Is DSM 5 A Public Trust Or An APA Cash Cow? Commercialism And Censorship Trump Concern For Quality by Allen Frances

Is DSM 5 A Public Trust Or An APA Cash Cow? Commercialism And Censorship Trump Concern For Quality

APA forces domain name change for DSM-5 and ICD-11 Watch site

Post #122 Shortlink: http://wp.me/pKrrB-1Ah

3 January, 2012

On December 22, with just one working day left before offices closed down for the Christmas and New Year holidays, I received two communications from the Licensing and Permissions department of American Psychiatric Publishing, A Division of American Psychiatric Association, informing me that the unauthorized use of the DSM 5 mark in my domain name is improper and in violation of United States Trademark Law.

I was advised that my actions may subject me to contributory infringement liability including increased damages for wilful infringement. I was requested to immediately cease and desist any and all use of the DSM 5 mark, remove the DSM 5 mark from my domain name and provide documentation confirming I had done so, and that any further use would be considered an infringement.

Given the difficulties of liaising from the UK with American Psychiatric Publishing and with my Californian based site hosts, WordPress, over the holiday and mindful of the implied consequences should I delay taking action, I considered I had little option but to change the site’s domain and title.

Since December 23, this site has been operating under the title Dx Revision Watch and the site’s domain name has been changed to

https://dxrevisionwatch.wordpress.com/

As a result of changing the domain name, links on websites, forums and social media platforms for posts published prior to December 23 and for pages cached on Google and other search engines before that date will no longer point to this site and will return a “site deleted” or 404 message.

If you have bookmarked or are linking to this site please update your links.

Today, on Psychology Today, Allen Frances, MD, who had chaired the DSM-IV Task Force, has blogged on the actions American Psychiatric Publishing has taken against this site:

DSM5 in Distress
The DSM’s impact on mental health practice and research.
by Allen Frances, M.D

Is DSM 5 A Public Trust Or An APA Cash Cow?
Commercialism And Censorship Trump Concern For Quality

Allen Frances, M.D. |  January 03, 2012

http://www.psychologytoday.com/blog/dsm5-in-distress/201201/is-dsm-5-public-trust-or-apa-cash-cow

Published on January 3, 2012 by Allen J. Frances, M.D. in DSM5 in Distress

DSM 5 will have a big impact on how millions of lives are led and how scarce mental health resources are spent. Getting the right diagnosis and treatment can be life enhancing, even life saving. Incorrect diagnosis can lead to the prescription of unnecessary and potentially harmful medication and to the diversion of services away from those who really need them and toward those who are better left alone. Preparing DSM 5 should be a public trust of the highest order.

But DSM 5 is also an enormously profitable commercial venture. DSMs are perpetual best sellers (at least one hundred thousand copies sold every year) netting the American Psychiatric Association yearly profits exceeding five million dollars.

From the very start of work on DSM 5, APA took unprecedented steps to protect its commercial interest – but in the process betrayed its obligation to the public trust. Work group members were recruited only on condition that they first sign confidentiality agreements – thereby squelching the free flow of ideas that is absolutely necessary to produce a quality diagnostic manual. ‘Intellectual property’ has been the priority – a safe, scientifically sound DSM 5 has been the victim.

DSM 5 commercialism and heavy handed censorship have recently assumed a new and troubling form. APA is exercising its ‘DSM 5’ trademark to unfairly stifle an extremely valuable source of information. Suzy Chapman, a patient advocate from England, runs a highly respected and authoritative site providing the best available information on the preparation of both DSM and ICD. Her writings can always be relied upon for fairness, accuracy, timeliness, and clarity. The site has gained a grateful following with over 40,000 views in its first two years.

Ms Chapman recently sent me the following email describing her David vs Goliath struggle with the APA and its disturbing implications both for DSM 5 and for internet freedom:

“Until last week, my website published under the domain name http://dsm5watch.wordpress.com/.

On December 22, I was stunned to receive two emails from the Licensing and Permissions department of American Psychiatric Publishing, claiming that the domain name my site operates under was infringing upon the DSM 5 trademark in violation of United States Trademark Law and that my unauthorized actions may subject me to contributory infringement liability including increased damages for willful infringement. I was told to cease and desist immediately all use of the DSM 5 mark and to provide documentation within ten days confirming I had done so.”

“Given my limited resources compared with APA’s deep pockets, I had no choice but to comply and was forced to change my site’s domain name to https://dxrevisionwatch.wordpress.com.

“Hits to the new site have plummeted dramatically and it will take months for traffic to recover – just at the time when crucial DSM 5 decisions are being made.”

“Was APA justified in seeking to exercise its trademark rights in this situation? Or do APA’s actions fly in the face of accepted internet trademark practice, common sense, and good public relations? I am not a lawyer, but I have made a careful study of ‘U.S. Trademark Law, Rules of Practice & Federal Statutes, U.S. Patent & Trademark Office, November 8, 2011’ and of many other available sources. My conclusion is that APA is making excessive and unwarranted claims for its DSM 5 trademark. Courts have found that using a trademark in a domain or subdomain name is ‘fair use’ if the purpose is non commercial, where there is no intent to mislead, where use of the mark is pertinent to the subject of discussion, and where it is clear that the user is not implying endorsement by, or affiliation with, the holder of the mark.”

“The home page of my site clearly defines its purpose – ‘DSM-5 and ICD-11 Watch – Monitoring the development of DSM-5, ICD-11, ICD-10-CM’ and carries this disclaimer,

‘This site has no connection with and is not endorsed by the American Psychiatric Association (APA), American Psychiatric Publishing Inc., World Health Organization (WHO) or any other organization, institution, corporation or company. This site has no affiliations with any commercial or not-for-profit organization…This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organization, institution, corporation, company or individual.'”

“It puzzles and worries me that APA would seek to suppress my clearly non commercial resource created only to provide information and commentary on the revision process of two internationally used classifications. My only purpose is to inform interested stakeholders and those patient groups whose medical and social care may potentially be impacted by proposals for changes to diagnostic categories and criteria.”

“There is a paradox here. The APA has promoted its commitment to transparency of process, but has rarely demonstrated it. Much has been made of the posting of drafts for public review and soliciting feedback. But to usefully participate in this process, patients, patient groups, and advocacy organizations need to know about proposed changes and when and by what means they can input comment during public review periods. Now, because of APA’s arbitrary actions, it will be harder for them to find the information they need – just when they most need it.”

I am surprised and saddened by APA’s ill-conceived attempt to restrict Suzy Chapman’s free expression on DSM 5. It can only be in the service of the equally unworthy goals of censorship and/or commercialism. I simply can’t imagine that anything should ever be kept secret in the preparation of a diagnostic manual and wonder what in Suzy Chapman’s web site could possibly be so frightening to APA.

Using a trademark to suppress comment is a violation of APA’s public trust to produce the best possible DSM 5. This is another indication that DSM has become too important for public health and for public policy for its revisions to be left under the exclusive control of one professional organization – particularly when that organization’s own financial future is at stake. This basic conflict of interest can be cured only by creating a new institutional framework to supervise the future DSM revisions. Censorship and commercial motivations must not warp the development of a safe and scientifically sound diagnostic manual.

[ENDS]

References:

1] Legal Guide for Bloggers:
https://www.eff.org/issues/bloggers/legal/liability/IP

2] U.S. Trademark Law, Rules of Practice & Federal Statutes, U.S. Patent & Trademark Office, November 8, 2011: http://www.uspto.gov/trademarks/law/tmlaw.pdf

3] Dx Revision Watch: https://dxrevisionwatch.wordpress.com/

4] Dr Allen Frances MD, former chair, DSM-IV Task Force, blogs at “DSM5 in Distress” on “Psychology Today”: http://www.psychologytoday.com/blog/dsm5-in-distress

5] APA’s DSM-5 Development site: http://www.dsm5.org/Pages/Default.aspx

Suzy Chapman

DSM 5 Disorganization, Disarray, and Missed Deadlines Allen Frances, Psychology Today

DSM 5 Disorganization, Disarray, and Missed Deadlines Allen Frances, Psychology Today

Post #120 Shortlink: http://wp.me/pKrrB-1zt

DSM5 in Distress
The DSM’s impact on mental health practice and research.
by Allen Frances, M.D

DSM 5 Disorganization, Disarray, and Missed Deadlines
Beware The Final Mad Rush

Allen Frances, M.D. |  December 29, 2011

Dr Dayle Jones has become one of the world’s leading experts on DSM 5 and on psychiatric diagnosis. As Chair of the American Counseling Association’s DSM 5 Task Force, she closely follows the DSM 5 process and trenchantly critiques the DSM 5 proposals (see her blogs at http://my.counseling.org/category/dayle-jones/).

Dr Jones just sent me the following alarming email: “DSM 5 keeps missing its own deadlines and the DSM 5 publication date is fast approaching. I am afraid there is insufficient time left for thoughtful preparation or adequate public input. Here’s a brief history of DSM 5’s consistent failure to deliver on time…

…Here’s a brief history of DSM 5’s consistent failure to deliver on time.

On the DSM-5 Field Trials in Academic/Large Clinic Settings: These were originally scheduled to begin in 2009, prior even to the draft proposals being reviewed and vetted by outside mental health professionals. But, after much criticism, the DSM-5 Task Force wisely postponed the start date to June 2010. Unfortunately, the Task Force then came up with an impossibly complicated field trial design that was roundly criticized for missing the relevant questions and having a completely unrealistic timetable…

…On the Routine Clinical Practice Field Trial: I have serious concerns whether this will ever get done…Finally, after these many miscues, the field trials ‘officially’ began in September 2011. In November, APA announced it was extending the field trials to March 2012 in order to recruit more participants. There’s a desperate failure motivating this extension- according to the APA flyer, out of “over 5000 clinicians” eligible to participate, only 195 have completed the training, and a mere 70 (1.4%) are enrolling patients.

This field trial is clearly a total bust.

On The Open Periods For Public Comment: APA has repeatedly bragged about the “unprecedented” open comment periods whereby clinicians can post comments about the DSM-5 proposals online during specified time periods. Ironically, the first comment period in February/April 2010 was initiated only after outside pressure insisted that all proposed revisions be reviewed and vetted by the field before field trials could begin. And, interestingly, very few substantive changes have been made in response to public comments since the first drafts were posted- despite the fact that so many DSM 5 proposals have been so heavily criticized. The final public comment period was originally scheduled for September/October 2011, but has been twice postponed because everything is so far behind- first to January/February 2012 and recently to May 2012. Given this late date, new public feedback will almost certainly have no impact whatever on DSM-5 and appears to be no more than a public relations gimmick…”

…In various blogs since, I have warned that the DSM 5 process has suffered from continued disarray- with constantly missed deadlines, reckless proposals, and a poorly written product. I have long predicted that there would be a headlong and heedless rush at the end to meet the new deadline of May 2013 – with the inevitable mistakes, inconsistencies, and poor quality…

…Given all that is undone and poorly done and the ongoing remarkable state of disarray, the May 2013 publication date for DSM 5 has itself become impossibly premature. In any sensible world there would be yet another year’s delay to clean up the current mess. But because projected DSM 5 publishing profits are essential to the meeting the projected APA budget, May 2013 will almost certainly be the one and only deadline DSM 5 will ever meet. It now seems clear that DSM 5 will be born well before its time in an impossibly ragged and possibly unusable state.

Read full article by Allen Frances on Psychology Today

When is the third stakeholder and public review of draft categories and criteria for DSM-5 scheduled?

When is the third stakeholder and public review of draft categories and criteria for DSM-5 scheduled?

Post #119 Shortlink: http://wp.me/pKrrB-1yz

Most likely not according to the schedule posted on the DSM-5 Development website.

The first stakeholder and public review of draft proposals for changes to DSM-IV categories and criteria ran for ten weeks, from February 10 to April 20, 2010. The APA reported receiving over 8,600 comments [1].

The second public review ran for just six weeks, from May 4 to June 15, 2011 (at which point it was extended a further month, to July 15). During this second review period, Task Force Chair, David Kupfer, MD, told Deborah Brauser for Medscape Medical News, that 2,100 individual comments had been submitted [2].

 

Slip slidin’ away…

According to the current DSM-5 Development Timeline, the final draft is scheduled for release in January–February 2012, although the DSM-5 Development home page states:

“In spring 2012, we will open the site for a third and final round of comments from visitors which will again be systematically reviewed by each of the work groups for consideration of additional changes.”

This article, Patient-Centered Revisions to the DSM-5, co-authored by Emily A. Kuhl, PhD, David J. Kupfer, MD, and Darrel A. Regier, MD, MPH, Virtual Mentor. December 2011, Volume 13, Number 12: 873-879.

states:

“…Given the high utility of patient and public feedback in drafting revisions thus far, a third open commenting period has been scheduled to take place in 2012, following completion of the DSM-5 field trials.”

But completion dates for field trials are slipping targets.

(See: DSM 5 in Distress: Disorganization, Disarray, and Missed Deadlines, Beware The Final Mad Rush, Allen Frances, Psychology Today, December 29, 2011).

In this November 9, 2011 report by Deborah Brauser for Medscape Medical News, DSM-5 Task Force vice-chair, Darrel Regier, MD, predicts a final public feedback period “no later than May 2012.”

APA Answers DSM-5 Critics

“…Although the routine clinical settings field trials were expected to be completed by the end of December, it has been extended to around March 2012. Dr. Regier said that this will probably push back the final public feedback period to no later than May 2012.”

So, April–May? May–June? I will update when a firm release date is published or other information received.

DSM-5 Development Timeline

References

[1] DSM-5 Development website

[2] DSM-5 Task Force Ponders Round 2 of Public Feedback: Deborah Brauser for Medscape Medical News
August 31, 2011 [Registration required to view this Medscape article.]

[3] Current DSM-5 proposals for changes to DSM-IV categories and criteria

[4] DSM-5 Development Timeline

CFSAC November 2011 meeting: videos, presentations and coding of CFS in ICD-10-CM

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)

Post #118 Shortlink: http://wp.me/pKrrB-1xk

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

Excludes1 chronic fatigue, unspecified (R53.82)
                 neurasthenia (F48.8) 

 

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:

 http://www.hhs.gov/advcomcfs/recommendations/05112011.html 

The CFSAC May 2011 Recommendation:

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]

CFSAC November 9, 2011, 1:30 pm – 4:30 pm

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.

 

Key documents from the November CFSAC meeting

CFSAC Meetings Page

November 8-9, 2011 CFSAC Meeting Agenda

Presentations

Videos of proceedings

Day One: Tuesday, November 8, 2011

CFSAC November 8, 2011; 9:00 – 11:15 am |  Presentation by Donna Pickett, NCHS  Presentation slides 
CFSAC November 8, 2011; 11:30 am – 1:00 pm |
CFSAC November 8, 2011, 2 pm – 4 pm |
CFSAC November 8, 2011, 4 pm – 5 pm |

Day Two: Wednesday, November 9, 2011

CFSAC November 9, 2011, 9 am – 10:30 am
CFSAC November 9, 2011, 10:45 am – 1:15 pm |
CFSAC November 9, 2011, 1:30 pm – 4:30 pm |  Discussion of wording of Recommendation at 1hr 12mins

Presentations

Tuesday, November 8, 2011

Donna Pickett, CDC  International Classification of Diseases – Clinical Modification (PDF– 91.8 KB)

Future Interdisciplinary Research for ME/CFS that Require a Variety of Scientific Disciplines (PDF –  1,008 KB)

Wednesday, November 9, 2011

International Classification of Functioning, Disability and Health: Application and Relevance to Chronic Fatigue Syndrome (PDF – 1 MB)
CDC Report for CFSAC – CFS Activities Since May 2011 (PDF – 208 KB)
Minimum Data Elements for Research Reports on CFS (PDF – 1,016 KB)
NIH Report for CFSAC (PDF – 241 KB)

Public Testimony 

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:

http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_sillverman.pdf

 

The two proposals

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)”.

[Image source: Page 11, Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011  http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf ]

 

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:

Source: ICD-10-CM TABULAR LIST of DISEASES and INJURIES, Instructional Notations 

Excludes Notes

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.

 

References

[1] Meeting materials September 14, 2011 meeting of the ICD-9-CM Coordination and Maintenance Committee 

[2] Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

[3] Extracts from Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)     [Post sets out proposals: Option 1 from Coalition4ME/CFS and Option 2 from NCHS, which are also set about below.]

[4] Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary of Diagnosis Presentations September 14, 2011 (CFS Coding)

[5] Audio of September 14 NCHS ICD-9-CM meeting http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[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.]

Psychiatric Times Editor invites readership to submit views on DSM-5 for potential publication

Editor of Psychiatric Times invites its readership to submit views on DSM-5 for potential publication

Post #117 Shortlink: http://wp.me/pKrrB-1sx

Although the current DSM-5 Development Timeline has a third draft scheduled for release in January-February, 2012, for a two month period for public comment, this final draft is expected to be delayed until spring, pending completion of the DSM-5 field trials.

In this November 9, 2011 report by Deborah Brouser for Medcape Medical News, DSM-5 Task Force vice-chair, Darrel Regier, MD, says “no later than May 2012.”

 APA Answers DSM-5 Critics

“…Although the routine clinical settings field trials were expected to be completed by the end of December, it has been extended to around March 2012. Dr. Regier said that this will probably push back the final public feedback period to no later than May 2012.”

When the third and final draft has been published, a notice and links will be posted on my sites with instructions on how to register with the DSM-5 Development site for submitting feedback to the Task Force and 13 work groups.

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

December 16, 2011

In a brief Editorial entitled The Debate Over DSM-5: We Invite Your Views, James L. Knoll IV, MD, Editor, Psychiatric Times, clarifies Psychiatric Times’s position with regard to the journal’s intent behind posting the many blogs about DSM-5 that appear on its web site.

Dr Knoll encourages and invites readers to submit their viewpoints on DSM-5 “in the spirit of collegial and scientific investigation.”

Dr Knoll writes that manuscripts and letters sent to editor@PsychiatricTimes.com will be reviewed for possible publication either in print or on www.PsychiatricTimes.com.

Read Editorial here

(Free registration is required for access to Pyschiatric Times Editorial.)

 

Related content:

DSM-5 on Psychiatric Times January 3 – December 16, 2011

December 16, 2011
The Debate Over DSM-5: We Invite Your Views

November 23, 2011
DSM-5: APA Responds to American Counseling Association Concerns

November 21, 2011
DSM-5: Petitions, Predictions, and Prescriptions

November 17, 2011
Counselors Turn Against DSM-5: Can APA Ignore 120,000 Users?

November 11, 2011
DSM-5: Living Document or Dead on Arrival?

November 10, 2011
The User’s Revolt Against DSM-5: Will It Work?

November 8, 2011
APA Responds Lamely to the Petition to Reform DSM-5

November 7, 2011
The Great DSM-5 Personality Bazaar

November 4, 2011
Why Psychiatrists Should Sign The Petition To Reform DSM-5

November 3, 2011
Why Doesn’t DSM-5 Defend Itself? Perhaps Because No Defense Is Possible

November 2, 2011
DSM-5 Will Not Be Credible Without An Independent Scientific Review

November 1, 2011
DSM-5 Against Everyone Else: Research Types Just Don’t Understand The Clinical World

October 31, 2011
What Would A Useful DSM-5 Look Like? And An Update On The Petition Drive

October 26, 2011
Petition Against DSM-5 Gets Off To Racing Start: A Game Changer?

October 24, 2011
Psychologists Petition Against DSM-5: Users Revolt Should Capture APA Attention
Several divisions of the American Psychological Association have just written an open letter highly critical of DSM-5.

October 13, 2011
Should Temper Tantrums Be Made Into A DSM-5 Diagnosis?

October 12, 2011
Do We Need a DSM-V?

September 30, 2011
PTSD, DSM-5, and Forensic Misuse

September 29, 2011
An Alternative To The DSM-5 Personality Proposals

September 21, 2011
Why Psychiatry Is Wonderful—Even If DSM-5 Isn’t

September 14, 2011
DSM-5 Proposals Should Undergo An Independent Cochrane Review Of Scientific Evidence

September 13, 2011
Warning to DSM-5: Mental Health Clinicians Can Use ICD-10-CM

August 23, 2011
The Leaders’ Report on DSM-5

August 10, 2011
DSM-5 Stubbornly Circles The Wagons Against Opposition From The Field
Bob Spitzer was prophetic 4 years ago when he warned that the closed DSM-5 process would lead to a flawed DSM-5 product…

August 5, 2011
Scandalous Off Label Use Of Antipsychotics: Another Warning For DSM-5

July 27, 2011
DSM-5 Will Further Inflate the ADD Bubble: Child Work Group Fails to Learn From Experience

July 25, 2011
The British Psychological Society Condemns DSM-5

June 8, 2011
Who Needs DSM-5? A Strong Warning Comes From Professional Counselors

May 12, 2011
DSM-5 Rejects Coercive Paraphilia: Once Again Confirming That Rape Is Not A Mental Disorder

April 28, 2011
Marijuana Withdrawal Syndrome: Should Cannabis Withdrawal Disorder Be Included in DSM-5?

April 15, 2011
The Constant DSM-5 Missed Deadlines And Their Consequences: the Future is Closing In
Aside from its reckless proposals for dangerous new diagnoses, the most characteristic thing about DSM-5 has been its remarkably poor planning…

April 13, 2011
DSM-5 and the NIMH Research Domain Criteria Project

April 11, 2011
DSM-5 Will Medicalize Everyday Worries Into Generalized Anxiety Disorder

February 25, 2011
DSM-5: When To Change and When Not to Change

February 22, 2011
Temper Tantrums, Mental disorder, and DSM-5: The Case for Caution

January 25, 2011
DSM-5 Promotes A 60% Jump In The Rate Of Alcohol Use Disorders

January 20, 2011
An Independent View of DSM-5

January 19, 2011
DSM-5: A Year End Summary

January 11, 2011
DSM-5 and Practical Consequences

January 10, 2011
Does Research Support “Craving” as a Core Symptom of Substance Use Disorders in DSM-5?

January 3, 2011
DSM-5: Dissent From Within

British Psychological Society issues statement in response to DSM-5 encouraging members to sign Coalition for DSM-5 Reform petition

British Psychological Society issues statement in response to DSM-5 encouraging members to sign Coalition for DSM-5 Reform petition for mental health professionals

Post #116 Shortlinkhttp://wp.me/pKrrB-1sa

Society issues statement in response to DSM-5

The Society has today (13 December 2011) released a statement expressing concerns regarding the proposed revisions of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association, which is one the main internationally-used classification systems for diagnosis of people with mental health problems in clinical settings and for research trials.

The Society for Humanistic Psychology (Division 32) of the American Psychological Association (APA) has recently published an open letter to the DSM-5 taskforce raising a number of concerns about the draft revisions proposed for DSM-5 and citing a number of issues raised previously by the BPS.

In its statement today, the Society shares the concerns expressed in the open letter from the Society of Humanistic Psychology (Division 32) of the APA and encourages members of the Society to read the letter themselves and consider signing the petition.

David Murphy, Chair of the Society’s Professional Practice Board said:

“The Society recognises that a range of views exist amongst psychologists, and other mental health professionals, regarding the validity and usefulness of diagnostic frameworks in general and the Diagnostic and Statistical Manual of the American Psychiatric Association, in particular.

“However, there is a widespread consensus amongst our members that some of the changes proposed for the new framework could lead to potentially stigmatizing medical labels being inappropriately applied to normal experiences and also to the unnecessary use of potentially harmful interventions.

“We therefore urge the DSM 5 taskforce to consider seriously all the issues that have been raised and we would echo the American Psychological Association’s call for the taskforce to adhere to an open transparent process based on the best available science and in the best interest of the public”.

You can read the Society statement in full online.

Open PDF on the BPS site here: BPS Statement on DSM-5 12.12.11

Or open PDF here, on Dx Revision Watch: BPS statement on DSM-5 12-12-2011

Text version

British Psychological Society statement on the open letter to the DSM-5 Taskforce

The British Psychological Society recognizes that a range of views exist amongst psychologists, and other mental health professionals, regarding the validity and usefulness of diagnostic frameworks in mental health in general, and the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association in particular.

The Society for Humanistic Psychology (Division 32) of the American Psychological Association (APA) has recently published an open letter to the DSM-5 taskforce raising a number of concerns about the draft revisions proposed for DSM-5 which has, to date, been endorsed by 12 other APA Divisions.

A major concern raised in the letter is that the proposed revisions include lowering diagnostic thresholds across a range of disorders. It is feared that this could lead to medical explanations being applied to normal experiences, and also to the unnecessary use of potentially harmful interventions.

Particular concern is expressed about the inclusion of a new diagnostic category “Attenuated Psychosis Syndrome”. This proposes to include individuals who are experiencing hallucinations, delusions or disorganized speech “in an attenuated form with intact reality testing” but who do not meet current criteria for a psychotic disorder. The Society shares the concerns expressed in the open letter about the potentially harmful consequences of lowering diagnostic thresholds in general and the questionable validity of this proposed diagnosis in particular.

Another concern raised is about the impact of proposed revisions on vulnerable groups such as children and the elderly. The letter highlights that the proposed new diagnostic category “Mild Neurocognitive Disorder” might be diagnosed in elderly people whose memory decline simply reflects normal ageing. The Society welcomes the use of an  objective psychometric criterion within this particular DSM-5 diagnosis but shares concerns expressed in the letter about potential for misdiagnosis of normal ageing. We would further highlight the importance of valid psychological interpretation of test results since the proposed psychometric threshold encompasses 1 in 8 of the normal population. There is a particular danger that cognitive functioning of people from ethnic minorities is under-represented on psychometric tests. The Society also shares concerns about the potential for children and adolescents to be misdiagnosed with Disruptive Mood Deregulation Disorder.

We also concur that there is a lack of a solid basis in clinical research literature for this disorder and are also concerned about the risk of harm from inappropriate treatment with neuroleptic medication.

The proposals for the revision of the personality disorders section in DSM-5 are described in the open letter as “perplexing”, “complex” and “idiosyncratic”. The Society has welcomed the move to a dimensional-categorical model for personality disorder. However, we have said that this has not been as visible as expected in the draft revisions.

Moreover, we share concerns expressed in the open letter about the inconsistency of the proposed changes and their limited empirical basis.

Finally, the open letter also draws attention to proposals to revise the basic “Definition of a Mental Disorder” and, in particular, a statement proposed by Stein et al that it “reflects an underlying psychobiological dysfunction”. The Society shares concerns about any unsubstantiated shift in emphasis towards biological factors and in particular the entirely unjustified assertion that all mental disorders represent some form of biological dysfunction. We are, however, reassured by the response from the APA task force (4 November 2011) which states that there is no intent “to diminish the importance of environmental and cultural exposure factors” and hope that this will be reflected in the final version.

In conclusion, the British Psychological Society endorses the concerns expressed in the open letter from the Society of Humanistic Psychology (Division 32) of the APA and encourage members to view the letter themselves and consider signing the petition (http://www.ipetitions.com/petition/dsm5/ ). We also urge the DSM 5 taskforce to consider seriously the issues raised therein. These have been now been endorsed by a broad range of experts in mental health, including members of the British Psychological Society and two chairs of previous DSM revision taskforces.

We are, however, encouraged that the DSM taskforce has already responded positively to the open letter and that in their letter (4 November 2011) they emphasized that the manual is “still more than a year away from publication and is continually being refined and reworked”. They commented that “Final decisions about proposed revisions will be made on the basis of field trial data as well on a full consideration of other issues such as those raised by the signatories of the petition.”

In a statement issued on 2 December 2011 the American Psychological Association (APA) called upon the DSM-5 Task Force to “adhere to an open, transparent process based on the best available science and in the best interest of the public”. The British Psychological Society would certainly echo this call.

The final draft of the DSM-5 criteria is due for publication in early 2012 followed by a third, two month, period of public feedback. The Society encourages those members who have relevant expertise to contribute to the on-going process of refinement and improvement of the DSM-5. As a Society we are, as is our counterpart the APA, committed to promoting and disseminating psychological knowledge and, as such, we are keen to ensure that the final version of DSM-5, and other internationally used diagnostic frameworks such as ICD-11, are based on the best available psychological science and will continue to monitor the DSM-5 revision process and contribute further as appropriate.

[Ends]

References:

1] DSM-5 Development site
2] Somatic Symptoms Disorders current proposals
3] DSM-5 Timeline 
4] Coalition for DSM-5 Reform website
5] Petition for mental health professionals can be signed here
6] Dr Allen Frances MD, Chair, DSM-IV Task Force, blogs on DSM-5 on “Psychology Today”
7] Updates and developments on the Coalition for DSM-5 Reform’s petition
8] Media coverage for Coalition for DSM-5 Reform’s petition