ICD-11 Beta drafting platform for release in May 2012

ICD-11 Beta drafting platform for release in May 2012

Post #139 Shortlink: http://wp.me/pKrrB-1SE

ICD-11 Beta drafting platform

ICD Revision on Facebook has announced that a ‎4th Face to Face meeting of the ICD Revision Topic Advisory Group for Internal Medicine (TAG IM) was held recently, in Tokyo.

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.

View the presentation here:


Tokyo 2012 ustun (show) by Bedirhan Ustun on Feb 10, 2012

for which it states:

“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).”

This is the most recent available version of the Content Model Reference Guide January 2011

This iCAT Glossary page gives an overview of the 13 Content Model parameters.

See also Post #62: ICD-11 Content Model Reference Guide: version for December 2010


New Beta drafting browser

In May 2011, a publicly viewable ICD-11 Alpha Browser platform was launched.

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:

ICD Revision Process Alpha Evaluation Meeting 11 – 14 April 2011: The Way Forward?

ICD Revision Process Alpha Evaluation Meeting documents and PowerPoint slide presentations


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.


CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

Shortlink Post #129: http://wp.me/pKrrB-1Fn

The fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on November 8-9, 2011.

Minutes and Committee’s Recommendations to HHS have now been posted on the CFSAC website.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) 

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. 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 Meetings page is here

               Minutes Day One CFSAC Fall 2011 meeting

               Minutes Day Two CFSAC Fall 2011 meeting

Presentations, Public Testimony and links for Videos for Day One and Day Two


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:

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)


Recommendations out of the Fall 2011 CFSAC Meeting

CFSAC Recommendations – November 8-9, 2011

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

               November 2011 Recommendations Letter to the Secretary (PDF 31 KB)

               November 2011 CFSAC Recommendations Chart (PDF 138 KB)

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.


Related post

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), November 27, 2011

Pity the poor American Psychiatric Association, Parts 1 and 2: Gary Greenberg

Pity the poor American Psychiatric Association, Parts 1 and 2: Gary Greenberg

Post #124 Shortlink: http://wp.me/pKrrB-1Ca

On January 03, I reported that the Licensing and Permissions department of American Psychiatric Publishing, A Division of American Psychiatric Association, served me with two “cease and desist” letters, just before Christmas, claiming use of the registered trademark DSM 5 within my site’s subdomain name was improper, in violation of United States Trademark Law, and that my unauthorized 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 and that the DSM 5 mark is removed from the domain name http://dsm5watch.wordpress.com/.

Whether American Psychiatric Publishing might be considered to have a case against me or whether the use of the DSM 5 mark within my subdomain name might be found by a court to be legitimate under “fair use” – given that my site is non commercial, carries a clear disclaimer, with no intent to confuse, mislead or misrepresent my relationship with the APA or its publishing arm – I elected to change the site’s URL the following day.

The second letter demanded that I cease and desist immediately any and all use of the “DSM 5 mark” in the domain names of three additional internet platforms.

I do not own any of these three platforms or have any responsibility for them.

Evidently American Psychiatric Publishing’s Licensing and Permissions department omitted to establish ownership before issuing me with “cease and desist” demands and threats of legal action, on behalf of the American Psychiatric Association. I have received no apology nor explanation for their error. (I am not in a position to disclose the content of the second “cease and desist” letter since it relates to matters concerning a third party.)

Allen Frances, MD, professor emeritus at Duke, chaired the Task Force that had oversight of the development of DSM-IV and has been a fierce critic of the revision process towards the forthcoming edition of the Diagnostic and Statistical Manual of Mental Disorders, DSM-5. On Tuesday, Frances publicly supported my position in a commentary published on his DSM5 in Distress blog, hosted at Psychology Today.

Other blogging psychiatrists, allied mental health professionals and the author, Gary Greenberg, are supporting Frances in what they see as a heavy-handed, arrogant, bizarre and politically damaging move on the part of American Psychiatric Publishing’s Licensing and Permissions department in exercising trademark rights and making threats of legal action against a non commercial, responsible UK patient advocate who provides information and publishes commentary around the revision of two internationally used classification systems.

Commentaries from bloggers are being collated in this post:

Media coverage: American Psychiatric Association (APA) ”cease and desist” v DSM-5 Watch website; Legal information and resources for bloggers and site owners

Today, Gary Greenberg, author of Manufacturing Depression, and Inside the Battle to Define Mental Illness, Wired, December 27, 2010, has published a two part article on his website.

Read Part 1 here:

Pity the poor American Psychiatric Association, Part 1

Read Part Two, here, or published below, with the author’s permission:

Pity the American Psychiatric Association, Part 2

Gary Greenberg Blog


January 5th, 2012

In the last installment, we found out that the APA is trying to thread a camel through the eye of a needle. In their own view, they have to revise the DSM. To do this, they have to address the reification problem – i.e., that many of us, civilians and clinicians alike, have taken the DSM too seriously and treated the disorders it lists as actual diseases rather than fictive placeholders. To address it, they have to admit that it is a problem, and that they don’t have a solution. They have to fix the plane while it is airborne, but they don’t have the tools or the knowhow to do so, and the more it becomes clear that the plane is in trouble, and the more the mechanics are swearing and banging belowdecks, the more likely it is that the passengers will find out and start asking for a quick landing and a voucher on another airline.

So it is very important to try to keep the passengers in the dark as long as possible. Or, to put it another way, the APA has a product to protect, and the best way to do that, from a corporation’s point of view, is to control the narrative, as the pundits say, about the DSM.

Now, even before the recent events, which I’ll get to in a second, I knew this, because last year I wrote an article about the DSM revision for Wired about the argument between Allen Frances and Michael First, the major players in the DSM-IV revision, and Darrel Regier and David Kupfer, their counterparts on DSM-5. The article was no great shakes, just your usual lunchbucket magazine piece, fair and balanced and bland and forgettable as a soy hot dog with French’s mustard on it. I think Frances came out a little better, but that’s because I think he’s closer to the truth of the matter, and, as one of his colleagues has reminded me about a million times, he’s retired, so he can afford to speak truth to power. And the APA sounded at least reasonable in its willingness to acknowledge that the DSM is more provisional than it is generally made out to be.

Anyway, the forgettable magazine piece is in the process of becoming a book which will probably also be forgettable. And so I went back to my transcripts of conversations with the APA/DSM folks and of course found out all the questions I’d failed to ask and the points I’d failed to get clarified. So I emailed the APA pr apparatchicks and asked them to enlighten me. When exactly did the APA stop taking money from the drug companies for their educational programs, and how exactly was the embargo worded? And did I understand Regier correctly about a highly technical point that I won’t bore you with.

Here’s what I got back for a response.

Dear Gary,

We have received several requests from you for access to APA experts and positions on issues related to the DSM for the book you’re writing. I wanted you to know that we will not be working with you on this project. Last year we gave you free access to several of our officers and DSM experts for the article you wrote for Wired. In spite of the fact that we went to considerable lengths to work with you, the article you produced was deeply negative and biased toward the APA. Because of this track record, we are not interested in working with you further as we have no reason to expect that we would be treated any more fairly in your book than we were in the Wired article.

Now, why the APA would want to hand me such first-rate evidence of its own paranoia – and spare me having to listen to their talking points, not to mention preemptively decline to have a crack at responding to my book– is beyond me. It’s as incomprehensible as the letter itself, or at least the part where they complain that I was “biased toward” them. But I gather they think that they will make it harder for me to write my book, that maybe if they don’t cooperate I won’t do it. It is in any event evidence of an awfully thin skin, and of a bunker mentality. More disturbingly, it is evidence that they don’t really take their public trust too seriously. Especially when you contrast this to the National institutes of Mental Health, and its director Tom Insel, of whose work I’ve been much more directly critical, and who took the time to read it, and who still bent over backwards to get me an hour of face time that was cordial and fascinating. It’s enough to make you a fan of the government.

So to the recent events. Suzy Chapman is a patient advocate from the UK. Her website was an excellent compendium of information, archival material, reports, and, yes, criticism of the DSM-5. I have been using it in my research and admiring her tenacity and her fairmindedness. She has opinions but they are way in the background and neither shrill nor strident.

Chapman called her website DSM-5 and ICD Watch: Monitoring the Development of DSM-5, ICD-11 and ICD-10-CM. (The ICD’s are diagnostic systems run by the World Health Organization, and they are also under revision), and her subdomain name was


She also put in a disclaimer, made it clear that she had nothing to do with APA, that she wasn’t dispensing medical, legal, or technical advice. But that didn’t stop the APA from going after her. Not long after they got their DSM-5 trademark approved, and right before Christmas, they sent her this nice holiday card, which she’s kindly allowed me to post here, with her redactions.

Name: Redacted
Email: Redacted
Message: December 22, 2011

Suzy Chapman


RE: DSM 5 Trademark Violation

Dear Ms. Chapman:
It has come to our attention that the website http://dsm5watch.wordpress.com/ is infringing upon the American Psychiatric Association’s trademark DSM 5 (serial number 85161695) and is in violation of federal law by using it as a domain name.

According to our records, the American Psychiatric Association has not authorized this use of the DSM 5 trademark. Consequently, this use of the DSM 5 mark is improper and is in violation of United States Trademark Law. Your unauthorized actions may subject you to contributory infringement liability including increased damages for willful infringement. We request that you immediately cease and desist any and all use of the DSM 5 mark. Furthermore, we request that the DSM 5 mark is removed from the domain name http://dsm5watch.wordpress.com/ . The American Psychiatric Association has a good-faith belief that the above-identified website’s use of the DSM 5 name and marks is not authorized by the American Psychiatric Association, its agents, or the law. I declare under penalty of perjury that the foregoing is true and correct and that I am authorized to act on behalf of the American Psychiatric Association.

Please confirm, within the next ten (10) days of the date of this letter, that you will stop using our trademark in http://dsm5watch.wordpress.com/ , and provide documentation confirming that you have. Any further use will be considered an infringement.

Thank you for your prompt cooperation in resolving this issue.

Very truly yours,

Licensing and Permissions Manager American Psychiatric Publishing, A Division of American Psychiatric Association
1000 Wilson Boulevard Suite 1825 Arlington, VA 22209
E-mail: Redacted

Chapman, not in a position to fight, complied almost immediately. Her website is now available at


where you can also read about this kerfuffle in more detail.

Why the APA would make themselves into a Goliath is not clear to me. The DSM offers Paranoid Personality Disorder, but this episode makes me wish Frances hadn’t shied away from his proposal for a Self-Defeating Personality Disorder. Because it is not clear to me how they win this one. Not that I really care, at least not about the APA’s fortunes, but are they trying to prove Frances right about his recent, somewhat incendiary, claim that the APA no longer deserves the DSM franchise?

I did ask one of the APA’s trustees about this. He wrote:

As for whether the intellectual property angle was driving them to crush the lady in Great Britain or their wanting to crush her because she was being critical, I think when the history is finally known, it will be the former. Maybe we can think of someone using “DSM-5″ who is friendly and note the reaction.

I do like this idea of conducting an experiment. And he may well be correct, that this is the APA worrying about its intellectual property rather than just trying to make Suzy Chapman miserable or squash dissent. Will they go after the sites that have popped up predictably in the wake of publicity of their enforcement action, like www.dsm5sucks.com and the twitter account @dsm5nonsense (whose owner dares the APA to come after them)? But in the meantime, this only proves two points:

First, this organization is at least terribly tone deaf. Going after Suzy Chapman is sort of like Lowe’s yanking its ads from a tv show depicting Muslims as normal people – a hugely blunderous action taken to please a tiny constituency, which can’t possibly earn them anything but scorn and opprobrium. Either they don’t know how they come off or they don’t care. Either way, it’s pretty disturbingly arrogant behavior for an organization that has so much to say about how public money is spent.

Second, the APA is a corporation that, like any other, will do anything to protect itself from harm, real or imagined. And it spends a lot of time imagining dangers. That’s probably because it knows its primary product – the DSM, which accounts for ten percent of its income and a great deal of its clout – is faulty, and it knows that it doesn’t quite know how to fix it without risking making it much much worse.


Legal information and resources for bloggers and site owners:

1] Wipedia article: Cease and desist

2] Wipedia article: Strategic lawsuit against public participation (SLAPP)

3] Electronic Frontier Foundation (EFF)

EFF Bloggers’ Rights

EFF Legal Guide for Bloggers

4] Chilling Effects

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

New: Online ICD-10 Version for 2010

New: Online ICD-10 Version for 2010

Post #106 Shortlink: http://wp.me/pKrrB-1jm

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:


would need updating to:


and the Chapter V entry for the F40-48 categories:


would need updating to:




to point to F45 Somatoform Disorders



to point to F48.0 Neurasthenia.

Compiled by Suzy Chapman

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary document (CFS coding)

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

Post #104 Shortlink: http://wp.me/pKrrB-1iN

You can download an Audio of the September 14 NCHS meeting here: http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[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.]

Summary of Volumes 1 and 2, Diagnosis Presentations
September 14, 2011



Donna Pickett, co-chair of the committee, welcomed the members of the audience to the diagnosis portion of the meeting. She reviewed the timeline included at the beginning of the topic packet informing the attendees of the deadline for written comments on topics presented at this meeting. All diagnosis topics presented during the meeting are being considered for October 1, 2013 implementation.

Written comments must be received by NCHS staff by November 18, 2011. Ms. Pickett requested that comments be sent via electronic mail to the following email address nchsicd9CM@cdc.gov since regular mail is often delayed. Contact information for all NCHS staff and the NCHS website are included in the topic packet. Attendees were also reminded that the full topic packet is currently posted on the NCHS website.


Page 2

Comments and discussion on the topics presented on September 14, 2011 were as follows:

Chronic Fatigue Syndrome

Mary Dimmock representing the Coalition 4 ME/CFS gave a presentation on the Coalition’s understanding of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) as well as their proposal. They presented additional options for coding of these two diagnoses. NCHS responded that since they were not aware of this additional option, until today’s meeting, the proposal would remain with the two options offered (one from NCHS and one from the requestor).

There were many comments from the audience including the following:

There was general support for NCHS proposed option 2, moving CFS to ICD-10-CM Chapter 6, Diseases of the Nervous System but retaining separate codes for CFS vs. ME. Reasons given for retaining separate codes included agreement that it is important to retain ability to do data extraction on the two conditions separately vs. combining them if desired. In addition, the CFS may not always be able to be identified as postviral.

Though the requestor had asked to have the term “benign” deleted from inclusion term “benign myalgic encephalomyelitis,” NCHS indicated it should remain somewhere at G93.3 to maintain compatibility with WHO ICD-10. Comments on this indicated that it should be added to proposed new code G93.31 with benign as a nonessential modifier.

[Ed: It was suggested at the meeting that the modifier “Benign” might appear in parentheses at the end of  “Myalgic encephalomyelitis”.]

It was recommended to change the excludes2 note, at proposed new code G93.32, to an exludes1 since it is not likely that one would have both chronic fatigue syndrome and a chronic fatigue, NOS from some other condition. There is no need to code chronic fatigue NOS separate from the CFS.

There was a general question asked about how this request can be considered for October 1, 2012 since it is not a new disease. There was also general support that if the change is approved to move CFS from Chapter 18, code R53.82, to a code within Chapter 6 it should occur in time for the October 1, 2013 implementation of ICD-10-CM.

There was general agreement, by those in the audience, that the term “myalgic encephalomyelitis” is not seen in medical records.

One commenter, representing Coalition4 ME/CFS indicated that ME and CFS should not be separated since it goes against the definition of the 2011 ME ICC (an international committee). Her opinion was that treatment is the same for both conditions, literature refers to ME and CFS together, and that the U.S. is behind the international recognition of these two conditions being the same.


The audience was asked to carefully review the proposals following the meeting and to submit written comments by the November 18, 2011 deadline.

[Extract ends]

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

Related material:

1] Full NCHS meeting Proposals document:


2] Full NCHS meeting Summary document:


3] Post: Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

4] Post: Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

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

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

Post #102 Shortlink: http://wp.me/pKrrB-1hd

Coalition4ME/CFS initiative



CFSAC discusses ICD-10-CM coding concerns

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 (DHHS) on issues related to chronic fatigue syndrome (CFS).

Go here for the current Roster of Voting and Ex Officio committee members.

CFSAC holds twice yearly public meetings and meeting Agendas, Minutes, Meeting Materials, Presentations, Public Testimonies, Meeting Videocasts and CFSAC’s Recommendations to the DHHS are published on the CFSAC website.

The National Center for Health Statistics (NCHS), the Federal agency responsible for use of the WHO’s International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10) in the United States, has developed a clinical modification of the classification for morbidity purposes. The ICD-10 is used to code and classify mortality data from death certificates, having replaced ICD-9 for this purpose as of January 1, 1999.

The WHO has authorized the development of an adaptation of ICD-10 for use in the United States for U.S. government purposes. Although a U.S. specific adaptation, with U.S. committees and technical advisory panels responsible for its development and oversight, all modifications to the ICD-10 must conform to WHO ICD conventions.

ICD-10-CM is planned as the replacement for ICD-9-CM, volumes 1 and 2.

U.S. lags behind

While much of the world has been using the ICD-10 for many years and is looking to move onto ICD-11 (currently  scheduled for implementation in 2015), the U.S. has been slow to make the transition from ICD-9-CM to a “clinical modification” of ICD-10.

ICD-10-CM development has been a long drawn out process and ICD-10-CM isn’t scheduled for implementation until October 1, 2013.

So when U.S. coders, clinicians, medical insurers and reimbursers are adapting to using ICD-10-CM, much of the rest of the world will be gearing up for ICD-11, which is planned to be a significantly different product to ICD-10, in terms of its structure, content, presentation, accessibility and its capacity, as an electronic publication, for continuous update and revision.


CFSAC new Recommendation to HHS

At the last CFSAC meeting (May 10-11, 2011), an hour long slot had been tabled on the agenda for Day One for discussion of concerns around the NCHS’s current proposals for the coding of CFS within ICD-10-CM.

The Committee was also informed of the considerable concerns for the implications for CFS and ME patients of the draft criteria and new categories being proposed by the DSM-5 “Somatic Symptom Disorders” work group.

A new CFSAC Recommendation to HHS was proposed by Committee member, Dr Lenny Jason, seconded by Dr Nancy Klimas, and voted unanimously in favour of by the Committee [1].

This new Recommendation, set out below, restates and expands on the Recommendation that CFSAC had made to HHS, in August 2005.

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.)     Source: CFSAC Recommendations – May 10-11, 2011


What are the current proposals?

For ICD-10-CM, the current proposals for the classification of PVFS and ME are:

that Postviral fatigue syndrome would be classified within Chapter 6 Diseases of the nervous system under the parent class “G93 Other disorders of brain”, coded at G93.3.

(Benign) Myalgic encephalomyelitis would be classified as an Inclusion term under Title category “G93.3 Postviral fatigue syndrome”.

This is in keeping with the international ICD-10, from which ICD-10-CM has been developed. See Footnote [4] for link to page setting out current proposals for ICD-10-CM.

In ICD-10, Chronic fatigue syndrome is indexed to G93.3 in Volume 3 The Alphabetical Index. 

In ICD-10-CA, the Canadian Clinical Modification of ICD-10, Chronic fatigue syndrome is classified in the Tabular List in Chapter 6, under “G93.3 Postviral fatigue syndrome”.

For ICD-11, the proposal is that all three terms should be classified within Chapter 6.

But for ICD-10-CM, instead of coding Chronic fatigue syndrome to G93.3, the proposal is  to retain Chronic fatigue syndrome in the R codes chapter (which is Chapter 16 in ICD-9-CM and will be Chapter 18 in ICD-10-CM), where it would be coded thus:

Chapter 18  (Symptoms and signs and ill defined conditions)


R53.8 Other malaise and fatigue

R53 Malaise and fatigue

R53.82 Chronic fatigue, unspecified
              Chronic fatigue syndrome (NOS)

Excludes1: postviral fatigue syndrome (G93.3)

(In ICD, NOS stands for “Not Otherwise Specified”.)


What is NCHS’s rationale for retaining CFS as (CFS NOS) in the R code chapter?

According to the background document Dr Wanda Jones presented to the Committee:

As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82).

If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.

There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward.

Source: Extract: ICD-related questions from CFSAC for May 2011 meeting

Dr. Jones clarified for the Committee that if, in the clinician’s judgment, it was considered there is enough evidence to attribute the patient’s illness to a viral illness onset then the clinician could code to G93.3 (Postviral fatigue syndrome). If “however they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes.” [1]
It has been further confirmed that testing for a viral illness is not required to assign a code – that coding is based on the clinician’s judgment.
And from the NCHS September 14 meeting Proposals document:
In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.

Is this a new proposal?

No. This is a long-standing proposal that had been known about since at least 2007. It has been discussed on forums and raised in mailings on the Co-Cure Listserv list in 2007 and 2008 by U.S. advocates Mary Schweitzer and Jean Harrison, and flagged up by others in the U.S. and elsewhere, in the last couple of years.

The proposed coding of CFS, PVFS and (B) ME in the forthcoming ICD-10-CM had already been discussed at public CFSAC meetings in June 2004, when the NCHS’s, Donna Pickett, had given a presentation and again in September 2004, January 2005 and May 2010.

So the proposed coding of PVFS, (B) ME and CFS for ICD-10-CM is by no means a new issue.

As noted, ICD-10-CM has been under development for many years. A public comment period ran from December 1997 through February 1998. In 2001, the proposal had been that all three terms should be coded to G93.3, in keeping with the placement in the WHO’s ICD-10 [2].

I am advised that at one point, all three terms: PVFS, (B) ME and CFS, were proposed to be coded under G93.3, with a “CFS NOS” retained in the R codes. But that subsequently, the placement of CFS in Chapter 6 under the G93 parent class was deleted, leaving “CFS NOS” orphaned, in Chapter 18.


What is the ICD “R code” chapter for?

There is a four page ICD-11 Discussion Document that is worth a read: Signs and Symptoms [Considerations for handling categories and concepts currently found in chapter 18 of ICD-10, “SYMPTOMS, SIGNS AND ABNORMAL CLINICAL AND
LABORATORY FINDINGS NOT ELSEWHERE CLASSIFIED”, (R-codes), authors: Aymé, Chalmers, Chute, Jakob.] Open here: Discussion: Signs and Symptoms (Chapter 18)

The R codes chapter is the ICD chapter for “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)”

“This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill defined conditions regarding which no diagnosis classifiable elsewhere is recorded.” Source: ICD-10-CM Chapter 18, 2011 release.


Dustbin Diagnosis

At the May CFSAC meeting, Committee member, Steven Krafchick, a medical and disability attorney, raised his considerable concerns for the legal and medical insurance ramifications of coding CFS under the “R codes” at the May CFSAC meeting [1]. 

Coding CFS under R53.82 for “non viral onset” cases will consign patients to a dustbin diagnosis that will continue to confuse and conflate Chronic fatigue syndrome with Chronic fatigue. There are no certainties that clinicians will code new cases using the unfamiliar G93.3 PVFS and ME codes or that existing CFS patients will get “upgraded” to G93.3 ME.

Coding CFS under R53.82 under ill defined conditions will make patients more vulnerable to the proposals of the APA’s DSM-5 “Somatic Symptom Disorders” Work Group.

Coding CFS under R53.82 will render ICD-10-CM out of line with at least four versions of ICD-10, including Canada’s ICD-10-CA, which has all three terms classified in the Tabular List under G93.3, and out of line with proposals for the forthcoming ICD-11, scheduled for implementation in 2015. The U.S. would be the only country with CFS coded in the R codes.




Have representations been made to the NCHS Committee?

Although representations around the coding of CFS for ICD-10-CM have been made to CDC over the years, no stakeholder representations at NCHS meetings are recorded.

At the May CFSAC meeting, Dr Jones informed the Committee that the ICD-CM process is a public process and that there is an opportunity to input into the update of ICD-9-CM and development of ICD-10-CM as part of that process, and to engage with the NCHS Committee via regularly scheduled public meetings. Dr Jones confirmed that NCHS has stated that there has been no public presence from the CFS community at these meetings.
It was established during the May meeting that the deadline for submitting representations for new inclusions or modifications to existing proposals for ICD-10-CM for tabling for discussion at the next NCHS Coordination and Maintenance Committee meeting would close on July 15, for a meeting scheduled for September 14. It was further noted this would be the last meeting before implementation of the partial code freeze and that this was therefore a time sensitive issue.
Committee members discussed the potential for a representative of CFSAC attending the September 14 ICD-9-CM Coordination and Maintenance Committee meeting if it were permissible for CFSAC to give public testimony to another advisory body; Dr Jones stated that she would check the rules. Medical attorney, Steven Krafchick, had been particularly keen to see this suggestion taken forward.


Coalition4ME/CFS initiative

In a Press Release dated September 12, 2011, the Coalition4ME/CFS, which comprises a number of US 501 (c)(3) registered ME and CFS organizations, announced that the Coalition had submitted a representation to NCHS in July.

The Coalition had set out its proposals and a rationale in a 48 page letter dated July 14 and had been successful in getting the issue of the proposed coding of CFS in ICD-10-CM placed on the agenda for the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee. 

Mary Dimmock and Marly Silverman attended the September meeting and presented the Coalition’s proposal and rationale to the NCHS. The NCHS presented an alternative suggestion to the current proposal for the coding of CFS in ICD-10-CM on which stakeholders may also wish to submit comment.

The Coalition4ME/CFS’s materials can be found here:



There are a quite a number of background documents on the Coalition’s site and you may want to start with the Coalition’s Summary and Overview document.

You’ll also find the Coalition’s Press Release, ICD FAQ, Coalition Proposal, ICD Presentation (PPT), ME-ICC Update, ICD Meeting Update, IACFS Conference info and an ICD Sample Letter (a template for submitting comment to NCHS in support of the Coalition’s proposals).


What is the Coalition4ME/CFS proposing?

The Coalition proposes that for ICD-10-CM, Chronic fatigue syndrome (currently coded as “Chronic fatigue syndrome NOS”) should be deleted from Chapter 18: R53.82 Malaise and fatigue and instead, classified within Chapter 6 Diseases of the nervous system under the parent class G93 Other diseases of brain, under the Title term G93.3 Postviral fatigue syndrome, under which code Benign myalgic encephalomyelitis is proposed to be classified.

 This would bring the US specific ICD-10-CM in line with international ICD-10 (in which CFS is indexed to G93.3) and ICD-10-CA (Canada), where all three terms are classsified within the ICD-10-CA Tabular List under G93.3.

This would reflect the CFSAC Committee’s Recommendation to HHS of May 2011 which had prompted the Coalition’s initiative.

This would bring ICD-10-CM in line with ICD-11, for which it is proposed that all three terms are classified in Chapter 6 Diseases of the nervous system.

I shall be setting out the various proposals in a forthcoming post.


September 14 Coordination and Maintenance Committee meeting

The CDC webpage for the development of ICD-10-CM is here: http://www.cdc.gov/nchs/icd/icd10cm.htm

The 2011 release for the draft ICD-10-CM is available from the page above under this section of the page. Note that although this release of ICD-10-CM is available for public viewing, the codes in ICD-10-CM are not currently valid for any purpose or use. The most recent update to the draft, the “2011 release of ICD-10-CM” replaces the December 2010 release.

The CDC webpage for the ICD-9-CM Coordination and Maintenance Committee remit, meeting schedules and meeting documentation is here: http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

The ICD-9-CM Coordination and Maintenance Committee is a Federal Committee; suggestions for new inclusions to ICD-9-CM and modifications to proposals for the forthcoming ICD-10-CM come from both the public and private sectors.  Interested parties and stakeholders are required to submit proposals for modification prior to a scheduled meeting.

These twice yearly meetings are held as public fora to discuss proposed modifications to ICD-9-CM and proposals for ICD-10-CM and a number of proposals and modifications around other diseases and disorders had been tabled for discussion on September 14, in addition to the issue of the coding of CFS in ICD-10-CM.

Meeting presentation

Mary Dimmock (who prepared the proposal) and Marly Silverman (PANDORA founder and Coalition4ME/CFS steering committee member) presented on behalf of the Coalition at the NCHS’s September 14 meeting.

At the meeting, the NCHS had presented an alternative suggestion to the current proposal for the coding of CFS in ICD-10-CM which suggested coding (B) ME and CFS under two separate sub codes (G93.31 and G93.32) under a revised G93.3 parent “G93.3 Postviral and other chronic fatigue syndromes” (a not entirely satisfactory suggestion that I shall set out in full in a forthcoming post). I shall be posting extracts from the two NCHS meeting Proposals and Summary documents where they relate to the issue of the coding of CFS in the next post, and you can download the entire documents from the links below.

You can download an Audio of the September 14 NCHS meeting here: http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[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 NCHS Committee’s Summary of the proceedings of this meeting can be downloaded here: Summary September 14, 2011. See Page 2.

The CDC site says, “Note: This document was re-posted, changes are on page 2, bullet 2, bolded.  If you downloaded the previous document you will need to download this updated document.”

The NCHS Committee’s Proposals document is here:  Proposals September 14, 2011. See Pages 10-11.

The CDC site says, “Note: This document was re-posted, if you downloaded the previous document you will need to download this updated document.”


What’s the deadline for comments and where do I send them?

The closing date for submitting comments to NCHS on the proposals is Friday, 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


Coming up…

In upcoming posts I’ll be setting out the various proposals and the NCHS’s suggestion, for ease of comparison, and a posting by Mary Schweitzer around ICD-10-CM.


Footnotes and related postings:

1] Minutes of May 10-11 2011 CFSAC meeting (Extract: Discussion of concerns re coding of CFS for ICD-10-CM)

2]  A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases CDC, 2001.

3] CFS orphaned in the “R” codes in US specific ICD-10-CM

4] Forthcoming US “Clinical Modification” ICD-10-CM (starts half way down page)

5] I have written to the CDC’s, Donna Pickett, to request that consideration is given to posting stand alone PDFs of the draft Tabular List and Index. (At the moment, these two documents require extraction or opening in situ from a 14 MB Zipped file which contains five PDFs, which include the ICD-10-CM Tabular List and the Alphabetical Index.)

To view or download the Tabular List and Alphabetical Index for the 2011 release of ICD-10-CM:

Go to: http://www.cdc.gov/nchs/icd/icd10cm.htm#10update

Heading: ICD-10-CM Files – 2011 release

Click on: ICD-10-CM PDF Format for which the URL is


Open or save this directory file:

12/20/2010 08:40AM    14,131,267    icd10_cm_pdf.zip

contains 5 PDF files, which include the Tabular List (7.8 MB) and the Alphabetical Index (4.7 MB) which can be viewed in situ or saved to hard drive.

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