No agenda, meeting materials or documents have been posted on the ICD-11 Revision Google site but a PowerPoint presentation prepared by WHO’s, Dr Bedirhan Üstün, is viewable here on the “Slideshare” platform.
Dr Bedirhan Üstün is Coordinator, Classifications, Terminology and Standards, Department of Health Statistics and Information, WHO, Geneva.
You won’t need a PowerPoint .pptx format viewer to view this presentation on the Slideshare site, but you will need a .pptx viewer if you want to download and view the file. (A free .pptx viewer can be downloaded for free from the Microsoft site.)
In order to download the file, you will first need to register with Slideshare or use a Facebook membership as Sign in. If you do agree to download through a Facebook membership, please read and digest the T & C before you agree to Slideshare accessing your Facebook profile data.
“WHO is revising the ICD to be completed by 2015. It is going to enter into a Beta phase by 2012 May during which all stakeholders could see and comment on the ICD as well as propose changes, test in practice.”
Slide #7 states:
• 2011 : Alpha version (ICD 11 alpha draft)
– + 1 YR : Commentaries and consultations
• 2012 : Beta version & Field Trials Version
– + 2 YR Field Trials
•2014 : Final version for public viewing
– 2015 : WHA Approval
•2015+ implementation
Slides #11 and #12, set out the thirteen parameters of the ICD-11 “Content Model”.
The “Content Model”
ICD Revision says that the most important difference between ICD-10 and ICD-11 will be the Content Model.
Content in ICD-11 will be populated in accordance with the ICD-11 Content Model Reference Guide. There is the potential for considerably more content to be included for diseases, disorders and syndromes in ICD-11 than appears in ICD-10, across all chapters:
“Population of the Content Model and the subsequent review process will serve as the foundation for the creation of the ICD-11. The Content Model identifies the basic characteristics needed to define any ICD category through use of multiple parameters (e.g. Body Systems, Body Parts, Signs and Symptoms, Diagnostic Findings, Causal Agents, Mechanisms, Temporal Patterns, Severity, Functional Impact, Treatment interventions, Diagnostic Rules).”
In July 2011, this platform was opened up to professionals and other interested stakeholders who can register via the site for fuller access and for reading and submitting comments. See the ICD-11 Alpha Browser User Guide for information on how the Browser functions and how to register for increased access. (This is the Alpha/Beta “hybrid” referred to in the WHO-FIC Council conference call report, February 16, 2011: Page 6: PDF for Report)
ICD-11 Revision and Topic Advisory Groups are continuing to use a separate platform for drafting purposes.
Stakeholder participation at the Beta stage
In preparation for the Beta drafting stage, another publicly viewable platform is being developed. According to ICD Revision presentations, this platform will invite and support a higher level of professional and public interaction with the drafting process, with various levels of input and editing authority for interested stakeholders who register for participation. According to editing status, registered stakeholders would be permitted to:
Make comments Make proposals to change ICD categories Participate in field trials Assist in translating
See presentation slides in Dx Revision Watch Posts #70 and #71:
Slides #15 and #16 of Dr Üstün’s presentation show the methods via which interested stakeholders will be able to register for interaction with the platform.
I will update when more information becomes available on the launch of the Beta platform.
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.
Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.
The Agenda item with the most relevance for this site was the issue of the current proposals for chapter placement and coding for Chronic fatigue syndrome in the forthcoming US specific ICD-10-CM, the proposals presented for consideration at the September meeting of the ICD-9-CM Coordination and Maintenance Committee on behalf of the Coalition for ME/CFS, and an alternative proposal presented by NCHS.
See this Dx Revision Watch post (Post #118, December 27, 2011) for a report on the Fall 2012 Meeting presentation by Donna Pickett (NCHS) and discussions of proposals for ICD-10-CM:
International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)
Recommendations out of the Fall 2011 CFSAC Meeting
The specific recommendations articulated by the Committee are:
1. This recommendation addresses the process by which CFSAC transmits recommendations to the Secretary and the Secretary communicates back to CFSAC whether or not a recommendation was acted upon. CFSAC recommends that this process be transparent and clearly articulated to include regular feedback on the status of the committee’s recommendations. This communication could originate directly from the Office of the Secretary or be transmitted via the relevant agency or agencies.
2. CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
3. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort.
4. This multi‐part recommendation pertains to classification of CFS in ICD classification systems:
a) CFSAC considers CFS to be a multi‐system disease and rejects any proposal to classify CFS as a psychiatric condition in the U.S. disease classification systems.
b) CFSAC rejects the current classification of CFS in Chapter 18 of ICD‐9‐CM under R53.82, chronic fatigue unspecified, chronic fatigue syndrome, not otherwise specified.
c) CFSAC continues to recommend that CFS should be classified in ICD‐10‐CM in Chapter 6 under Diseases of the Nervous System at G93.3 in line with ICD‐10, the World Health Organization, and ICD‐10‐CA, the Canadian Clinical Modification and in accordance with CFSAC’s recommendations of August 2005 and May 2011. CFSAC rejects CDC’s National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as myalgic encephalomyelitis because CFS includes both viral and non‐viral triggers.
d) CFSAC recommends that an “excludes one” [sic *] be added to G93.3 for chronic fatigue, R53.82, and neurasthenia, F48.8. CFSAC recommends that these changes be made in ICD‐10‐CM prior to its rollout in 2013.
This final recommendation was also provided to the National Center for Statistics at the CDC prior to the November 18, 2011 deadline for comments along with the following rationale:
We feel that the interests of patients, the scientific and medical communities, continuity and logic are best served by keeping CFS, (B)ME (Benign Myalgic Encephalomyelitis) and PVFS (Post Viral Fatigue Syndrome) in the same broad grouping category. Current scientific evidence would indicate there are more similarities between the three entities than there are differences. Whether they are synonyms for the same underlying concept, disease entities and sub‐entities, or merely the best coding guess is unclear. In reality, any or all of the above may be correct. While the relationship between CFS, B(ME) and PVFS is not stated, that they are grouped together in ICD 10 (WHO) would indicate some rationale for a connection. Our understanding is that this association will be maintained in the ICD 11, which may also include further description of the relationship. Exclusions specific to chronic fatigue (a symptom present in many illnesses) and neurasthenia (not a current diagnosis) also seem to be under consideration for ICD 11.
*Ed: Should be “Excludes1”. For definitions for “Excludes1” and “Excludes2” see Post #118
The Minute for Ms Pickett’s presentation “International Classification of Diseases—Clinical Modification (ICD‐CM) Donna Pickett, National Center for Health Statistics (NCHS/Centers for Disease Control and Prevention)” and Committee discussions in response to that presentation can be found on Pages 4-10 of the PDF for Minutes Day One (November 8, 2011).
Video of presentation in Post #118. Ms Pickett’s presentation slides here in PDF format.
The Minute for the proposal and unanimous approval of a revised and expanded Recommendation to HHS on the coding of CFS in ICD-10-CM can be found on Pages 43-44 of the PDF for Minutes Day Two (November 9, 2011). Video in Post #118.
As reported in Post #118, following the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee, NCHS had invited comments from stakeholders on the proposals in Option 1 (presented by the Coalition for ME/CFS) and Option 2 (alternative proposals by NCHS).
The closing date for comments was November 18, 2011.
A decision was expected before the end of December but since any decision that might have been reached on these proposals has yet to be announced, I have raised some queries with Ms Pickett around the decision making process (see Post #118). I will update when a response has been received from Ms Pickett’s office or a public announcement made.
International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS), November 27, 2011
CFSAC November 2011 meeting: videos, presentations and Day One Agenda item:
International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)
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).
The two day fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on Tuesday, November 8 and Wednesday, November 9, 2011 at a new venue – the Holiday Inn Capitol, Columbia Room, 550 C Street, SW, Washington, DC.
No live video streaming
In May 2009, a precedent was set for the entire proceedings of CFSAC meetings to be streamed as real-time video with videocasts and auto subtitling posted online a few days after the meetings have closed.
Prior to the November meeting, CFSAC Committee Support Team had clarified that the commitment to providing real-time video streaming could not be met (later said to be due to budgetary constraints) and that a phone link would be provided instead – an option not available to those of us outside the US – and that a high quality video of the two day proceedings would be posted within a week. In the event, videos for Day One and Day Two of the meeting were not posted within this timeframe.
International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)
The Agenda items that have the most relevance for Dx Revision Watch site are the presentation on Day One by Donna Pickett (NCHS) and the Committee’s formulation on Day Two of a revised CFSAC Recommendation to HHS on the coding of CFS in the forthcoming ICD-10-CM.
The video for that section of the meeting wasn’t published on YouTube until November 17, just one day prior to the closing date for submission of comments on the proposals for the coding of CFS in ICD-10-CM put forward by the Coalition4ME/CFS for NCHS consideration and an alternative option presented by NCHS at the September 14, 2011 meeting of the ICD-9-CM Coordination and Maintenance Committee [1].
This meant that many of those compiling comment for submission before the November 18 deadline who had not attended the CFSAC meeting in person were unable to use Ms Pickett’s presentation to inform their submissions as they were not aware that the videos for Day One had been published or would have already submitted their comments.
Ms Pickett’s presentation slides can be viewed here in PDF format:PowerPoint Slides
The video of Ms Pickett’s presentation can be viewed below or on YouTube:
Uploaded by WomensHealthgov on 17 Nov 2011 Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, November 8, 2011. 9am to 11:15am. Opening Remarks, International Classification of Diseases-Clinical Modification (ICD-CM), and Public
During her presentation, Ms Pickett had outlined the two proposals under consideration (Option 1 and Option 2) but the slide for the NCHS’s suggestion (Option 2) omits the suggested Excludes.
Note also that the presentation slides did not set out that NCHS has suggested the inclusion term “Chronic fatigue syndrome NOS” under a suggested subcode, “G93.32 Chronic fatigue syndrome”.
I consider Option 2 (NCHS) to be problematic for a number of reasons and I was unable to support the NCHS’s suggestion. I could not support:
• the suggested revision of the existing ICD Title term “G93.3 Postviral fatigue syndrome” to “G93.3 Postviral and other chronic fatigue syndromes”;
• the inclusion of term “Chronic fatigue syndrome NOS” included under “G93.32 Chronic fatigue syndrome”;
• the specification of class 2 exclusions, that is, “Excludes2” rather than “Excludes1”.
If consideration were being given to the creation of separate subcodes or child categories to a revised parent G93.3 class, then I would prefer to see three discrete subcodes under G93.3, one for each term, in the order: G93.31 Postviral fatigue syndrome; G93.32 Myalgic encephalomyelitis (Benign);G93.33 Chronic fatigue syndrome under an alternative term to the suggested parent term, “G93.3 Postviral and other chronic fatigue syndromes”.
Given that I consider NCHS Option 2 to be problematic and given that no alternatives appear to be currently under consideration by NCHS, I submitted a comment supporting Option 1 (Coalition4ME/CFS), with two caveats:
a) That any excludes specified are Excludes1 not Excludes2
b) That consideration is given by NCHS to specifying two exclusion terms beneath G93.3
I have reviewed the September ICD-9-CM Coordination and Maintenance Committee meeting audio [5] and do not consider there had been adequate discussion at the meeting of the implications for the inclusion of a “Chronic fatigue syndrome NOS (Not Otherwise Specified)” coded to a suggested subcode “G93.32 Chronic fatigue syndrome”.
The implications for this suggestion do not appear to have been discussed publicly at the November CFSAC meeting nor were the potential implications for the use of “Excludes2” class excludes raised during public discussion.
New CFSAC November 2011 Meeting Recommendation
The Minutes for the November CFSAC meeting and the approved Recommendations formulated at that meeting are not yet published on the CFSAC site. [Update @ March 27, 2012: Minutes are available here ]
At the May 2011 meeting, following discussion of the ICD-10-CM CFS coding issue and concerns for the current proposals of the DSM-5 Somatic Symptom Disorders work group, the following Recommendation had been proposed by Dr Lenny Jason and voted unanimously in favour of by CFSAC committee:
CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS.
CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005.
CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)
Following committee discussions at the November meeting, this May 2011 Recommendation was reviewed and expanded on to reflect the developments at the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee and CFSAC committee’s views on the two Options that have been proposed and are under consideration.
CFSAC committee member and disability attorney, Steven Krafchick, read out a motion for a new Recommendation which was proposed and voted unanimously in favour of:
The CFSAC November 2011 Recommendation:
CFSAC considers CFS to be a multi-system disease and rejects any proposal to classify CFS as a psychiatric condition in the US disease classification systems.
CFSAC rejects the current classification of CFS in Chapter 18 of ICD-10-CM under R53.82 – chronic fatigue, unspecified > chronic fatigue syndrome Not Otherwise Specified.
CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “Diseases of the nervous system” at G93.3, in line with ICD-10 (the World Health Organization) and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005 and May 2011.
CFSAC rejects the National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as [benign] myalgic encephalomyelitis because CFS includes both viral and non-viral triggers.
CFSAC recommends that an “Excludes1” be added to G93.3 for chronic fatigue – R53.82 and neurasthenia – F48.0.* CFSAC recommends that these changes be made in ICD-10-CM prior to its roll out in 2013.
*Ed: Note: CFSAC committee has been advised that the discrete code for Neurasthenia in ICD-10-CM Chapter 5 is F48.8 not F48.0, as had been read out at the meeting. I am informed that the new Recommendation is being amended.
Watch a video clip for the Recommendation, here:
Uploaded by coalition4mecfs on 17 Nov 2011 CFSAC Committee Recommendation on the ICD-10 -11/9/2011
Watch discussion of Recommendation and vote here:[1 hr 12 mins from start]
Uploaded by WomensHealthgov on 18 Nov 2011 Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 2, November 9, 2011. 1:30pm to 4:30pm. Public Comment and Committee Discussion to Finalize Recommendations
Request for clarification
During her presentation to CFSAC, in response to a query from the floor, Ms Pickett had clarified that the comments being received by NCHS were not being reviewed until after the closing date for submissions (November 18) and that a decision about the proposals would be made in December. At the time of publication, no decision has been made public and it is not known whether any decision has been arrived at.
On December 18, I emailed Ms Pickett and asked if she could advise me by what date a decision is expected to have been made following review and consideration of the comments on proposals for the coding and chapter placement of Chronic fatigue syndrome for ICD-10-CM that were received by her office between September 14 and November 18.
On the CDC website it states that:
“The ICD-9-CM Coordination and Maintenance Committee’s role is advisory. All final decisions are made by the Director of NCHS and the Administrator of CMS. Final decisions are made at the end of the year and become effective October 1 of the following year.”
I also asked Ms Pickett if she would clarify if this meant that any decision arrived at by the Coordination and Maintenance Committee is advisory only and whether a final decision would be made by the Director of NCHS and Administrator of CMS; if this is the case, by what date would their decision expect to be made and by what means would a decision be made public.
I will update when I have a response from Ms Pickett and/or when any decision has been reached and announced.
See this CFSAC page for list of Public Testimony and PDFs of testimonies for
Day One: Tuesday, November 8, 2011 Day Two: Wednesday, November 9, 2011
See this CFSAC page for PDFs of Written Testimony Received Prior to the Meeting Date.
Marly Silverman’s Public Testimony on behalf of the Coalition4ME/CFS on the issue of the proposed coding of CFS in the forthcoming US specific ICD-10-CM:
The Coalition4ME/CFS had submitted a proposal to NCHS, prior to the September meeting, requesting that Chronic fatigue syndrome be deleted as an inclusion term under code R53.82 Other malaise and fatigue (Chapter 18 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified) and that the term be added as an inclusion term under code G93.3 Postviral fatigue syndrome (Chapter 6 Disorders of the nervous system).
The Coalition 4 ME/CFS had also requested that their proposal be considered for October 1, 2012 so that the change occurs prior to the October 1, 2013 implementation date of ICD-10-CM even though the condition is not a new disease.
Ed: Note: Option 1 (Proposal by the Coalition4ME/CFS) does not display the term Benign myalgic encephalomyelitis under G93.3 Postviral fatigue syndrome. This is because no change to the placement of this term was being requested by the Coalition4ME/CFS, that is, there was no proposal to Add, Delete or Revise the term Benign myalgic encephalomyelitis other than a request that consideration be given to placing the ICD-10 descriptor “Benign” at the end of the term, as “Myalgic encephalomyelitis (Benign)”.
Ed: Note: At the September 14, 2011 ICD-9-CM Coordination and Maintenance Committee meeting, there had been some brief discussion of whether class 1 excludes (Excludes1) were more appropriate than class 2 excludes (Excludes2). Clarification of the difference between the terms follows:
The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.
Excludes1
A type 1 Excludes note is a pure excludes. It means “NOT CODED HERE!” An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is for used for when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.
Excludes2
A type 2 excludes note represents “Not included here”. An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together.
[Note this audio downloads as a large Zipped file. The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]
On November 17, the American Counseling Association, which represents 20% of all mental health professionals, published a letter to the American Psychiatric Association, calling for external review of DSM-5. For a PDF and text copies of the ACA’s letter see this Dx Revision Watch post:
American Psychiatric Association
1000 Wilson Boulevard Suite 1825
Arlington, VA 22209
Telephone 703.907.7300 Fax 703.907.1085
Email apa@psych.org Internet www.psych.org
November 21, 2011
Don W. Locke, Ed.D.
President
American Counseling Association 5999 Stevenson Avenue
Alexandria, VA 22304
Dear Dr. Locke:
Thank you for outlining the American Counseling Association’s (ACA) concerns with proposed revisions for the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5). We value the role of professional counselors in the delivery of mental health care, and we welcome the comments of mental health care providers on DSM. We share the goal of producing a DSM that is useful to all health professionals, researchers and patients so that the American Psychiatric Association (APA) can continue to play its longstanding role in advancing the understanding, diagnosis and treatment of mental disorders.
A great deal of misinformation about DSM-5 has been circulating on the internet, so APA appreciates your direct inquiry and the opportunity to dispel myths generated from these sources. We address each of your concerns below.
Empirical Evidence and Independent Review. It is useful to review the most recent draft version of DSM-5 to truly understand the breadth of evidence collection and review that has taken place during its development. This process actually began in 1999 when APA and the National Institute of Mental Health (NIMH) sponsored a conference to begin creating a research agenda for the next DSM. Additional conferences sponsored by APA, NIMH, the World Health Organization (WHO) and the World Psychiatric Association took place in 2000, all of which resulted in the 2002 publication of A Research Agenda for DSM-V. Additional groups were commissioned in 2003 to further examine infant and young child, late-life and gender issues resulting in the 2007 publication of Age and Gender Considerations in Psychiatric Diagnosis: A Research Agenda for DSM-5.
APA, WHO, NIMH, and two other NIH agencies—the National Institute on Drug Abuse (NIDA) and National Institute on Alcohol Abuse and Alcoholism (NIAAA) —held 13 conferences between 2004 and 2008, involving nearly 400 participants representing 39 countries. Over half of the participants were non-U.S. residents. The work resulted in the creation of 10 monographs and hundreds of published journal articles regarding the current state of knowledge, gaps in research, and recommendations for additional research in many fields.
After the DSM-5 Task Force was formed in 2007, and based on the work described above, APA established 13 work groups, each with 8-15 members who are leading clinicians and researchers in the field, to address various areas for review. Since then, the 160 members of the DSM-5’s 13 work groups have sought to review nearly two decades of research published since the introduction of DSM-IV. Work group members selected specific diagnoses on which to focus their individual reviews of the literature in support of or against each specific topic. APA granted work group members permission to publish all of their literature reviews and nearly all have been accepted for publication in peer-reviewed scientific journals. The 2009 guidelines you referenced were developed to ensure the standardization of presentations by all work group members as they prepared draft diagnostic criteria and rationales for Task Force review. These guidelines were subsequently adopted to facilitate reviews by the Scientific Review Committee (SRC).
ACA’s call for an “independent, third party review” of the DSM process and evidence has already been answered in the establishment of these work groups and the close coordination APA has with other national and international scientific groups. The members of the work groups are not APA employees, they are not paid by APA and are not under contract with APA. Their participation is strictly voluntary, based upon their interest in advancing the field of psychiatry and better serving patients. They are free to leave the work group if at any time they are not satisfied that the process is unbiased or believe that the results are lacking in empirical evidence. Attachment A lists the institutions from which work group members are drawn. As you can see, they represent academic and mental health institutions throughout the world. No more than two members of any one institution are represented on any one work group in order to achieve diversity of opinion. It should be noted that although many of these participants are affiliated with universities, the vast majority of them also engage in clinical practice.
The work group members include multiple types of mental health practitioners. Approximately one third of the work group members hold PhDs and 30 percent are international professionals. Ninety-seven members of the work groups are psychiatrists, 47 members are psychologists, 2 are pediatric neurologists, 3 are statisticians/epidemiologists and there is one representative each from pediatrics, social work, psychiatric nursing, speech and hearing specialists, and consumer groups. In addition, there are more than 300 outside advisors — each selected because of a specific and well-recognized expertise in a particular field. These individuals represent an independent group of volunteer medical and mental health professionals who are also leaders in their respective fields and who have every conceivable incentive to ensure that the work they produce is soundly based in science and supported by empirical evidence.
Every proposed change in DSM-5 is guided by a review of scientific literature, analyses of relevant data sets and full discussion by the work group members. In an unprecedented move, the APA has opened the DSM-5 development process to the public to further ensure that the widest range of opinion and information could be sought and all clinical and “real world” implications of the diagnostic criteria could be considered. The drafts that APA has put out for review by the public are posted to elicit comments from others in the field and from patients and family members who may be impacted by changes. APA has received through its website alone more than 10,000 comments—each of which has been considered and evaluated by the work groups.
Dimensional and Cross-Cutting Assessments. These assessments were introduced in order to diagnose psychiatric disorders in a more detailed way and to recognize the frequent co-morbidities in persons who suffer from mental illness. Level 1 crosscutting assessments are based on the model of the brief two-question screener for depression, adopted by the U.S. Task Force for Preventive Services, to assess the presence of significant symptoms in 12 different psychological domains—a total of 23 questions that permit a rapid review of mental systems. If positive symptoms are present, level 2 cross-cutting measures are modeled on the NIH-developed Patient Reported Outcome Measurement Information System (PROMIS) that has been extensively tested. Where PROMIS measures were not available, we used the most widely tested comparable measures to cover other domains such as the NIDA developed ASSIST scale.
Severity measures for individual diagnoses include well-documented and publicly available measures such as the PHQ-9 for Major Depression, PHQ-8 for somatic symptoms, the Swanson SNAP scale for Attention, the Stringaris scale from NIMH for irritability, the Altman scale for bipolar disorder, and others that were developed specifically by the DSM-5 work group experts that are built on past instruments and are being tested in the field trials.
All of these scales are being subjected in field trials to test-retest reliability assessments, patient evaluations of their utility, and clinician assessments of their feasibility and utility in identifying symptomatic areas such as substance abuse or suicidal risk, which might otherwise be overlooked. External validators will include correlates with diagnoses as well as other measures of impairment and disability. Regarding the cross-cutting disability measure, the WHO Disability Assessment Scale (WHO-DAS) is one of the most widely tested disability measures in the world—developed by NIH and WHO with over a decade of testing.
Field Trials/Validity of Diagnoses. With regard to the critique of our field trials, we were pleased to see that you referenced Dr. Helena Kraemer, who serves on the DSM-5 Task Force. Dr. Kraemer helped design the field trials and authored the referenced paper as part of the DSM-5 conference series on the integration of dimensional and categorical diagnosis. As Dr. Kraemer notes in the referenced paper, a field trial is not the forum in which validity can be fully assessed, and as in every field of medicine, diagnostic criteria reflect the best scientific understanding at the time, but they continue to develop and evolve as more scientific research comes to light.
Definition of Mental Disorder. The definition of mental disorder that is used in DSM-IV is undergoing a thorough review by the DSM-5 Task Force. There have been two revised definitions proposed: one, as you mention, by Stein et al. published in Psychological Medicine, the other proposed by the DSM-5’s Study Group on Impairment and Disability Assessment. Neither definition has been accepted by the Task Force at this time. There is no intent on the part of the Task Force to overstate the psychobiological advances in mental disorders; all other paradigms are being considered as well. Through the review process, APA assimilated input from around the world and across disciplines and is reformulating its recommendations for the definition of a mental disorder. Many other proposals have been revised after consideration of public comments as well. We continue to work towards a definition of mental disorder that is evidence-based and acceptable to the mental health community at large. We will look forward to your comments on the revised definition when it is posted in the third round of revisions expected to come out in the spring—when we plan to open another public comment period on our website.
Transparency. The APA asked those involved in the DSM-5 process to sign a member acceptance form. The form contains a confidentiality provision that has been the subject of much misunderstanding and which APA has addressed in detail in the past. This form is not intended to restrict the free discussion of ideas on the issues involved in revising DSM and developing new diagnostic criteria. In fact, DSM-5 Task Force and work group members have presented and participated in open discussions at hundreds of psychiatric and other major medical meetings around the world. Work group members have requested and received permission whenever requested to publish on the proposed changes in DSM-5 without regard to their point of view. (A list of those meetings and publications is available for review on the DSM-5 website.)
Indeed, we encourage members to have open discussions with knowledgeable colleagues just as APA has encouraged comments from those interested in mental health on its website. It is only through broad and diverse opinions that we can, as scientists and clinicians, come to a consensus on how to interpret the data that are available. Further, by widely discussing these issues, APA hopes to stimulate funding for further research into areas that are not sufficiently developed to date to be included in the main body of DSM. Thus, our publication and review process has been beneficial in defining various mental disorders and also in defining and developing interest in additional areas in the field of mental health that require further study.
The confidentiality portion of the member acceptance form is not intended to promote secrecy. Instead, APA sought confidentiality to facilitate the verbal process of deliberation. Most, if not all scientific institutions of which APA is aware, including NIH, the Institute of Medicine, WHO, and all scientific journal preparations and reviews share results of research and explanations for their conclusions, but do not fully open the deliberative process itself for comment. This is crucial in order to ensure the free-exchange of ideas. While the work groups are following this established model in our own deliberations, we also made an important decision to make our proposed revisions to the diagnostic criteria, while still in draft form, available for public review both nationally and internationally.
The Scientific Review Committee. The SRC was appointed by the Board of Trustees of APA which is charged with the ultimate approval of the final DSM-5 recommendations. The SRC’s charge is to evaluate the strength of the evidence in support of proposed revisions, based on a specific template of validators. This separate peer-review process will provide important guidance to the Board. While the ongoing feedback from the SRC to work groups on specific disorders will not be made available during the DSM-5 development process (as is the case for the deliberations of NIH study sections), summaries of the committee’s final decisions will be incorporated into DSM-5 “source books.” The SRC’s contributions will be reflected in the final criteria of DSM-5. Another committee, the Clinical and Public Health (CPH) Committee, has recently been appointed by the Board to consider clinical utility and public health issues that are not being reviewed by the SRC.
In addition, the APA has worked with the World Health Organization on an ongoing basis to develop harmonization between disorders included in both DSM-5 and ICD-II . Public comment has twice been solicited on proposed diagnostic criteria, and a third public comment period is planned for 2012. Work group members review each comment submitted through the DSM-5 website and consider revisions to criteria based on this input from other health professionals, consumer advocates, patients and families, and other members of the public.
The APA believes that the extensive process of development for DSM-5 will result in a scientifically and clinically useful new edition of the diagnostic manual, and we are indebted to the hundreds of experts who have contributed to its content. We are grateful, as well, for the valuable input from concerned individuals and organizations, and we appreciate the opportunity to respond to the concerns of the American Counseling Association.
Sincerely,
John Oldham, MD President
Attachment
Attachment A: DSM-5 Task Force and Work Group Member Affiliations
2 APA
1 Boston College
1 Brown University 1 Cardiff University
1 Case Western Reserve University
1 The Chinese University of Hong Kong
9 Columbia University
1 Dartmouth Medical School
3 Duke University
1 Emory University
1 Federal University of Rio Grande do Sul
1 Florida State University
1 Free University Medical Center, Amsterdam
1 Hamburg University 9 Harvard University
1 Heinrich Heine University
3 Johns Hopkins University
1 Karolinska Institute
4 King’s College London
1 Maastricht University
2 Mayo Clinic College of Medicine
1 McGill University 1 MDDA-RI
1 The Menninger Clinic
1 Mt Sinai School of Medicine
1 George Washington University/Howard University
1 NICHD
5 NIMH
1 NIAAA
1 NIDA
1 New York Medical College
2 New York University
1 Oregon Health Sciences University
1 Robert Wood Johnson Medical School
1 Rutgers University
4 Stanford University
1 Texas A&M University
1 Tulane University
1 Uniformed Services University
1 Universidad Autonoma Metropolitana-Xochimilco
1 University College London
1 University Hospital of Freiburg
1 University Medical Center Groningen
1 University of Alabama, Birmingham
1 University of Bordeaux 1 University of Dresden
1 University of Amsterdam
2 University of Arizona/Sunbelt Collaborative
1 University of Arkansas for Medical Sciences
2 University of British Columbia
4 University of California, Los Angeles
1 University of California, Berkeley
1 University of California, Davis
5 University of California, San Diego
1 University of Cape Town
1 University of Cincinnati
2 University of Colorado
1 University of Connecticut
1 University of Florida
2 University of Illinois at Chicago
3 University of Iowa
1 University of Laval
1 University of Manchester 1 University of Maryland
1 University of Michigan 1 University of Minnesota
1 University of Naples
2 University of New Mexico 1 University of New Orleans
3 University of New South Wales
1 University of North Carolina
2 University of North Dakota
1 University of Notre Dame
1 University of Oxford
3 University of Pennsylvania
5 University of Pittsburgh
2 University of Puerto Rico
2 University of Rochester 1 University of San Diego 1 University of South Carolina
1 University of Southampton
3 University of Toronto
2 University of Washington 1 Vanderbilt University
1 Viersprong Institute
1 Virginia Commonwealth University
4 Washington University
1 Weill Cornell Medical College
1 Wesleyan University
2 Yale School of Medicine
On July 15, the Coalition 4 ME/CFS submitted a written proposal to the ICD-9-CM Coordination and Maintenance Committee to restore CFS to Chapter 6 “Diseases of the Nervous System” code G93.3 in the ICD-10 Clinical Modification (ICD-10-CM) in the US.
This action follows the September 2004, August 2005 and May 2011 recommendations of the federally-appointed Chronic Fatigue Syndrome Advisory Committee (CFSAC). In each case, the committee recommended that CFS be in the neurological classification in the ICD-10-CM, in line with the rest of the world.
On September 14, the Coalition 4 ME/CFS made an oral presentation to the committee and responded to concerns expressed by audience members.
The coalition has written a letter to clinicians, researchers and other medical professionals outlining the National Center for Health Statistics (NCHS) and the coalition option for modification
We have also included a sample letter for medical professionals and the public to give input rejecting NCHS’s option #2 in favor of the coalition’s proposal option
We are asking medical professionals to comment on this important issue before the comment period ends on November 18.
Medical professionals wanting to add their signature to the coalition’s prepared letter to NCHS that will be submitted prior to the November 18 deadline can contact Mike Munoz at info@coalition4MECFS.org
More information concerning the coalition and the ICD initiative can be found at
Comments on proposals need to be submitted by November 18.
Comments from stakeholders, preferably via email, should be submitted to:
Donna Pickett RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics – CDC
3311Toledo Road Hyattsville, MD 20782
Via email: nchsicd9CM@cdc.gov
You can download an Audio of the September 14 NCHS meeting here:
[Note this is a large Zipped file. The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]
The information in this report refers only to the existing international WHO ICD-10 and not to the forthcoming ICD-11 or to any country specific, clinical modification of ICD-10.
New: Online ICD-10 Version for 2010
I reported some months ago that according to documentation from WHO-FIC meeting materials, it was understood that a version of ICD-10 for 2010 was planned to be published online by WHO, Geneva, earlier this year.
This would replace the ICD-10 online version for 2007 and incorporate all the annual updates to ICD-10 from 2007 to 2010.
This is now up online.
A searchable version of ICD-10 for 2010 is available at this URL:
International Statistical Classification of Diseases and Related Health Problems 10th Revision
It is presented on a platform similar to the platform being used for the ICD-11 Alpha Draft, that is, a list of ICD-10 Chapters on the left side of the screen, arranged with hierarchical parent > child categories, with the category codings set out on the right side of the screen.
This is the URL for ICD Title term G93.3 Postviral fatigue syndrome:
If “Chronic fatigue syndrome” is entered into the Search box, a drop down reads:
“Syndrome – fatigue – chronic – G93.3”
(Which is the way it is set out in Volume 3 The Alphabetical Index.)
Mouse hover over the orange square on the left of the dark blue drop down and the “Alt text” reads:
“Found in Index”
There is a User Guide for ICD-10 Version: 2010 but the platform is not difficult to navigate, just select a chapter and click on the little grey arrows to display parent class and Title term categories and their child categories – you can’t break anything:
Those of us with websites that have URLs pointing to specific ICD-10 version for 2007 categories will need to adjust URLs for the new platform, as code specific URLs are pointing only to the ICD-10 Version: 2010 opening page, for example:
what displayed in ICD-10 version for 2007 at this path:
dx revision watch 