The six most essential questions in psychiatric diagnosis: a pluralogue: conceptual and definitional issues in psychiatric diagnosis Parts 1 and 2

April 27, 2012 by

The six most essential questions in psychiatric diagnosis: a pluralogue: conceptual and definitional issues in psychiatric diagnosis, Parts 1 and 2

Post #161 Shortlink: http://wp.me/pKrrB-248

Below, I am posting the Abstract and Introduction to Parts 1 and 2 of Philos Ethics Humanit Med Review “The six most essential questions in psychiatric diagnosis: a pluralogue: conceptual and definitional issues in psychiatric diagnosis.”

Part 1 of this Review was published on January 13, 2012; Part 2 was published (as a provisional PDF) on April 18, 2012. I will post Part 3 when it becomes available.

Below Parts 1 and 2, I have posted the PDFs for Phillips J (ed): Symposium on DSM-5: Part 1. Bulletin of the Association for the Advancement of Philosophy and Psychiatry 2010, 17(1):1–26 and Phillips J (ed): Symposium on DSM-5: Part 2. Bulletin of the Association for the Advancement of Philosophy and Psychiatry 2010, 17(2):1–75 out of which grew the concept for the Philos Ethics Humanit Med Review Parts 1 and 2.

This is an interesting series of exchanges which expand on conceptual and definitional issues discussed in these two Bulletins but these are quite lengthy documents, 29 and 30 pp, respectively; PDFs are provided rather than full texts.

Review Part One

The six most essential questions in psychiatric diagnosis: a pluralogue part 1: conceptual and definitional issues in psychiatric diagnosis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3305603/

Philos Ethics Humanit Med. 2012; 7: 3.
Published online 2012 January 13. doi: 10.1186/1747-5341-7-3 PMCID: PMC3305603

Copyright ©2012 Phillips et al; licensee BioMed Central Ltd.
Received August 15, 2011; Accepted January 13, 2012.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

      The six most essential questions Part 1

or: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3305603/pdf/1747-5341-7-3.pdf

Html: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3305603/

or http://www.peh-med.com/content/7/1/3

James Phillips,corresponding author1 Allen Frances,2 Michael A Cerullo,3 John Chardavoyne,1 Hannah S Decker,4 Michael B First,5 Nassir Ghaemi,6 Gary Greenberg,7 Andrew C Hinderliter,8 Warren A Kinghorn,2,9 Steven G LoBello,10 Elliott B Martin,1 Aaron L Mishara,11 Joel Paris,12 Joseph M Pierre,13,14 Ronald W Pies,6,15 Harold A Pincus,5,16,17,18 Douglas Porter,19 Claire Pouncey,20 Michael A Schwartz,21 Thomas Szasz,15 Jerome C Wakefield,22,23 G Scott Waterman,24 Owen Whooley,25 and Peter Zachar10
 
1Department of Psychiatry, Yale School of Medicine, 300 George St., Suite 901, New Haven, CT 06511, USA
2Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, 508 Fulton St., Durham, NC 27710, USA
3Department of Psychiatry and Behavioral Neuroscience, University of Cincinnati College of Medicine, 260 Stetson Street, Suite 3200, Cincinnati, OH 45219, USA
4Department of History, University of Houston, 524 Agnes Arnold, Houston, 77204, USA
5Department of Psychiatry, Columbia University College of Physicians and Surgeons, Division of Clinical Phenomenology, New York State Psychiatric Institute, 1051 Riverside Drive, New York, NY 10032, USA
6Department of Psychiatry, Tufts Medical Center, 800 Washington Street, Boston, MA 02111, USA
7Human Relations Counseling Service, 400 Bayonet Street Suite #202, New London, CT 06320, USA
8Department of Linguistics, University of Illinois, Urbana-Champaign 4080 Foreign Languages Building, 707 S Mathews Ave, Urbana, IL 61801, USA
9Duke Divinity School, Box 90968, Durham, NC 27708, USA
10Department of Psychology, Auburn University Montgomery, 7061 Senators Drive, Montgomery, AL 36117, USA
11Department of Clinical Psychology, The Chicago School of Professional Psychology, 325 North Wells Street, Chicago IL, 60654, USA
12Institute of Community and Family Psychiatry, SMBD-Jewish General Hospital, Department of Psychiatry, McGill University, 4333 cote Ste. Catherine, Montreal H3T1E4 Quebec, Canada
13Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine at UCLA, 760 Westwood Plaza, Los Angeles, CA 90095, USA
14VA West Los Angeles Healthcare Center, 11301 Wilshire Blvd, Los Angeles, CA 90073, USA
15Department of Psychiatry, SUNY Upstate Medical University, 750 East Adams St., #343CWB, Syracuse, NY 13210, USA
16Irving Institute for Clinical and Translational Research, Columbia University Medical Center, 630 West 168th Street, New York, NY 10032, USA
17New York Presbyterian Hospital, 1051 Riverside Drive, Unit 09, New York, NY 10032, USA
18Rand Corporation, 1776 Main St Santa Monica, California 90401, USA
19Central City Behavioral Health Center, 2221 Philip Street, New Orleans, LA 70113, USA
20Center for Bioethics, University of Pennsylvania, 3401 Market Street, Suite 320 Philadelphia, PA 19104, USA
21Department of Psychiatry, Texas AMHSC College of Medicine, 4110 Guadalupe Street, Austin, Texas 78751, USA
22Silver School of Social Work, New York University, 1 Washington Square North, New York, NY 10003, USA
23Department of Psychiatry, NYU Langone Medical Center, 550 First Ave, New York, NY 10016, USA
24Department of Psychiatry, University of Vermont College of Medicine, 89 Beaumont Avenue, Given Courtyard N104, Burlington, Vermont 05405, USA
25Institute for Health, Health Care Policy, and Aging Research, Rutgers, the State University of New Jersey, 112 Paterson St., New Brunswick, NJ 08901, USA

Abstract

In face of the multiple controversies surrounding the DSM process in general and the development of DSM-5 in particular, we have organized a discussion around what we consider six essential questions in further work on the DSM. The six questions involve: 1) the nature of a mental disorder; 2) the definition of mental disorder; 3) the issue of whether, in the current state of psychiatric science, DSM-5 should assume a cautious, conservative posture or an assertive, transformative posture; 4) the role of pragmatic considerations in the construction of DSM-5; 5) the issue of utility of the DSM – whether DSM-III and IV have been designed more for clinicians or researchers, and how this conflict should be dealt with in the new manual; and 6) the possibility and advisability, given all the problems with DSM-III and IV, of designing a different diagnostic system. Part I of this article will take up the first two questions. With the first question, invited commentators express a range of opinion regarding the nature of psychiatric disorders, loosely divided into a realist position that the diagnostic categories represent real diseases that we can accurately name and know with our perceptual abilities, a middle, nominalist position that psychiatric disorders do exist in the real world but that our diagnostic categories are constructs that may or may not accurately represent the disorders out there, and finally a purely constructivist position that the diagnostic categories are simply constructs with no evidence of psychiatric disorders in the real world. The second question again offers a range of opinion as to how we should define a mental or psychiatric disorder, including the possibility that we should not try to formulate a definition. The general introduction, as well as the introductions and conclusions for the specific questions, are written by James Phillips, and the responses to commentaries are written by Allen Frances.

General Introduction

This article has its own history, which is worth recounting to provide the context of its composition.

As reviewed by Regier and colleagues [1], DSM-5 was in the planning stage since 1999, with a publication date initially planned for 2010 (now rescheduled to 2013). The early work was published as a volume of six white papers, A Research Agenda for DSM-V [2] in 2002. In 2006 David Kupfer was appointed Chairman, and Darrel Regier Vice-Chairman, of the DSM-5 Task Force. Other members of the Task Force were appointed in 2007, and members of the various Work Groups in 2008.

From the beginning of the planning process the architects of DSM-5 recognized a number of problems with DSM-III and DSM-IV that warranted attention in the new manual. These problems are now well known and have received much discussion, but I will quote the summary provided by Regier and colleagues:

Over the past 30 years, there has been a continuous testing of multiple hypotheses that are inherent in the Diagnostic and Statistical Manual of Mental Disorders, from the third edition (DSM-III) to the fourth (DSM-IV)… The expectation of Robins and Guze was that each clinical syndrome described in the Feighner criteria, RDC, and DSM-III would ultimately be validated by its separation from other disorders, common clinical course, genetic aggregation in families, and further differentiation by future laboratory tests–which would now include anatomical and functional imaging, molecular genetics, pathophysiological variations, and neuropsychological testing. To the original validators Kendler added differential response to treatment, which could include both pharmacological and psychotherapeutic interventions… However, as these criteria have been tested in multiple epidemiological, clinical, and genetic studies through slightly revised DSM-III-R and DSM-IV editions, the lack of clear separation of these syndromes became apparent from the high levels of comorbidity that were reported… In addition, treatment response became less specific as selective serotonin reuptake inhibitors were found to be effective for a wide range of anxiety, mood, and eating disorders and atypical antipsychotics received indications for schizophrenia, bipolar disorder, and treatment-resistant major depression. More recently, it was found that a majority of patients with entry diagnoses of major depression in the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study had significant anxiety symptoms, and this subgroup had a more severe clinical course and was less responsive to available treatments… Likewise, we have come to understand that we are unlikely to find single gene underpinnings for most mental disorders, which are more likely to have polygenetic vulnerabilities interacting with epigenetic factors (that switch genes on and off) and environmental exposures to produce disorders. [[2], pp. 645-646]

As the work of the DSM-5 Task Force and Work Groups moved forward, a controversy developed that involved Robert Spitzer and Allen Frances, Chairmen respectively of the DSM-III and DSM-IV Task Forces. The controversy began with Spitzer’s Letter to the Editor, “DSM-V: Open and Transparent,” on July 18, 2008 in Psychiatric Times [3], detailing his unsuccessful effort to obtain minutes of the DSM-5 Task Force meetings. In ensuing months Allen Frances joined him in an exchange with members of the Task Force. In a series of articles and blog postings in Psychiatric Times, Frances (at times with Spitzer) carried out a sustained critique of the DSM-5 work in which he focused both on issues of transparency and issues of process and content [4-16]. The latter involved the Task Force and Work Group efforts to address the problems of DSM-IV with changes that, in Frances’ opinion, were premature and not backed by current scientific evidence. These changes included new diagnoses such as mixed anxiety-depression, an expanded list of addictive disorders, the addition of subthreshold conditions such as Psychosis Risk Syndrome, and overly inclusive criteria sets – all destined, in Frances’ judgment, to expand the population of the mentally ill, with the inevitable consequence of increasing the number of false positive diagnoses and the attendant consequence of exposing individuals unnecessarily to potent psychotropic medications. The changes also included extensive dimensional measures to be used with minimal scientific foundation.

Frances pointed out that the NIMH was embarked on a major effort to upgrade the scientific foundation of psychiatric disorders (described below by Michael First), and that pending the results of that research effort in the coming years, we should for now mostly stick with the existing descriptive, categorical system, in full awareness of all its limitations. In brief, he has argued, we are not ready for the “paradigm shift” hoped for in the 2002 A Research Agenda.

We should note that as the DSM-5 Work Groups were being developed, the Task Force rejected a proposal in 2008 to add a Conceptual Issues Work Group [17] – well before Spitzer and Frances began their online critiques.

In the course of this debate over DSM-5 I proposed to Allen in early 2010 that we use the pages of the Bulletin of the Association for the Advancement of Philosophy and Psychiatry (of which I am Editor) to expand and bring more voices into the discussion. This led to two issues of the Bulletin in 2010 devoted to conceptual issues in DSM-5 [18,19]. (Vol 17, No 1 of the AAPP Bulletin will be referred to as Bulletin 1, and Vol 17, No 2 will be referred to as Bulletin 2. Both are available at http://alien.dowling.edu/~cperring/aapp/bulletin.htm. webcite) Interest in this topic is reflected in the fact that the second Bulletin issue, with commentaries on Frances’ extended response in the first issue, and his responses to the commentaries, reached over 70,000 words.

Also in 2010, as Frances continued his critique through blog postings in Psychiatric Times, John Sadler and I began a series of regular, DSM-5 conceptual issues blogs in the same journal [20-33].

With the success of the Bulletin symposium, we approached the editor of PEHM, James Giordano, about using the pages of PEHM to continue the DSM-5 discussion under a different format, and with the goal of reaching a broader audience. The new format would be a series of “essential questions” for DSM-5, commentaries by a series of individuals (some of them commentators from the Bulletin issues, others making a first appearance in this article), and responses to the commentaries by Frances. Such is the origin of this article. (The general introduction, individual introductions, and conclusion are written by this author (JP), the responses by Allen Frances.

For this exercise we have distilled the wide-ranging discussions from the Bulletin issues into six questions, listed below with the format in which they were presented to commentators. (As explained below, the umpire metaphor in Question 1 is taken from Frances’ discussion in Bulletin 1.)…

Full document in PDF format

 

Review Part Two

(Note: Part Two was published on April 18, 2012 and addresses Questions 3 and 4. The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production. I will replace with the final version when available.)

The six most essential questions in psychiatric diagnosis: A pluralogue part 2: Issues of conservatism and pragmatism in psychiatric diagnosis

Philosophy, Ethics, and Humanities in Medicine 2012, 7:8 doi:10.1186/1747-5341-7-8

http://www.peh-med.com/content/7/1/8/abstract

Published: 18 April 2012

      The six most essential questions Part 2 Provisional

The six most essential questions in psychiatric diagnosis: A pluralogue part 2: Issues of conservatism and pragmatism in psychiatric diagnosis

James Phillips, Allen Frances, Michael A Cerullo, John Chardavoyne, Hannah S Decker, Michael B First, Nassir Ghaemi, Gary Greenberg, Andrew C Hinderliter, Warren A Kinghorn, Steven G LoBello, Elliott B Martin, Aaron L Mishara, Joel Paris, Joseph M Pierre, Ronald W Pies, Harold A Pincus, Douglas Porter, Claire Pouncey, Michael A Schwartz, Thomas Szasz, Jerome C Wakefield, G Scott Waterman, Owen Whooley and Peter Zachar

Abstract (provisional)

In face of the multiple controversies surrounding the DSM process in general and the development of DSM-5 in particular, we have organized a discussion around what we consider six essential questions in further work on the DSM. The six questions involve: 1) the nature of a mental disorder; 2) the definition of mental disorder; 3) the issue of whether, in the current state of psychiatric science, DSM-5 should assume a cautious, conservative posture or an assertive, transformative posture; 4) the role of pragmatic considerations in the construction of DSM-5; 5) the issue of utility of the DSM – whether DSM-III and IV have been designed more for clinicians or researchers, and how this conflict should be dealt with in the new manual; and 6) the possibility and advisability, given all the problems with DSM-III and IV, of designing a different diagnostic system. Part I of this article took up the first two questions. Part II will take up the second two questions. Question 3 deals with the question as to whether DSM-V should assume a conservative or assertive posture in making changes from DSM-IV. That question in turn breaks down into discussion of diagnoses that depend on, and aim toward, empirical, scientific validation, and diagnoses that are more value-laden and less amenable to scientific validation. Question 4 takes up the role of pragmatic consideration in a psychiatric nosology, whether the purely empirical considerations need to be tempered by considerations of practical consequence. As in Part 1 of this article, the general introduction, as well as the introductions and conclusions for the specific questions, are written by James Phillips, and the responses to commentaries are written by Allen Frances.

The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.

 

Symposium on DSM-5: Parts 1 and 2

      Bulletin Vol 17 No 1

Phillips J (ed): Symposium on DSM-5: Part 1. Bulletin of the Association for the
Advancement of Philosophy and Psychiatry 2010, 17(1):1–26

      Bulletin Vol 17 No 2

Phillips J (ed): Symposium on DSM-5: Part 2. Bulletin of the Association for the Advancement of Philosophy and Psychiatry 2010, 17(2):1–75

 

One focus for this site has been the monitoring of the various iterations towards the revision of the Somatoform Disorders categories of DSM-IV, for which radical reorganization of existing DSM categories and criteria is proposed.

As the DSM-5 Development site documentation currently stands (April 27, 2012), the “Somatic Symptom Disorders” Work Group (Chaired by Joel E. Dimsdale, M.D.) proposes to rename Somatoform Disorders to “Somatic Symptom Disorders” and to fold a number of existing somatoform disorders together under a new rubric, which the Work Group proposes to call “Complex Somatic Symptom Disorder.”

Complex Somatic Symptom Disorder (CSSD) would include the previous DSM-IV diagnoses of somatization disorder [DSM IV code 300.81], undifferentiated somatoform disorder [DSM IV code 300.81], hypochondriasis [DSM IV code 300.7], as well as some presentations of pain disorder [DSM IV code 307].

There is a more recently proposed, Simple Somatic Symptom Disorder (SSSD), which requires symptom duration of just one month, as opposed to the six months required to meet the CSSD criteria. There is also an Illness Anxiety Disorder (hypochondriasis without somatic symptoms); and a proposal to rename Conversion Disorder to Functional Neurological Disorder and possibly locate under Dissociative Disorders.

There is some commentary on the Somatoform Disorders in DSM-IV in this discussion from Bulletin 1:

Bulletin Vol 17 No 1, Page 19:

Doing No Harm: The Case Against Conservatism

G. Scott Waterman, M.D. David P. Curley, Ph.D.

Department of Psychiatry, University of Vermont College of Medicine

Filed under Allen Frances, American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

“Bodily Distress Disorders” to replace “Somatoform Disorders” for ICD-11?

February 20, 2012 by

“Bodily Distress Disorders” to replace “Somatoform Disorders” for ICD-11?

Post #145 Shortlink: http://wp.me/pKrrB-1Vx

The information in this report relates only to proposals for the WHO’s forthcoming ICD-11; it does not relate to ICD-10 or to the forthcoming US specific “clinical modification” of ICD-10, known as ICD-10-CM.

Codes assigned to ICD-11 Beta draft categories are subject to change as chapter reorganization progresses. Images and text in this posting may not reflect the most recently assigned codes. This post has been updated to reflect the launch of the Beta drafting platform and revisions to codes assigned during the drafting process as they stand at June 24, 2012.

Part One

 

This report contains an important update on proposals for ICD-11 Chapter 5: Mental and behavioural disorders.

In a February 16, 2012 report by Tom Sullivan for Health Care Finance News, Christopher Chute, MD, who chairs the ICD Revision Steering Group, warned of a possible delay for completion of ICD-11 from 2015 to 2016.

The ICD-11 Beta drafting platform was launched in May 2012.

The Beta drafting platform is a publicly viewable browser similar to the Alpha drafting platform that had been in the public domain since May, 2011.

You can view the Beta Drafting Browser here:

Foundation Component view:

http://apps.who.int/classifications/icd11/browse/f/en

Morbidity Linearization view:

http://apps.who.int/classifications/icd11/browse/l-m/en

The Morbidity Linearization is the view that includes (what may be temporarily assigned) sorting codes. These codes are likely to change as chapter organization progresses. Click on the small grey arrows next to the chapters and categories to display parent > child > grandchildren hierarchies. Click on individual terms to display descriptive content in the right hand frame of the Beta Browser.

Textual content for ICD-11 is in the process of being drafted and the population of content for some chapters is more advanced than others. Content for some of the “ICD-11 Content Model” parameters may display: ID legacy code from ICD-10 (where applicable); Parent(s); Definition; Synonyms; Inclusions; Narrower Terms; Exclusions; Body Site; Causal Mechanism; Signs and Symptoms.

(For ICD-11, entities will be defined across all chapters through up to 13 “Content Model” parameters – considerably more descriptive content than in ICD-10 and a significant workload for the Topic Advisory Group members and managers who are generating the content for ICD-11.)

The Beta Browser User Guide is here:

http://apps.who.int/classifications/icd11/browse/Help/en

This page of the User Guide sets out differences between Foundation view and Morbidity Linearization view.

The various ICD Revision Topic Advisory Groups (TAGs) are carrying out their work on a separate, more complex, multi-author drafting platform. On their platform, editing histories and “Category and Discussion Notes” are recorded so the progress of proposals and reorganization of ICD entities can be tracked, as the draft evolves.

For the Beta drafting platform, interested stakeholders may register for increased access and interaction with the drafting process by submitting comments and suggestions on draft content and proposals.

For those registered for increased access, it is possible to download PDFs of drafts for the “Print Versions for the ICD-11 Beta Morbidity Linearization” for all 25 chapters of ICD-11. These are obtainable, once registered and logged in, from the Linearization > Print Versions tab.

Caveats

I’m going to reiterate the ICD-11 Alpha Browser Caveats because it’s important to understand that the ICD-11 Beta draft is a work in progress – not a static document – and is subject to change.

The draft is updated on a (usually) daily basis; when you view the Beta Browser, you are viewing a “snapshot” of how the publicly viewable draft stood at the end of the previous day; not all chapters are as advanced as others for reorganization or population of content; the draft is incomplete and may contain errors and omissions.

The codes and “sorting labels” assigned to ICD parent classes, child and grandchildren terms are subject to change as reorganization of the chapters progresses. The Beta draft has not yet been approved by the Topic Advisory Groups, Revision Steering Group or WHO and proposals for, and content in the draft may not progress to the Beta drafting stage; field trials have not yet been completed – so be mindful of the fact that the draft is in a state of flux.

As it currently stands, the Beta draft lacks clarity; not all textual content will have been generated and uploaded for terms imported from ICD-10 and there may be no definitions or other textual content displaying for proposed new terms.

Two chapters that are a focus of this site are Chapter 5: Mental and behavioural disorders and Chapter 6: Disorders of the nervous system (the Neurology chapter). (ICD-11 is dropping the use of Roman numerals.)

I won’t be reporting on specific categories in Chapter 6 in this post but will do a follow up post for Chapter 6 in a forthcoming post; again, there is a lack of clarity for Chapter 6 and requests for specific clarifications, last year, from the chair of Topic Advisory Group Neurology and the lead WHO Secretariat for TAG Neurology have met with no response.

Continued on Page 2: Somatoform Disorders in ICD-10; Somatoform Disorders to Bodily Distress Disorders for ICD-11?

Filed under DSM-5 draft proposals, Functional Somatic Syndrome (FSS), ICD-10, ICD-11, ICD-11 Alpha Draft, ICD-11 Beta Draft, ICD-11 consultation, MUS, Somatic Symptom Disorder, Somatoform Disorders, WHO (World Health Organization) Tagged with , , , , , , , ,

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

July 15, 2011 by

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

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

DSM-5 Development

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

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

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), Joel Dimsdale, MUS, Somatic Symptom Disorder, Somatoform Disorders

Minutes: Chronic Fatigue Syndrome Advisory Committee (CFSAC) Spring meeting: May 10 – 11

July 2, 2011 by

Minutes: Chronic Fatigue Syndrome Advisory Committee (CFSAC) Spring meeting: May 10 – 11

Post #95 Shortlink: http://wp.me/pKrrB-1dP

“The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

  • factors affecting access and care for persons with CFS;
  • the science and definition of CFS; and
  • broader public health, clinical, research and educational issues related to CFS.

“Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.”

 

The twentieth meeting of CFSAC Committee was held in Washington, DC, over two days in May.

Minutes for the proceedings on Day One (May 10) are now published on the CFSAC website. I will update this post when Minutes for Day Two (May 11) and the Recommendations resulting out of this meeting are also published.

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

Meeting May 10-11, 2011

Documents

CFSAC website  

Agenda CFSAC Meeting May 10 – 11  

Presentations and Public Testimonies

Videocasts Day One and Two

Meeting background documents

Recommendations [not yet published]

Minutes Day One (May 10)

Minutes Day Two (May 10) [not yet published]

Open in PDF format: CFSAC Minutes 10 May 2011

43 Pages in PDF format

The Twentieth Meeting of THE CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE US DEPARTMENT OF HEALTH AND HUMAN SERVICES

Hubert H. Humphrey Building, Room 712E, 200 Independence Avenue, SW

Washington, DC 20101

Tuesday, May 10, 2011 – 9:00 am to 5:00 pm

Discussion of concerns around the long-standing proposals for the coding of Chronic Fatigue Syndrome in the forthcoming US specific “Clinical Modification” of ICD-10, known as “ICD-10-CM”, had been tabled on the agenda at 1.15pm on Day One of  the meeting. 

ICD-10-CM has been under development for many years. A public comment period ran from December 1997 through February 1998.

In 2001, the CDC were recommending that Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic Fatigue Syndrome should all be classified within Chapter 6 Diseases of the nervous system at G93.3, in line with the international ICD-10, from which ICD-10-CM was being adapted for US use.

By 2007, the proposal was (and still stands) that Postviral fatigue syndrome and Benign myalgic encephalomyelitis would be classified in Chapter 6 at G93.3, but that Chronic Fatigue Syndrome would be retained in the R codes (which will be Chapter 18 in ICD-10-CM) and coded under R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified” > chronic fatigue syndrome NOS, Excludes1: postviral fatigue syndrome (G93.3).

The history of the coding of PVFS, (B)ME and Chronic fatigue syndrome in ICD to 2001 is set out in this CDC document: http://www.co-cure.org/ICD_code.pdf

At the May 10 CFSAC meeting, around 50 minutes was given over to discussion of this agenda item which resulted in a motion proposing a new Recommendation to HHS that was unanimously voted in favour of by the committee.

 

As I have a particular interest in this issue, I have interspersed this section of the Minutes with notes addressing a number of errors and misunderstandings. My comments are inserted in blue, bold.

As these notes are inserted into official Minutes I give no permission to re-publish as both the formatting and the integrity of an official document will be lost – so permission to link to this post only.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM)

Page 27:

LUNCH

The Chronic Fatigue Syndrome Advisory Committee recessed for lunch for one hour.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns

DISCUSSION OF INTERNATIONAL CLASSIFICATION OF DISEASES – CLINICAL MODIFICATION (ICD-CM) CONCERNS

Dr. Christopher Snell

Brought the meeting to order. Noted they would have a discussion of the ICD-related questions and the proposed reclassification of chronic fatigue syndrome.

Chronic fatigue syndrome is not being “reclassified” as such for ICD-10-CM, but being proposed to be retained in the R codes, as a legacy of ICD-9-CM, rather than follow international ICD-10.

Advised there was a page in the members’ notebooks tabbed after the State of the Knowledge summary which noted key steps in the development of the ICD 10 CM, so a clinical modification of the World Health Organization’s (WHO) ICD 10. It would replace ICD 9.

Stated his understanding of the issues:

o Disconnect between the way the U.S. uses the classification and the rest of the world.

o The way CFS is classified under the ICD system has implications for both reporting of incidents, morbidity and mortality.

o Used by outside agencies to categorize the illness for purposes of inclusion or exclusion.

Opened the floor for discussion.

Dr. Wanda Jones

Clarified that the committee requested that the National Center for Health Statistics have someone to talk to them about the international classification of diseases, about the process, about how the U.S. adapts the WHO index, the ICD for use and about opportunities for dialogue.

Noted that a meeting was set a year ago for May 10 and 11 in Baltimore that engaged resources for the CMS, parts of the federal government focused on health IT and the entire ICD team from the National Center for Health Statistics (NCHS). Noted that as a result no one was available for the CFSAC meeting.

In lieu of their attendance, she developed some questions that the NCHS, ICD team responded to.

PDF of Dr Jones’ background document here: ICD-related questions from CFSAC for May 2011 meeting
http://www.hhs.gov/advcomcfs/meetings/presentations/icd_ques201105mtng.pdf

Tried to clarify the questions so they would have a good understanding of the key processes and the key inflection points differentiating the WHO process from the U.S. ICD-CM, the clinical modification process.

Raised additional questions regarding how alignment from prior versions is maintained and how ICD coding is used in decision-making. Noted also the relationship between the coding and the diagnostic and statistical manual (DSM).

Stated that the information was provided by the NCHS and is meant to generate discussion.

Stated that the ICD-CM process is a public process with regularly scheduled public meetings. Noted that there is an opportunity to comment as part of that process and to engage. Confirmed that the NCHS stated that there has been no public presence from the CFS community at the meetings. Noted that this was the process for people interested in CFS coding to become involved.

Confirmed that there was a lock procedure that is soon to be executed for the ICD 10 CM. Noted it had been in development for a decade and the United States’ move to electronic records means it has to temporarily lock the codes. The electronic health records software would not be ready if they keep changing them.

Noted that information about coding changes would continue to be collected, taken under advisement and the NCHS would continue the process of evaluating. Stated that once it is in public use then that lock will release and there would be an opportunity on a periodic basis for updating.

Dr. Leonard Jason

Stated that the committees are developing ICD 10 CM and it intends to retain CFS in R codes (R53.82) and this means that the symptoms, signs, abnormal results of clinical or other investigative procedures are ill-defined conditions.

Stated that R-codes means it’s an ill-defined condition regarding which no diagnosis is classifiable elsewhere. Explained that if it cannot be diagnosed elsewhere in ICD 10 it goes into a R-code.

The intention in ICD 11 is to put CFS with two other conditions (post viral fatigue syndrome and benign myalgic encephalomyalitus [sic]) under a G-code, being G93.3 or diseases of the nervous system.

For ICD-11, the proposal is to classify all three terms within Chapter 6 Diseases of the nervous system but these categories may not retain the familiar “G93.3” code.

For ICD-11, the parent class “G93 Other disorders of brain” is proposed to be removed (this will affect many categories classified under or indexed to a code that is currently a child to the G93 parent class in ICD-10).

For ICD-11, categories within Chapter 6 Diseases of the nervous system are being reorganised and different codes have been assigned to Chapter 6 categories to those used in ICD-10. “Chronic fatigue syndrome” is proposed to be an ICD Title code and is currently assigned the code “06L00” in the ICD-11 Alpha Draft, under new parent class “06L Other disorders of the nervous system”.

For ICD-11, “Benign myalgic encephalomyelitis” is specified as an Inclusion term to “06L00 Chronic fatigue syndrome”. A change of hierarchy is recorded in the iCAT Alpha drafting platform for “Postviral fatigue syndrome” and “Chronic fatigue syndrome”.

See Dx Revision Watch report: ICD-11 Alpha Drafting platform launched 17 May (public version) for screenshots from the latest version of the ICD-11 Alpha Draft: http://wp.me/pKrrB-16N

Noted that coding CFS under the R-code in the proposed ICD 10 CM would place it out of line with the International ICD 10 used in over 100 countries. Discussed the problems and implications of the U.S. coding of CFS as compared with how other countries are coding it. It would exclude it from the R53 malaise and fatigue codes, which would imply that CFS does not have a viral etiology.

That last sentence does not make sense. Retaining CFS under the R codes would exclude it from the Chapter 6, G93.3 classification.

Proposals for ICD-10-CM have “chronic fatigue syndrome NOS (R53.82)” specified as an Exclusion to “G93.3 Postviral fatigue syndrome > Benign myalgic encephalomyelitis”.

Proposals for ICD-10-CM have “Postviral fatigue syndrome (G93.3)” specified as an Exclusion to the “R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified” > Chronic fatigue syndrome NOS codes.

Brought forward a motion to be considered:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD 10 CM under R53.82 chronic fatigue syndrome unspecified, chronic fatigue syndrome NOS (not otherwise specified). CFSAC continues to recommend that CFS should be classified in the ICD 10 CM in Chapter 6 under diseases of the nervous system at G93.3 in line with international ICD 10 in ICD 10 CA which is the Canadian clinical modification and in accordance with the committee’s recommendation which we made in August of 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.

Previous CFSAC recommendations for ICD-10-CM had read:

May 2010 CFSAC recommendation: CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the “Signs and Symptoms” chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).

August 2005 CFSAC recommendation: Recommendation 10: We would encourage the classification of CFS as a “Nervous System Disease,” as worded in the ICD-10 G93.3.

Noted that ME and CFS patients could be potentially vulnerable to the current DSM 5 proposals because those proposals are highly subjective and difficult to quantify. Noted that retaining the CFS in the R-codes in the IDC 10 CM differentiates the U.S. from other countries but it renders CFS and ME patients more vulnerable to some of the DSM 5 proposals, notably chronic complex symptom disorder [sic].

Should be “Complex Somatic Symptom Disorder”, not as above.

Dr. Klimas asked for clarification, and Dr. Jason said that in 2013 they would move from DSM 4 to DSM 5. As it stands they would be collapsing somatization disorder, undifferentiated somatoform disorder, hypochondriasis and some presentations of panic disorder into complex somatic symptom disorder. Dr. Klimas clarified that his concern was that the CFS ICD 9 codes would put the non post viral patients into this somatoform cluster. Dr. Jason indicated that this was so.

Should be “pain disorder” not “panic disorder”.

Dr. Klimas seconded the motion.

Mr. Krafchick agreed and stated that the ramifications of the classification would be disastrous for patients, because it would limit disability payments to two years. Dr. Jones clarified that for now the clock was ticking, however once the codes were released, they could be revised, it’s just the implementation of the electronic system which is causing it to be locked at a particular point in time. While CFSAC has shared concerns with NCHS, there is an official process for engaging with them on their discussions regarding the codes. The US was interested in morbidity, in case claims. It is important that providers know how to best categorize things, and provide guidance on which codes to consider based on the science for the disease being evaluated.

Mr. Krafchick stated that the issue was that the criteria for the codes was etiology/trigger based. Dr. Jones clarified that it would still remain in the clinician’s judgment, however if they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes. Dr. Jones clarified also that the NCHS does not view the R category as a somatoform disorder. Mr. Krafchick and Dr. Snell indicated they understood this but it would still represent vulnerability for patients when classifying.

(The justification given by CDC for not mirroring ICD-10 is this: If the clinician feels there is enough evidence to attribute the patient’s illness to a viral illness, they can code at G93.3; if not, they can code at R53.82 Chronic fatigue syndrome NOS. Testing for a viral illness is not required to assign a code, the coding would be based on the clinician’s judgment.)

Dr. Jason restated his recommendation.

Dr. Marshall stated his concern that there was an attendant risk with this, but that they were between a rock and a hard place. He agreed CFS/ME being classified as a somatoform disorder was inappropriate, but at the same time that the recommendation says it’s a complex multi-system disease, it categorizes it within a single nervous system disease silo. This might affect future research funding opportunities with people saying they don’t fund neurological research. He expressed the view that they should advocate for classification in a multi-system disease category rather than putting it in a nervous system disease category for future, though this category did not exist now. It would be a good thing for patients short term, but it could be a long term risk.

Dr. Snell said that given the amount of current funding, this wasn’t a risk. Dr. Marshall said that using reverse translational research as had been advocated during the meeting might increase the role of this categorization, and could be restrictive in funding.

Dr. Jones asked whether the recommendation being put forward was the same as the May 2010 recommendation, and Dr. Jason said that his was dramatically different. Mr. Krafchick underscored how the insurance companies use these ICD codes. If it was classified in something that could be psychiatric it will be psychiatric, so they can deny coverage.

Dr. Levine asked about co-morbid disorders and how these are weighted. Dr. Jones responded that she did not think that there was a weighting. It would get listed like a death certificate, a cause of death and then a secondary, sometimes a third. She stated it was the judgment of the clinician how it was listed.

Dr. Klimas expressed the view that coding was also problematic because clinicians code to get paid. There already exists a bias against coding CFS as CFS because the codes could not be used for billing. She stated that they would make a conscious decision not to code CFS as CFS. She indicated that neurology was a fine place for it to be categorized, and at least this would assist people who may be looking for patient data, as it wouldn’t be ignored.

Dr. Snell asked for a vote of all those in favor regarding Dr. Jason’s motion. The motion passed unanimously.

Dr. Jones noted that she would share this recommendation with the NCHS but repeated that unless someone moved forward to intervene in the official processes in the public record it may not move forward or have an effect.

Dr. Jones noted that the next ICD meeting is September 14 – 15, 2011 with public comments due July 15. Noted this will be put on the CFSAC website.

A link has been placed on the CFSAC site for the CDC page for information on meetings of the ICD-9-CM Coordination and Maintenance Committee  

She noted she would check the rules to see if a member of the CFSAC or the Chair would be able to give public testimony at another advisory committee meeting. Mr. Krafchick said that if it were possible to send someone as a member of the committee, it would make a great deal of sense and be very important. Dr. Jones said they would figure out how this could happen. Ms. Holderman asked whether this notice, and any future notices where they might want to intervene, could be placed on the CDC website. She stated this cross listing would be useful.

Dr. Jones said that from her experience with the fast evolving HIV coding, there was a dialogue so that coding kept up. She expected there would be some connection, however not as comprehensive or active as that disease.

Dr. Mary Schweitzer, a member of the public, stated that the NCHS did come to CFSAC in 2005 and Dr. Reeves at the time was specific and said that CFS needed to be in R53 due to his own method of diagnosis. She suggested that this showed an obvious connection between the CFS side of CDC and NCHS at the time.

[Discussion of this agenda item ends.]

As these are my notes inserted into an extract from official Minutes, no permission to republish. The Shortlink to this post is http://wp.me/pKrrB-1dP. The PDF of the Minutes for Day One (May 10) is here: CFSAC Minutes 10 May 2011

Related material:

[1] Post: CFS orphaned in the “R” codes in US specific ICD-10-CM: http://wp.me/pKrrB-V4

[2] International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). Note: The 2011 release of ICD-10-CM is now available and replaces the December 2010 release:
http://www.cdc.gov/nchs/icd/icd10cm.htm

[3] Post: US “Clinical Modification” ICD-10-CM. Article clarifying possible confusion between ICD-10, ICD-11 and the forthcoming US Clinical Modification, ICD-10-CM: http://wp.me/pKrrB-Ka

[4] Chronic Fatigue Syndrome Advisory Committee (CFSAC). The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Minutes of meetings, Recommendations and meeting videocasts:
http://www.hhs.gov/advcomcfs/meetings/index.html

Filed under CFSAC meetings, Clinical Modification, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5 draft proposals, Functional Somatic Syndrome (FSS), ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, MUS, Somatic Symptom Disorder, Somatoform Disorders

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

June 16, 2011 by

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

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

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

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

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

APA announcement, today, June 16:

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

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

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

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

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

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

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

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

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

Thanks to all of you who have already submitted. 

Suzy Chapman

Related material:

Final push: DSM-5 draft criteria

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

Call for Action – Second DSM-5 public comment period

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), Joel Dimsdale, MUS, Somatic Symptom Disorder, Somatoform Disorders

ME Association submission to the consultation on the revision of the American Diagnostic and Statistical Manual of Mental Disorders

June 13, 2011 by

ME Association submission to the consultation on the revision of the American Diagnostic and Statistical Manual of Mental Disorders

Post #92 Shortlink: http://wp.me/pKrrB-1bT

http://www.meassociation.org.uk/?p=6619

June 13, 2011

The ME Association has submitted the following comments to the consultation on the proposed, new American Diagnostic and Statistical Manual of Mental Disorders, otherwise known as the “DSM-5″. Our contribution was officially acknowledged on Sunday (June 12) at 10.52am.

The ME Association is a UK based medical charity that provides information and support for people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

The concerns we express below refer to the proposal to create a new and wide-ranging psychiatric category – Complex Somatic Symptom Disorder (CSSD) – in the next edition of the American Diagnostic and Statistical Manual of Mental Disorders (ie DSM V) and the widespread belief that people with ME and CFS may become included in this new medical terminology.

ME is recognised by the World Health Organisation (in section G93:3 of ICD 10) and by the UK Department of Health as a complex neurological disorder – a fact that is now supported by numerous published research studies.

CFS, which includes a wider group of clinical presentations, is indexed to the WHO neurological classification.

It is not therefore appropriate to use the proposed terminology of CSSD – either by intention or mistake – to describe or classify people with ME or CFS as having somatic presentations of mental health disorders in any other system of disease classification or explanation such as the DSM.

This proposal itself has a number of major flaws, including:

• A very limited and partial scientific rationale with too much reliance on subjective judgements.

• An implied acceptance that diagnoses are always correct.

• An assumption that all that is important in psychological medicine is already known and what remains uncertain can be summarised in one new clinical entity.

Psychological Medicine already attracts a lot of negative criticism and this proposal will only make matters worse.

The APA therefore needs to reflect on its full responsibilities when reviewing a subject area as complex and uncertain as this.

We therefore suggest that you drop CSSD and instead refer to ‘chronic distress that may be related to psychological or physical events or a combination’. This is a term that should lead to empathetic, focused management.

ENDS

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, DSM-V, Functional Somatic Syndrome (FSS), MUS, Somatic Symptom Disorder, Somatoform Disorders, WHO (World Health Organization)

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