¹, Suzy Chapman²

1 Department of Psychiatry, Duke University 2 DxRevisionWatch.com

Aust N Z J Psychiatry. 2013 May;47(5):483-4. doi: 10.1177/0004867413484525. No abstract available.

PMID: 23653063

+++

The April 22, 2013 edition of Current Biology published a feature article on DSM-5 by science writer, Michael Gross, Ph.D. The article includes quotes from Allen Frances, MD, and Suzy Chapman on potential implications for patients for the application of the new DSM-5 Somatic Symptom Disorder. The article includes concerns for the influence of Somatic Symptom Disorder on proposals for a new ICD category – Bodily Distress Disorder – being field tested for ICD-11.

Current Biology 22 April, 2013 Volume 23, Issue 8

Copyright 2013 All rights reserved. Current Biology, Volume  23, Issue  8, R295-R298, 22 April 2013

doi:10.1016/j.cub.2013.04.009

Feature

Has the manual gone mental?

Michael Gross

Full text: http://www.cell.com/current-biology/fulltext/S0960-9822(13)00417-X

PDF: http://download.cell.com/current-biology/pdf/PIIS096098221300417X.pdf

+++

In a BMJ opinion piece, published March 2013, Allen Frances, MD, opposes the new Somatic Symptom Disorder, discusses lack of specificity, data from the field trials, and advises clinicians to ignore this new category.

PDF for full text

http://www.ncbi.nlm.nih.gov/pubmed/23511949

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill.

Frances A.

Allen Frances, chair of the DSM-IV task force

BMJ. 2013 Mar 18;346:f1580. doi: 10.1136/bmj.f1580. No abstract available.

PMID: 23511949

[PubMed – indexed for MEDLINE]

+++
Somatic Symptom Disorder is also included in Saving Normal: An Insider’s Revolt Against Out-Of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life (pp. 193-6): Allen Frances, William Morrow & Company (May 2013).

Also Essentials of Psychiatric Diagnosis: Responding to the Challenge of DSM-5 (Chapter 16): Allen Frances, Guilford Press (June 2013).

+++

Further reading

Objection to proposal to insert DSM-5′s Somatic symptom disorder into ICD-10-CM Suzy Chapman, Public submission, ICD-9-CM/PCS Coordination and Maintenance Committee Meeting September 18-19, 2013

APA Somatic Symptom Disorder Fact Sheet APA DSM-5 Resources

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

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill Allen Frances, MD, BMJ 2013;346:f1580 BMJ Press Release PDF for full text

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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DSM-5 Somatic Symptoms Disorders work group publishes SSD field trial data

Post #272 Shortlink: http://wp.me/pKrrB-3ke

Update: Somatic Symptom Disorder: An important change in DSM. is now published in the September 2013 issue, J Psychosom Res. A subscription or payment is required to access this paper.

http://www.ncbi.nlm.nih.gov/pubmed/23972410

J Psychosom Res. 2013 Sep;75(3):223-8. Epub 2013 Jul 25.
Dimsdale JE, Creed F, Escobar J, Sharpe M, Wulsin L, Barsky A, Lee S, Irwin MR, Levenson J.

DSM-5 Somatic Symptoms Disorders work group publishes SSD field trial data…behind a paywall

Reports on the findings of the DSM-5 field trials have been slow to emerge.

Kappa results trickled out in dribs and drabs; work group chairs presented limited field trial data at the APA’s 2012 Annual Meeting. There remains a paucity of information on field trial study protocols, patient selection, field test results and analysis.

This is of particular concern where radical changes to DSM-IV definitions and criteria were introduced into DSM-5 and are now out there in the field.

A good example is the new DSM-5 “Somatic Symptom Disorder” category, where there is no substantial body of evidence for the reliability, validity, prevalence, safety, acceptability and clinical utility of the implementation of this new disorder construct – though that did not stop them barrelling it through to the final draft.

In its paper, the SSD Work Group acknowledges the “small amount of validity data concerning SSD”; that much “remains to be determined” about the utility and reliability of the specific SSD criteria and its thresholds when applied in busy, general clinical practice and that there are “vital questions that must be answered” as they go forward.

They don’t sound any too confident about what they’ve barrelled through; but neither do they seem overly concerned.

With remarkable insouciance, SSD Work Group Chair, Joel E Dimsdale, told ABC journalist, Susan Donaldson James, “…If it doesn’t work, we’ll fix it in the DSM-5.1 or DSM-6.” (ABC News, February 27, 2013).

Cavia15The implementation of SSD in the DSM-5 is a Beta trial; the public – adults and children – unwitting guinea pigs.

Members of the DSM-5 Somatic Symptoms Disorders Work Group have just published a report – Somatic Symptom Disorder: An important change in DSM.

APA owns the output of the DSM-5 work groups but this report isn’t posted on the APA’s DSM-5 Development site or on the Field Trials or DSM-5 Resources pages.

It’s being published (currently In Press) in the Journal of Psychosomatic Research, for which DSM-5 SSD Work Group member, James Levenson, is a Co-Editor and for which SSD Work Group member, Francis Creed, a past Editor.

Unless you are a subscriber to JPS or have institution access you will need to cough up $30 to access this paper.

DSM-5 Task Force’s Regier and Kupfer have been banging on for years about how transparent the development process for this most recent iteration of the DSM has been. Yet reports on field trial findings and analysis of studies cited in support of the introduction of radical new constructs for DSM are stuffed behind paywalls.

Why are DSM-5 work group reports not being published on the DSM-5 Development website or other APA platforms or published in journals under Creative Commons Licenses, for ease of public accessibility, professional and consumer stakeholder scrutiny and discussion, and for accountability?

The development of ICD-11 is also being promoted by WHO’s Bedirhan Üstün as an open and transparent process.

But emerging proposals from the two working groups charged with making recommendations for revision of ICD-10′s Somatoform Disorders (the Primary Care Consultation Group, chaired by Prof Sir David Goldberg and the WHO Expert Working Group on Somatic Distress and Dissociative Disorders, chaired by Prof Oje Gureje) were also published, last year, in subscription journals and subject to those journals’ respective copyright restrictions [1] [2].

1. Lam TP et al. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract. 2013 Feb;30(1):76-87. [Abstract: PMID:22843638]
2. Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67. [Abstract: PMID: 23244611]

Why are ICD-11 working group progress reports on emerging proposals for potential new ICD disorders and focus group study reports not being published on platforms accessible, without payment, to all classes of ICD stakeholder?

The SSD Work Group paper is authored by Joel E Dimsdale (Chair), Francis Creed, Javier Escobar, Michael Sharpe, Lawson Wulsin, Arthur Barsky, Sing Lee, Michael R. Irwin and James Levenson.

[Although not a member of the SSD Work Group, Javier Escobar is Task Force liaison to the SSD work group and works closely with the group. Francis J Keefe (not included in the paper’s authors) is a member of the SSD Work Group. Nancy Frasure-Smith (not included in the paper’s authors) served as a member of the Work Group from 2007-2011 and was not replaced following withdrawal.]

The paper describes the DSM-5 Work Group’s rationale for the new SSD diagnosis (which replaces four DSM-IV categories); defines the construct, discusses field trial kappa data (inter-rater reliability), presents limited data for validity of SSD, clinical utility and potential prevalence rates, and briefly discusses tasks for future research, education and clinical practice.

http://www.jpsychores.com/

July 2013, Vol. 75, No. 1

In Press

Somatic Symptom Disorder: An important change in DSM

29 July 2013

Joel E. Dimsdale, Francis Creed, Javier Escobar, Michael Sharpe, Lawson Wulsin, Arthur Barsky, Sing Lee, Michael R. Irwin, James Levenson

Received 4 April 2013; received in revised form 27 June 2013; accepted 29 June 2013. published online 29 July 2013.

Corrected Proof

doi:10.1016/j.jpsychores.2013.06.033

Abstract: http://www.jpsychores.com/article/S0022-3999(13)00265-1/abstract [Free]

Full text: http://www.jpsychores.com/article/S0022-3999(13)00265-1/fulltext  [Paywall]

References: http://www.jpsychores.com/article/PIIS0022399913002651/references  [Paywall]


Commentaries on Somatic Symptom Disorder in recent journal papers

In the June 2013 edition of Journal of Nervous and Mental Disorders, Allen Frances, MD, who chaired the Task Force for DSM-IV, discusses his concerns for the loosely defined DSM-5 category, Somatic Symptom Disorder, sets out his suggestions for revising the criteria prior to finalization, as presented to the SSD Work Group chair, in December 2012, and advises clinicians against using the new SSD diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/23719325

DSM-5 Somatic Symptom Disorder.

Frances A.

Department of Psychiatry, Duke University, Durham, NC.

J Nerv Ment Dis. 2013 Jun;201(6):530-1. doi: 10.1097/NMD.0b013e318294827c. No abstract available.

PMID: 23719325

+++

Commentary by Allen Frances, MD, and Suzy Chapman in the May 2012 issue of Australian and New Zealand Journal of Psychiatry. The paper discusses the over-inclusive DSM-5 Somatic Symptom Disorder criteria and the potential implications for diverse patient groups. The paper concludes by advising clinicians not to use the new SSD diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/23653063

DSM-5 somatic symptom disorder mislabels medical illness as mental disorder.

Allen Frances¹, Suzy Chapman²

1 Department of Psychiatry, Duke University 2 DxRevisionWatch.com

Aust N Z J Psychiatry. 2013 May;47(5):483-4. doi: 10.1177/0004867413484525. No abstract available.

PMID: 23653063

+++

The April 22, 2013 edition of Current Biology published a feature article on DSM-5 by science writer, Michael Gross, Ph.D. The article includes quotes from Allen Frances, MD, and Suzy Chapman on potential implications for patients for the application of the new DSM-5 Somatic Symptom Disorder. The article includes concerns for the influence of Somatic Symptom Disorder on proposals for a new ICD category – Bodily Distress Disorder – being field tested for ICD-11.

Current Biology 22 April, 2013 Volume 23, Issue 8

Copyright 2013 All rights reserved. Current Biology, Volume  23, Issue  8, R295-R298, 22 April 2013

doi:10.1016/j.cub.2013.04.009

Feature

Has the manual gone mental?

Michael Gross

Full text: http://www.cell.com/current-biology/fulltext/S0960-9822(13)00417-X

PDF: http://download.cell.com/current-biology/pdf/PIIS096098221300417X.pdf

+++

In a BMJ opinion piece, published March 2013, Allen Frances, MD, opposes the new Somatic Symptom Disorder, discusses lack of specificity, data from the field trials, and advises clinicians to ignore this new category.

http://www.ncbi.nlm.nih.gov/pubmed/23511949

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill.

Frances A.

Allen Frances, chair of the DSM-IV task force

BMJ. 2013 Mar 18;346:f1580. doi: 10.1136/bmj.f1580. No abstract available.

PMID: 23511949

[PubMed – indexed for MEDLINE]

+++
Somatic Symptom Disorder is also included in Saving Normal: An Insider’s Revolt Against Out-Of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life (pp. 193-6): Allen Frances, William Morrow & Company (May 2013).

Also Essentials of Psychiatric Diagnosis: Responding to the Challenge of DSM-5 (Chapter 16): Allen Frances, Guilford Press (June 2013).

+++

Further reading

APA Somatic Symptom Disorder Fact Sheet APA DSM-5 Resources

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

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill Allen Frances, MD, BMJ 2013;346:f1580 BMJ Press Release

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]

DSM-5 Round up: November #1

DSM-5 Round up: November #1

Post #207 Shortlink: http://wp.me/pKrrB-2vW

Huffington Post Blog

David J. Kupfer, MD | Chair, DSM-5 Task Force | November 7, 2012

Field Trial Results Guide DSM Recommendations

Written with Helena C. Kraemer, Ph.D.

Two years ago this month, APA announced the start of field trials that would subject proposed diagnostic criteria for the future DSM-5 to rigorous, empirically sound evaluation across diverse clinical settings. And now, as the first comprehensive analyses of that effort are published, what’s clear is just how well the field trials did their job…

Full commentary

1 Boring Old Man

OMG!…

1 Boring Old Man | November 9, 2012

Side Effects

From quirky to serious, trends in psychology and psychiatry

by Christopher Lane, Ph.D.

The DSM-5 Field Trials’ Decidedly Mixed Results

Far from being a ringing endorsement, the field trials set off fresh alarm bells

Christopher Lane, Ph.D. | November 11, 2012

“What’s the chance that a second, equally expert diagnosis will agree with the first, making a particular diagnosis reliable?” asks David Kupfer, chair of the DSM-5 task force, of the decidedly mixed results of the DSM-5 field trials. First off, are you sure you really want to know?…

Full commentary

http://www.psychologytoday.com/blog/dsm5-in-distress/201211/you-cant-turn-sows-ear-silk-purse

also here on Psychiatric Times (registration required):

http://www.psychiatrictimes.com/blog/frances/content/article/10168/2113993

You Can’t Turn a Sow’s Ear Into a Silk Purse

By Allen Frances, MD | November 11, 2012

In his recent Huffington Post piece titled Field Trial Results Guide DSM Recommendations,1 DSM-5 Task Force Chair Dr David Kupfer says, “What’s clear is just how well the field trials did their job.” This surprisingly optimistic claim has inspired these telling rejoinders from Mickey Nardo, MD, and Barney Carroll, MD, 2 of the best informed critics of DSM-5.

Dr Nardo first: “The absence of biological tests in psychiatry is unique in medicine and sentences the classification of mental disorders to endless controversy. In the 1970s, Dr Robert Spitzer proposed we use inter-rater reliability as a stand in for objective tests. His statistician colleagues developed a simple measure (called ‘kappa’) to indicate the level of diagnostic agreement corrected for chance. In 1974, Spitzer reported on 5 studies that clearly exposed the unreliability of DSM-II, the official diagnostic system at the time.

“To correct this problem and obtain the diagnostic agreement necessary for research studies, Spitzer then set about constructing sets of diagnostic criteria meant to tap overt signs and symptoms, rather than the more inferential mechanisms that informed DSM-II. He also developed structured clinical interviews that provided a uniform method of assessment. These approaches worked well to improve the poor kappas obtained using the free form approach of DSM-II.

“In 1980, Spitzer took the next big step of introducing the criterion based method of diagnosis into DSM-III. What had originated as a research tool now informed all clinical practice. It was an important milestone for psychiatry when DSM-III field testing showed that the system achieved good kappas. The new manual was an instant success throughout the mental health professions and brought a measure of objectivity to a field previously dominated by warring subjective opinions. Later, in 1994, DSM-IV was also able to demonstrate good kappas in its much more extensive field testing.

“The DSM-5 Task Force originally planned two sets of field trials, the second of which was meant to provide quality control to correct whatever weaknesses would be exposed in the first. But along the way, the field testing got far behind its schedule and the quality control step was quietly cancelled. No explanation was ever offered, but it seemed likely that DSM-5 was being rushed to press so that APA could reap publishing profits.

“Dr David Kupfer now wants us to believe that the recently published results of the DSM-5 field testing somehow serve to justify the inclusion in DSM 5 of extremely controversial and much feared changes. This is a terribly misleading claim. Independent of all the other criticisms of DSM-5 (and there are plenty), the poor results of the field trials must have been a major disappointment to the Task Force. Dr Kupfer is now making a desperate attempt to salvage the failed project by putting an unrealistically positive spin on its results.

“Our forty-year experience in reliability testing for DSM-II, the RDC, DSM-III, and DSM-IV makes clear what are acceptable and what are unacceptable kappa levels. There is no way of avoiding or cloaking the stark and troubling fact that the DSM-5 field trials produced remarkably low kappas—harking back to the bad old days of DSM-II.

[see http://1boringoldman.com/index.php/2012/10/31/humility-2/ ].

“Equally disturbing, three of the eight diagnoses tested at multiple centers had widely divergent kappa values at the different sites—hardly a vote for their reliability. Even worse, two major diagnostic categories [Major Depressive Disorder and Generalized Anxiety Disorder] performed terribly, in a range that is clearly unacceptable by anybody’s standard.

[see http://1boringoldman.com/index.php/2012/10/31/but-this-is-ridiculous/ ].

“Dr Kupfer has been forced to drastically lower our expectations in an effort to somehow justify the remarkably poor and scattered DSM-5 kappa results. There is, in fact, only one possible explanation for the results—the DSM-5 field trials were poorly designed and incompetently administered. Scientific integrity requires owning up to the defects of the study, rather than asking us to deviate from historical standards of what is considered acceptable reliability. It is not cricket to lower the target kappas after the study results fail to meet reasonable expectations.

“Diagnostic agreement is the bedrock of our system—a non-negotiable bottom line. The simple truth is that by historical standards, the DSM-5 field trials did not pass muster. Dr Kupfer can’t expect to turn this sow’s ear into a silk purse.”

Dr Carroll adds this: “The purpose of DSM-5 is to have criteria that can be used reliably across the country and around the world. The puzzling variability of results across the sites in the DSM-5 field trials is a major problem. Let’s take just one of many examples—for Bipolar I Disorder, the Mayo Clinic came in with a very good kappa value of 0.73 whereas the San Antonio site came in with a really lousy kappa of 0.27. You can’t just gloss over this gaping discrepancy by reporting a mean value. The inconsistencies across sites have nothing to do with the criteria tested—they are instead prima facie evidence of unacceptably poor execution of the study protocol. The inconsistent results prove that something clearly wasn’t right in how the study was done.

“The appropriate response is to go back to the drawing board by completing the originally planned quality control second stage of testing—rather than barreling ahead to premature publication and pretending that everything is just fine when it is not. The DSM-5 leaders have lowered the goal posts and are claiming a bogus sophistication for their field trials design as an excuse for its sloppy implementation. But a low kappa is a low kappa no matter how you try to disguise it. Dr Kupfer is putting lipstick on the pig.

“Many people experience a glazing of the eyes when the term kappa appears, but it’s really a simple idea. The kappa value tells us how far we have moved from completely random agreement (a kappa of 0) to completely perfect agreement (a kappa of 1.0). The low end of kappas that DSM-5 wants us to find acceptable are barely better than blind raters throwing random darts. If there is this much slop in the system when tested at academic centers, imagine how bad things will become in the real world of busy and less specialized clinical practice.

“Something isn’t right . . . and when something isn’t right in a matter as serious as psychiatric diagnosis the professional duty is to fix it. Having shirked this responsibility, APA deserves to fail in the business enterprise that it has made of DSM-5. If ever there was a clear conflict of interest, this is it.”

Thanks are due to Drs Nardo and Carroll. There can be no doubt that the DSM-5 Field Trials were a colossal waste of money, time, and effort. First off, they didn’t ask the most obvious and important question—What are the risks that DSM-5 will create millions of misidentified new ‘patients’ who would then be subjected to unnecessary treatment? Second, the results on the question it did ask (about diagnostic reliability) are so all over the map that they are completely uninterpretable. And to top it off, DSM-5 cancelled the quality control stage that might have cleaned up the mess.

It is almost certain that DSM-5 will be a dangerous contributor to our already existing problems of diagnostic inflation and inappropriate prescription of psychotropic drugs. The DSM-5 leadership is trying to put a brave face on its badly failed first stage of field testing and has offered no excuse or explanation for canceling its second and most crucial quality control stage. This field testing fiasco erases whatever was left of the credibility of DSM-5 and APA.

Reference

1. Kupfer DJ. Field trial results guide DSM recommendations. Huffington Post. November 7, 2012. http://www.huffingtonpost.com/david-j-kupfer-md/dsm-5_b_2083092.html . Accessed November 13, 2012.

Nature News Blog

DSM field trials inflame debate over psychiatric testing

05 Nov 2012 | 15:00 GMT | Posted by Heidi Ledford | Category: Health and medicine

As the latest revision of a key psychiatric tome nears completion, field trials of its diagnoses have prompted key changes to controversial diagnoses and sparked questions as to how such trials should be conducted…

Read on

Aging Well – News & Insight for Professionals in Geriatric Medicine

Dementia and DSM-5:

Changes, Cost, and Confusion

James Siberski, MS, CMC

Aging Well, Vol. 5 No. 6 P. 12

DSM-5 changes will require providers to learn the differences between major and minor neurocognitive disorders and to explain the differences and their significance to patients and their families.

The Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association and used for diagnosis by mental health professionals in the United States, describes symptoms for all mental disorders. Its primary components are the diagnostic classifications, diagnostic criteria sets, and descriptive texts. DSM-I was initially approved in 1951 and published the following year. Since then it has been revised several times and resulted in DSM-II in 1968, DSM-III in 1980, DSM-III-R in 1987, DSM-IV in 1994, and the current version, DSM-IV-TR, in 2000. Historically, it has been both praised and criticized…

Full article

Health Care Renewal

DOES AMERICAN PSYCHIATRY MATTER?

Bernard Carroll, MD | November 03, 2012

…What lies ahead? Stakeholders are going to vote with their feet. DSM-5 is likely to be a footnote in the history of psychiatric classification. The APA will become even less relevant than it is today, much like the American Medical Association, which now commands the loyalty of maybe 30% of U.S. physicians….

Full commentary

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

Three professional organization responses to third and final DSM-5 stakeholder review

Three professional organization responses to the third and final DSM-5 stakeholder review

Post #185 Shortlink: http://wp.me/pKrrB-2hS

According to DSM-5 Task Force Vice-chair, Darrel Regier M.D., the specific diagnostic categories that received most comments during the second public review of draft proposals (May-June 2011) were the sexual and gender identity disorders, followed closely by somatic symptom disorders and anxiety disorders.

The American Psychiatric Association (APA) has yet to report how many comments the DSM-5 Task Force and its 13 Work Groups received during this third and final review period (which closed last Friday), or which categories garnered the most responses, this year.

 

No publication of field trial data

Following posting of the third draft on May 2, it was anticipated APA would publish full results from the DSM-5 field trials “within a month”. [Source: Deborah Brauser for Medscape Medical News: interview with Darrel Regier, May 8, 2012.]

No report emerged and stakeholders had little choice but submit feedback on this latest iteration without the benefit of scrutiny of reliability data to inform their submissions.

APA has yet to account for its failure to place its field trial results in the public domain while the feedback exercise was in progress, other than releasing some Kappa data at its May 5-9 Annual Conference.

American Psychiatric Association CEO and Medical Director, James H. Scully, Jr., M.D., blogs at Huffington Post. Last week, I asked Dr Scully why the field trial report has been withheld; whether Task Force still intends publishing field trial data and when that report might now be anticipated. 

I’ve received no response from Dr Scully and APA has put out no clarification.

 

No publication of list of Written Submissions

These three DSM-5 public reviews of draft proposals for changes to DSM-IV categories and criteria have not been managed as formal stakeholder consultation exercises.

APA publishes no aggregations of key areas of concern identified during public comment periods nor publishes Work Group or Task Force responses to key areas of professional or lay public concern on the DSM-5 Development website  – an issue I raised with the Task Force during both the first and second reviews.

Although some published submissions (ACA, British Psychological Society and the DSM-5 Reform Open Letter and Petition Committee) have received responses from the Task Force and which APA has elected to place in the public domain, submissions from the majority of professional bodies and organizations disappear into a black hole.

In the interests of transparency, APA could usefully publish lists of the names of US and international professional bodies, academic institutions, patient advocacy organizations etc. that have submitted comments, in the way that Written Submissions are listed in the annexes to reports and public inquiries.

That way, interested parties might at least approach organizations to request copies of submissions or suggest that these are placed in the public domain.

APA could not legitimately claim it would require permissions before publishing full lists of the names of professional body, academic institution and organization respondents that tendered formal responses – its legal department’s boilerplate Terms and Conditions of Use gives APA carte blanche to make use of and publish uploaded submissions in any way it sees fit.*

*See Terms and Conditions of Use, under “User Submissions” 

 

The following have released their submissions in response to the third draft:

Submission from The American Mental Health Counselors Association (AMHCA)

The American Mental Health Counselors Association is a nationwide organization representing 6,000 clinical mental health counselors. Their submission includes concerns for the lowering of the “B type” threshold requirement for “Somatic Symptom Disorder” criteria between the second and third drafts.

[In the CSSD field trials, about 15% of the “diagnosed illness” study group (patients with cancer and coronary disease) met the criteria for coding with an additional mental health diagnosis of “SSD” when “one B type” cognition was required; about 10% met the criteria when “two B type” were required. About 26% of the “functional somatic” arm of the study group (patients with irritable bowel and “chronic widespread pain” – a term used synonymously with fibromyalgia) met the criteria for coding with an additional mental health diagnosis of “SSD” when “one B type” cognition was required; about 13% met the criteria when “two B type” were required. AMHCA recommends raising the threshold back to at least two from the three B type criteria, as the criteria for CSSD had stood for the second draft. I consider the category of “SSD” should be rejected in the absence of a substantial body of independent evidence for the reliability, validity and safety of “SSD” as a construct.]

AMHCA Submits Comments on DSM-5 06/19/12

June 18, 2012 – Alexandria, VA – The DSM-5 Task Force of the American Mental Health Counselors Association (AMHCA) has submitted comments for the third period of public comment on the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

AMHCA’s comments addressed 12 disorder categories and the Cultural Formulation Interview Guide. Per the site requirements, each was sent separately to the particular disorder site.

    Download compilation of comments submitted by AMHCA DSM-5 Task Force

Somatic Symptom Disorders

“Somatic Symptom Disorder

“A major change in this revision is the merger of Complex Somatic Symptom Disorder and Simple Somatic Symptom Disorder into one disorder, Somatic Symptom Disorder. The increased emphasis placed on cognitive distortions (along with the presence of somatic symptoms ) provides greater clarity about the nature of the disorder. However, the notion that a single B.2 criteria could be used as the sole basis for identifying these cognitive aspects seems to open the door to diagnosing individuals who have legitimate “high anxiety” about their symptoms. We recommend considering “two of three” criteria under B be required.”

 

The British Psychological Society writes:

The British Psychological Society still has concerns over DSM-V

…For all the reasons stated above, the BPS, having reviewed the currently proposed revisions of the new diagnostic criteria in DSM 5, continues to have major concerns. These have, if anything, been increased by the very poor reliabilities achieved in many of the recent field trials (Huffington Post, 2012), especially given the limited time available to attempt to achieve more satisfactory outcomes. Since validity depends, at the very least, on acceptable levels of reliability, the unavoidable conclusion is that many of the most frequently-used categories will be unable to fulfil their purported purposes, i.e. identification of appropriate treatments, signposting to support, providing a basis for research…

Read full submission to third draft here in PDF format.

Response to second draft here.

Christopher Lane comments:

Psychology Today | Side Effects

Arguing Over DSM-5: The British Psychological Society Has Serious Concerns About the Manual

The BPS expresses “serious reservations” about the next DSM.

Christopher Lane, Ph.D. in Side Effects | June 20, 2012

Although the American Psychiatric Association recently closed its window allowing comments on proposed changes to the DSM, the organization has yet to report on the field trials it devised for the next edition of the psychiatric manual, themselves meant to support—indeed, serve as a rationale for—the changes it is proposing in the first place.

While this unhappy outcome points to some of the organization’s chicken-and-egg problems with the manual and the disorders it is seeking to adjust or make official, those wanting to respond to the draft proposals have had to do so in the dark, unaware of the results of the field trials and thus whether the proposals draw from them any actual empirical support…

Read on

 

Submission from American Counseling Association (ACA)

The American Counseling Association (ACA), represents more than 50,000 counselors – one of the largest groups of DSM-5 users in the US.

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:

Letter from President Lynn Linde, April 16, 2010

Letter from President Don Locke, November 8, 2011

Response from APA President John Oldham, November 21, 2011

 

Submission by Coalition for DSM-5 Reform Committee

The Coalition for DSM-5 Reform Open Letter and Petition has garnered support from over 13,700 professionals and concerned stakeholders and the endorsement of nearly 50 organizations, since launching last October.

The DSM-5 Reform Committee continues to call for independent scientific review of draft proposals and submitted the following response during this third and final comment period:

Submission from Coalition for DSM-5 Reform (Society for Humanistic Psychology)Division 32 of the American Psychological Association)

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 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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