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.]

CFSAC November Meeting Agenda and Call-in Information

CFSAC November Meeting Agenda and Call-in Information

Post #111 Shortlink: http://wp.me/pKrrB-1mG

CFSAC Meetings Page: http://www.hhs.gov/advcomcfs/meetings/index.html

CFSAC November meeting Call-in Information

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_callininfo.html

CFSAC Fall 2011 Meeting (November 8-9)
Audio Call-In Information

The Meeting of the Chronic Fatigue Advisory Committee will be available via AUDIO Lines. The following call-in information will provide access to the meeting via audio lines:

Please dial the participant dial-in number:
Participant Dial-In Number: (866) 395-4129

Please use the following passcodes for each day:
Passcodes:

Tuesday, November 8: 24756185
Wednesday, November 9: 24759937

Please note, each caller can press *0 at any time during the call tocontact the operator for support.

There will be an operator on the line to welcome you and each caller will be asked their name and email address (this is not a requirement). You will be placed into the conference.

During the lunch hour, callers may hold the line or choose to call back to access the conference.

The CFSAC meeting will begin from 9:00 am – 5:30 pm Tuesday, November 8 and 9:00 am – 4:30 pm on Wednesday, November 9.

November 8-9 2011 Meeting Agenda

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_agenda.html

CFSAC Fall 2011 Meeting (November 8-9)

Day One

Agenda – CFSAC Fall 2011 Meeting
November 8, 2011

9:00 am Call to Order
Opening Remarks
Christopher R. Snell Chair, CFSAC

Roll Call, Housekeeping
Nancy C. Lee, M.D., Designated Federal Officer

9:10 am International Classification of Diseases-Clinical Modification (ICD-CM)
Donna Pickett, RHIA, MPH, National Center for Health Statistics

10:00 am Public Comment Public

11:15 am Break

11:30 am Welcome Statement from the Assistant Secretary for Health Howard K. Koh, M.D., Ph.D

12:00 pm Agency Updates: AHRQ, CMS, FDA, HRSA
Ex Officio Members

1:00 pm Subcommittee Lunch Subcommittee Members

2:00 pm Public Comment Public

2:45 pm Break

3:00 pm Future Interdisciplinary Research for CFS Utilizing a Variety of Scientific Disciplines, Gailen Marshall, M.D., Ph.D.
Committee Discussion

4:00 pm Committee Discussion

Past CFSAC Recommendations Committee Members

5:00 pm Adjourn

Day Two

Agenda – CFSAC Fall 2011 Meeting
November 9, 2011

9:00 am Call to Order
Opening Remarks
Christopher R. Snell, Chair, CFSAC

Roll Call, Housekeeping
Nancy C. Lee, M.D., Designated Federal Officer

9:15 am HHS Office on Disability
Rosaly Correa-de-Araujo, M.D, M.Sc., Ph.D, Deputy Director, HHS Office on Disability

10:00 am Centers for Disease Control and Prevention Webpage
Eileen Holderman
Nancy G. Klimas, M.D.
Ermias Belay, M.D.

10:30 am Break

10:45 am Agency Updates: CDC, SSA, NIH
Ex Officio Members

11:45 am Minimal Elements for Papers
Leonard A. Jason, Ph.D.

12:15 pm Subcommittee Lunch
Subcommittee Members

1:15 pm Public Comment
Public

2:15 pm Break

2:30 pm Committee Discussion

Finalize Recommendations Committee Members

4:30 pm Adjourn

[ENDS]

Related information and posts:

1] Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative: http://wp.me/pKrrB-1hd

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

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

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

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

Coalition 4 ME/CFS – Letter to the Medical Community

Coalition 4 ME/CFS – Letter to the Medical Community

Post #109 Shortlink: http://wp.me/pKrrB-1kN

From Mike Munoz, via Co-Cure | October 25, 2011

On July 15, the Coalition 4 ME/CFS submitted a written proposal to the ICD-9-CM Coordination and Maintenance Committee to restore CFS to Chapter 6 “Diseases of the Nervous System” code G93.3 in the ICD-10 Clinical Modification (ICD-10-CM) in the US.

This action follows the September 2004, August 2005 and May 2011 recommendations of the federally-appointed Chronic Fatigue Syndrome Advisory Committee (CFSAC). In each case, the committee recommended that CFS be in the neurological classification in the ICD-10-CM, in line with the rest of the world.

On September 14, the Coalition 4 ME/CFS made an oral presentation to the committee and responded to concerns expressed by audience members.

The coalition has written a letter to clinicians, researchers and other medical professionals outlining the National Center for Health Statistics (NCHS) and the coalition option for modification

PDF: Coalition for ME/CFS Letter to the Medical Community

We have also included a sample letter for medical professionals and the public to give input rejecting NCHS’s option #2 in favor of the coalition’s proposal option

Html: Coalition for ME/CFS Sample Letter

We are asking medical professionals to comment on this important issue before the comment period ends on November 18.

Medical professionals wanting to add their signature to the coalition’s prepared letter to NCHS that will be submitted prior to the November 18 deadline can contact Mike Munoz at info@coalition4MECFS.org

More information concerning the coalition and the ICD initiative can be found at

http://coalition4mecfs.org/ICD-Home.html

Website: http://coalition4mecfs.org/

Facebook: https://www.facebook.com/home.php#!/pages/Coalition-4-ME-CFS/126612960745896

Twitter: https://twitter.com/#!/Coalition4MECFS

Contact: info@coalition4MECFS.org

The PDF of the Letter to the Medical Community can also be downloaded from Dx Revision Watch here: Coalition 4 ME/CFS Letter to Medical Community

 

Related material:

Comments on proposals need to be submitted by November 18.

Comments from stakeholders, preferably via email, should be submitted to:

Donna Pickett RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics – CDC
3311Toledo Road Hyattsville, MD 20782
Via email: nchsicd9CM@cdc.gov

You can download an Audio of the September 14 NCHS meeting here:

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.]

 

1] Full NCHS meeting Proposals document:

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

2] Full NCHS meeting Summary document:

http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

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)

Medical Classification WHO ICD codes by Mary Schweitzer

Medical Classification WHO ICD codes by Mary Schweitzter

Post #105 Shortlink: http://wp.me/pKrrB-1j9

Mary Schweitzer

October 14, 2011

There has of late been speculation that it would be bad for U.S. patients if CFS and M.E. were placed in the same category in the neurology chapter of ICD-10-CM, the “clinical manual” of ICD-10 that will be adopted for use in the United States.

But the fact of the matter is that in ICD-10, CFS already IS coded to G93.3, “PVFS and M.E.” in the index, which is as authoritative as the tabular version. [PVFS stands for Post-Viral Fatigue Syndrome, and is not diagnosed very frequently any more – not at all in the U.S.]. It already IS coded in neurology.

110 nations use ICD-10 as-is, including the UK. Australia has a clinical version that does not alter the codes for M.E. or CFS. But Canada and Germany have clinical versions that place CFS in the tabular version of ICD-10, in G93.3 with M.E. In fact, it was the Canadian clinical version, ICD-10-CA, which led to the highly regarded Canadian Consensus Criteria for ME/CFS in 2003.

NOBODY EXCEPT THE UNITED STATES CODES CFS IN THE “R” CHAPTER. If we coded CFS at R53.82, which was the plan of NCHS, we would have been the ONLY nation in the world to do so.

Furthermore, M.E. is not a known diagnosis in the U.S. (WE know about it, but very few doctors do.) There is no definition for it approved by CDC. We can now point to the new definition that was published in the Journal of Internal Medicine, but that is more likely to enable researchers in the US and Canada to use M.E. if they want to, than to trickle down to U.S. clinicians [1]. Part of the problem is that when M.E. replaced atypical polio as a disease name in British commonwealth nations and Europe, in the U.S. the new name was epidemic neuromyesthenia, which has not (to my knowledge) been diagnosed in decades.

So if CFS gets coded as R53.82 in the U.S.’s ICD-10-CM, yes, M.E. will be less likely to confuse with CFS – but that would only be in the U.S., and in the U.S. we only get diagnosed with that revolting name CFS anyway. At least we could get them scratching their heads and asking, “What is M.E.?” if both diseases were placed together where those of you outside the U.S. already have it.

Given that U.S. doctors do not have a high opinion of CFS, keeping it under “R” in “vague signs and symptoms” would only reinforce their prejudice against it as a “garbage diagnosis” – something you diagnose when you run out of ideas.

Finally, there was an inadvertent error in an earlier Co-Cure message about getting CFS out of the “R” category. The “R” category is not for psychiatric diagnoses.

British psychiatrists use “fatigue syndrome,” which is coded at F48.0 under neuroses at “neurasthenia.”. Then when they write about it, they mix and match terms so it looks as if CFS is the same thing, and therefore it goes in F48.0. That is a serious problem in the UK. [I have to admit to being alarmed recently when a U.S. virologist connected CFS not to the history of atypical polio, which is pretty well established, but to the arcane nineteenth century diagnosis of neurasthenia. Please don’t do that!]

We are not (I hope) in current danger of being coded under neuroses at F48.0, neurasthenia, in the U.S. But the “R” diagnosis is sufficiently vague that it wouldn’t be difficult to use it to claim CFS patients really have CSSD (Complex Somatic Symptom Disorder), the category British psychiatrist and CBT advocate Michael Sharpe is trying to shoehorn into DSM-5, the new version of the American Psychiatric Association’s huge diagnostic tome. So it does leave us vulnerable [2].

To those outside the U.S. I would say, look to ICD-11. That’s what will affect you the most. To those in the U.S. (where we are finally getting around to adopting ICD-10-CM two decades after ICD-10 was written), what WE need is simply to get in step with the rest of the world now.

Mary M. Schweitzer PhD

Related material

[1] New International Consensus Criteria for M.E., Journal of Internal Medicine

Volume 270, Issue 4, pages 327–338, October 2011

Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C. P., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., Marshall-Gradisbik, S., Mena, I., Mikovits, J. A., Miwa, K., Murovska, M., Pall, M. L. and Stevens, S. (2011), Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270: 327–338. doi: 10.1111/j.1365-2796.2011.02428.x

Abstract
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

Full text in html
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Full text in PDF
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

Or Open PDF here:  International ME Consensus Criteria

[2] DSM-5 Development: Somatic Symptom Disorders

http://www.dsm5.org/proposedrevision/Pages/SomaticSymptomDisorders.aspx

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

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

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:

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

2] Full NCHS meeting Summary document:

http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

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)

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

Extracts from Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

Post #103 Shortlink: http://wp.me/pKrrB-1iB

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.]

Extracts from Diagnosis Agenda

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

Page 8

Partial Code Freeze for ICD-9-CM and ICD-10

The ICD-9-CM Coordination and Maintenance Committee will implement a partial freeze of the ICD-9-CM and ICD-10 (ICD-10-CM and ICD-10-PCS) codes prior to the implementation of ICD-10 on October 1, 2013. There was considerable support for this partial freeze. The partial freeze will be implemented as follows:

• The last regular, annual updates to both ICD-9-CM and ICD-10 code sets will be made on October 1, 2011.
• On October 1, 2012, there will be only limited code updates to both the ICD-9-CM and ICD-10 code sets to capture new technologies and diseases as required by section 503(a) of Pub. L. 108-173.
• On October 1, 2013, there will be only limited code updates to ICD-10 code sets to capture new technologies and diagnoses as required by section 503(a) of Pub. L. 108-173. There will be no updates to ICD-9-CM, as it will no longer be used for reporting.
• On October 1, 2014, regular updates to ICD-10 will begin.

The ICD-9-CM Coordination and Maintenance Committee will continue to meet twice a year during the partial freeze. At these meetings, the public will be asked to comment on whether or not requests for new diagnosis or procedure codes should be created based on the criteria of the need to capture a new technology or disease. Any code requests that do not meet the criteria will be evaluated for implementation within ICD-10 on and after October 1, 2014 once the partial freeze has ended.

Codes discussed at the September 15 – 16, 2010 and March 9 – 10, 2011 ICD-9-CM Coordination and Maintenance Committee meeting will be considered for implementation on October 1, 2011, the last regular updates for ICD-9-CM and ICD-10. Code requests discussed at the September 14 – 15, 2011 and additional meetings during the freeze will be evaluated for either the limited updates to capture new technologies and diseases during the freeze period or for implementation to ICD-10 on October 1, 2014. The public will be actively involved in discussing the merits of any such requests during the period of the partial freeze.

Page 10 and 11

ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011

10 Chronic Fatigue Syndrome

According to the Coalition 4 ME/CFS, US researchers have estimated that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) strikes 1 to 4 million Americans. It is a devastating illness that is characterized by profound fatigue that is not improved by rest and is worsened by physical or mental activity, along with multi-system symptoms including pain, cognitive impairment, headaches, unrefreshing sleep and tender lymph nodes.

In ICD-9-CM, the code for Chronic Fatigue Syndrome (CFS) (780.71, Chronic Fatigue Syndrome) became effective October 1, 1998. The proposal to create a unique code was presented at the December 1997 ICD-9-CM Coordination and Maintenance meeting and was based on a number of requests that stated that a unique code was needed because it was impossible to collect meaningful data about the frequency of diagnosis as well as the utilization of medical services. Placement of CFS within Chapter 16 in ICD-9-CM at that time reflected that an underlying cause had not yet been determined.

The cause or causes of CFS remain unknown, despite a vigorous search. While a single cause for CFS may yet be identified, another possibility is that CFS represents a common endpoint of disease resulting from multiple causes. Conditions that have been proposed to trigger the development of CFS include infections, traumatic conditions, immune dysfunction, stress, and toxins.

Currently there are several case definitions in use, some separating CFS from myalgic encephalomyelitis (ME), and others merging the two conditions together. The most widely used are the 1994 case definition, the Canadian and the Oxford definitions. A new definition of ME has been recently published to emphasize recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology. While there is no consensus on case definition, there is consensus that this is a serious syndrome and complex syndrome, and it is likely that there are multiple subgroups. Changes in immune, CNS and autonomic nervous system can be identified, but no tests have sufficient sensitivity and specificity to serve as a diagnostic test for CFS.

ICD-10 was approved by the International Conference for the Tenth Revision of the International Classification of Diseases in 1989 and adopted by the 43rd World Health Assembly in 1990. In ICD-10 WHO created code G93.3, Postviral fatigue syndrome and indexed chronic fatigue syndrome to this code. 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.

The Coalition 4 ME/CFS has submitted a proposal asking that chronic fatigue syndrome be deleted as an inclusion term under code R53.82 and that the term be added as an inclusion term under code G93.3.

The Coalition 4 ME/CFS is also requesting 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.

Page 11

Ed: Note that 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 is being requested by the Coalition4ME/CFS, that is, no request to Add, Delete or Revise the term is being requested.

[Extract ends]

Ed: Note that discussion of whether class 1 excludes were more appropriate than class 2 excludes took place at the meeting.

ICD: Use of Excludes1 or Excludes2

https://www.cms.gov/ICD10/Downloads/6_I10tab2010.pdf

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.

Related material:

1] Full NCHS meeting Proposals document:

http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

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

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

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