According to the Summary document, the deadline for receipt of public comments on proposals submitted at this meeting is November 16, 2012. If there is any change to this date, I will update.
Comments on proposals presented at the ICD-9-CM Coordination and Maintenance Committee meeting should be sent to the following email address: nchsicd9CM@cdc.gov. See Page One of the Summary document for important information on submission of public comment.
Extract, Summary document
Chronic fatigue syndrome
Andreas Kogelnik, MD, representing the Coalition 4 ME/CFS, was available via telephone to address questions and clinical concerns.
Lori Chapo-Kroger, representing the Coalition 4 ME/CFS, expressed that many nations, and the World Health Organization, put CFS at G93 in ICD-10, and that this would include everyone but the U.S.
Mary Dimmock, representing the Coalition 4 ME/CFS, questioned why the change must wait until after 2014 when they feel that this is an error in the classification right now (and has been since 2001).
Dr. Kogelnik indicated that the term myalgic encephalomyelitis is used in Europe while the U.S. continues to use the term chronic fatigue syndrome, and that the Coalition 4 ME/CFS considers these two conditions (CFS and ME) to be the same. That is why they want both terms included in the same code.
Nelly Leon-Chisen, AHA, noted support for a need for a code for chronic fatigue syndrome distinct from chronic fatigue, unspecified. She indicated also that with the cause being unknown it is better that the classification not be locked into placing CFS as a viral code. Also, if there is no consensus for ME and CFS being the same then it makes sense to keep them as two separate codes. If research later develops that says they are the same then the data can be aggregated together. However, if the research does not show this, then you don’t have them lumped into one code that does not allow you to separate out one from the other.
Sue Bowman, AHIMA, questioned counting all CFS as following a virus infection. She expressed a need for clinical consensus on this condition. Also, she stated that she did not see a rationale for an early change (before 2014).
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Note: Dx Revision Watch has no connection with the Coalition 4 ME/CFS or with the development of any proposals submitted by this organization. The views and opinions expressed in Coalition 4 ME/CFS submissions to ICD-9-CM Coordination and Maintenance Committee meetings represent the views of the Coalition 4 ME/CFS and its representatives and not the views of Dx Revision Watch.
All enquiries about proposals submitted to CMS/CDC on behalf of the Coalition 4 ME/CFS should be addressed directly to the Coalition 4 ME/CFS.
Note also that the proposal from the Coalition 4 ME/CFS (Option 1) and the alternative proposal presented by CMS/CDC (Option 2) at the September meeting are set out in accordance with the requirements of the ICD-9-CM Coordination and Maintenance Committee for the submission of proposals.
Note: I have no connection with the Coalition 4 ME/CFS or with the development of any proposals submitted by this organization. All enquiries about the proposal submitted to CMS/CDC on behalf of the Coalition 4 ME/CFS should be addressed directly to the Coalition 4 ME/CFS.
Note also that the proposal from the Coalition 4 ME/CFS and the alternative proposal from CMS/CDC are set out in accordance with the requirements of the ICD-9-CM C & M Committee for the submission of proposals.
+++
Coding of CFS in the forthcoming US specific ICD-10-CM
At the ICD-9-CM Coordination and Maintenance Committee’s September 14, 2011 meeting, a presentation had been made on behalf of the Coalition 4 ME/CFS in relation to the formal submission of a proposal.
The proposal requested that consideration be given to moving the classification of Chronic fatigue syndrome from its current proposed location within the ICD-10-CM R code chapter (Chapter 18: Symptoms and signs) to the G code chapter (Chapter 6: Diseases of the nervous system).
This would bring the chapter location of Chronic fatigue syndrome in ICD-10-CM in line with the international version of ICD-10, the Canadian ICD-10-CA and proposals for the forthcoming ICD-11.
No NCHS decision reached in response to the September 2011 proposals and the public comments received in respect of these proposals was conveyed following closure of the public comment period, last November.
However, further discussion of Chronic fatigue syndrome and two additional proposals are tabled on the agenda for discussion at the September 19, meeting, tomorrow.
I am appending the relevant extract from the Diagnosis Agenda and Proposals document which was published on the CDC website overnight. An official audio and a Summary of the meeting should be available in due course on the CDC website. I will update with these when available.
A proposal, submitted by the Coalition 4 ME/CFS, to modify codes for chronic fatigue syndrome (CFS) was presented and discussed at the September 2011 ICD Coordination and Maintenance Committee meeting. The National Center for Health Statistics also presented an alternative proposal, Option 2. There were many comments from the audience, and there was general support for the NCHS-proposed Option 2, moving CFS from Chapter 18, Symptoms, signs and abnormal clinical findings, not elsewhere classified, to Chapter 6, Diseases of the Nervous System but retaining separate codes for CFS and myalgic encephalomyelitis (ME). The rationale for retaining separate codes included agreement on the importance of being able to extract data on the two conditions separately or combine, as needed. It was also noted that term ME is not seen in medical record documentation. Written comments received on this issue were inconclusive. There was not agreement that the two conditions are the same. While some comments were from private citizens, others were from advocacy organizations and associations that represent health care providers and other large constituencies that use the classification. The public comment period following the meeting is not meant as a poll or survey. Analysis of public comment focused on the substance of the comments; whether there was a clear scientific consensus regarding the etiology and manifestations of the condition; and an understanding of the classification, its structure and conventions, and its uses by the health care industry.
As noted in the information from the September 2011 presentation, 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 spectrum of illnesses resulting from multiple possible pathways. Conditions that have been proposed to trigger the development of CFS include infections, trauma, immune dysfunction, stress, and exposure to toxins. Research in this area is ongoing.
There are several case definitions currently in use, some separating CFS from ME, and others merging the two conditions. The most widely used are the 1994 case definition (http://www.cdc.gov/cfs/case-definition/index.html ), the Canadian and the Oxford definitions. A new case definition for ME was published in the 2011 international consensus criteria that emphasized recent research and clinical experience that strongly point to widespread inflammation and multisystem symptoms and neuropathology. This new definition, which considers ME and CFS as synonymous terms, however, has not been widely vetted by the health care community at large. While there is no consensus on one case definition, there is consensus that this is a serious and complex syndrome, and it is likely that there are multiple subgroups. It has been noted that some providers use the terms interchangeably while others consider one condition a subgroup of the other. There is also some overlap with fibromyalgia and CFS/ME could be considered one of the multiple chronic overlapping pain conditions.
References
1. Fukuda et al. Ann Intern Med (1994) 121:953-959
(http://www.cdc.gov/cfs/case-definition/1994.html )
2. Holmes et al. Ann Intern Med (1988) 108:387-389.
3. Sharpe et al. J Roy Soc Med (1991) 84:118-121
4. Carruthers et al. J CFS (2003) 11:7-97
5. Carruthers et al.. J Intern Med (2011) 270: 327-38.
The Coalition 4 ME/CFS has stated that they do not support Option 2 proposed in September 2011 and have submitted a revised proposal. A revised Option 2 is also being proposed, consistent with comments received supporting Option 2 as noted above. The Coalition is also requesting that their proposal be considered for implementation prior to October 1, 2014 even though the condition is not a new disease and therefore does not meet the criteria for implementation during the partial freeze.
Based on the above, the following proposals for consideration are:
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For comparison, the proposal that had been presented by CDC at the September 2011 meeting in counterpoint to an earlier proposal presented by the Coalition 4 ME/CFS at that same meeting was this:
• Instead of Title term G93.3 Postviral and other chronic fatigue syndromes (CDC Option 2, September 2011)
CDC suggests retaining the Title term G93.3 Postviral fatigue syndrome (CDC Option 2, September 2012).
A Notice by the Centers for Disease Control and Prevention
Notice of Meeting of the ICD-9-CM Coordination and Maintenance Committee
The National Center for Health Statistics (NCHS), Classifications and Public Health Data Standards Staff announces the following meeting:
Name: ICD-9-CM Coordination and Maintenance (C&M) Committee meeting.
Time and Date: 9 a.m.-5 p.m., September 19, 2012.
Place: Centers for Medicare and Medicaid Services (CMS) Auditorium, 7500 Security Boulevard, Baltimore, Maryland 21244.
Status: Open to the public, limited only by the space available. The meeting room accommodates approximately 240 people.
Security Considerations: Due to increased security requirements CMS has instituted stringent procedures for entrance into the building by non-government employees. Attendees will need to present valid government-issued picture identification, and sign-in at the security desk upon entering the building. Attendees who wish to attend a specific ICD-9-CM C&M meeting on September 19, 2012, must submit their name and organization by September 10, 2012, for inclusion on the visitor list. This visitor list will be maintained at the front desk of the CMS building and used by the guards to admit visitors to the meeting.
Participants who attended previous ICD-9-CM C&M meetings will no longer be automatically added to the visitor list. You must request inclusion of your name prior to each meeting you attend.
Please contact Mady Hue (410-786-4510 or Marilu.hue@cms.hhs.gov ), for questions about the registration process.
Matters To Be Discussed: Tentative agenda items include: September 19, 2012.
ICD-10 Topics:
ICD-10 Implementation Announcements
Expansion of Thoracic Aorta Body Part Under Heart and Great Vessels System
Addendum Issues (Temporary Therapeutic Endovascular Occlusion of Vessel, changing body part from thoracic aorta to abdominal aorta)
ICD-10MS-DRGs
ICD-10HAC Translations
ICD-10MCE Translations
ICD-10-CM Diagnosis Topics:
Age related macular degeneration
Bilateral mononeuropathy
Bilateral option for cerebrovascular codes
Chronic Fatigue Syndrome
Complications of urinary devices
Diabetic macular edema
Food Protein Induced Enterocolitis Syndrome (FPIES)
Maternal care for previous Cesarean section/previous uterine incision
Metatarsus varus (congenital metatarsus adductus)
Microscopic colitis
Mid-cervical region and coding of spinal cord injuries
Multifocal motor neuropathy
Parity to supervision of pregnancy codes
Proliferative diabetic retinopathy
Retinal vascular occlusions
Salter Harris fractures
Sesamoiditis
Shin splints
Spontaneous rupture/disruption of tendon
Agenda items are subject to change as priorities dictate.
Contact Persons for Additional Information: Donna Pickett, Medical Systems Administrator, Classifications and Public Health Data Standards Staff, NCHS, 3311 Toledo Road, Room 2337, Hyattsville, Maryland 20782, email dfp4@cdc.gov :, telephone 301-458-4434 (diagnosis); Mady Hue, Health Insurance Specialist, Division of Acute Care, CMS, 7500 Security Boulevard, Baltimore, Maryland 21244, email marilu.hue@cms.hhs.gov , telephone 410-786-4510 (procedures).
The Director, Management Analysis and Services Office, has been delegated the authority to sign Federal Register notices pertaining to announcements of meetings and other committee management activities, for both the Centers for Disease Control and Prevention, and the Agency for Toxic Substances and Disease Registry.
Dated: August 9, 2012.
Catherine Ramadei,
Acting Director, Management Analysis and Services Office, Centers for Disease Control and Prevention.
[FR Doc. 2012-20019 Filed 8-14-12; 8:45 am]
BILLING CODE 4160-18-P
(c) 2012 US Federal Register
+++ Related posts:
At the ICD-9-CM Coordination and Maintenance Committee’s September 14, 2011 meeting, a presentation was made on behalf of the Coalition 4 ME/CFS in relation to the formal submission of a proposal that consideration be given to moving the classification of Chronic fatigue syndrome from its current proposed location within the ICD-10-CM R code chapter (Chapter 18: Symptoms and signs) to the G code chapter (Chapter 6: Diseases of the nervous system).
This would bring chapter location and parent class coding of Chronic fatigue syndrome in line with the international version of ICD-10, published in 1990, the Canadian ICD-10-CA and proposals for the forthcoming ICD-11.
No decision in response to the proposal, meeting discussions and public comment received has been conveyed following closure of the public comment period. Further discussion of Chronic fatigue syndrome has been tabled on the tentative agenda for the September 19, 2012 meeting.
I will post Summary documents and other relevant meeting materials as these become available. There are three posts on Dx Revision Watch that relate to and report on the presentation at the September 14, 2011 meeting:
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:
• factors affecting access and care for persons with CFS; • the science and definition of CFS; and • broader public health, clinical, research and educational issues related to CFS.
Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.
Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.
The Agenda item with the most relevance for this site was the issue of the current proposals for chapter placement and coding for Chronic fatigue syndrome in the forthcoming US specific ICD-10-CM, the proposals presented for consideration at the September meeting of the ICD-9-CM Coordination and Maintenance Committee on behalf of the Coalition for ME/CFS, and an alternative proposal presented by NCHS.
See this Dx Revision Watch post (Post #118, December 27, 2011) for a report on the Fall 2012 Meeting presentation by Donna Pickett (NCHS) and discussions of proposals for ICD-10-CM:
International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)
Recommendations out of the Fall 2011 CFSAC Meeting
The specific recommendations articulated by the Committee are:
1. This recommendation addresses the process by which CFSAC transmits recommendations to the Secretary and the Secretary communicates back to CFSAC whether or not a recommendation was acted upon. CFSAC recommends that this process be transparent and clearly articulated to include regular feedback on the status of the committee’s recommendations. This communication could originate directly from the Office of the Secretary or be transmitted via the relevant agency or agencies.
2. CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
3. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort.
4. This multi‐part recommendation pertains to classification of CFS in ICD classification systems:
a) CFSAC considers CFS to be a multi‐system disease and rejects any proposal to classify CFS as a psychiatric condition in the U.S. disease classification systems.
b) CFSAC rejects the current classification of CFS in Chapter 18 of ICD‐9‐CM under R53.82, chronic fatigue unspecified, chronic fatigue syndrome, not otherwise specified.
c) CFSAC continues to recommend that CFS should be classified in ICD‐10‐CM in Chapter 6 under Diseases of the Nervous System at G93.3 in line with ICD‐10, the World Health Organization, and ICD‐10‐CA, the Canadian Clinical Modification and in accordance with CFSAC’s recommendations of August 2005 and May 2011. CFSAC rejects CDC’s National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as myalgic encephalomyelitis because CFS includes both viral and non‐viral triggers.
d) CFSAC recommends that an “excludes one” [sic *] be added to G93.3 for chronic fatigue, R53.82, and neurasthenia, F48.8. CFSAC recommends that these changes be made in ICD‐10‐CM prior to its rollout in 2013.
This final recommendation was also provided to the National Center for Statistics at the CDC prior to the November 18, 2011 deadline for comments along with the following rationale:
We feel that the interests of patients, the scientific and medical communities, continuity and logic are best served by keeping CFS, (B)ME (Benign Myalgic Encephalomyelitis) and PVFS (Post Viral Fatigue Syndrome) in the same broad grouping category. Current scientific evidence would indicate there are more similarities between the three entities than there are differences. Whether they are synonyms for the same underlying concept, disease entities and sub‐entities, or merely the best coding guess is unclear. In reality, any or all of the above may be correct. While the relationship between CFS, B(ME) and PVFS is not stated, that they are grouped together in ICD 10 (WHO) would indicate some rationale for a connection. Our understanding is that this association will be maintained in the ICD 11, which may also include further description of the relationship. Exclusions specific to chronic fatigue (a symptom present in many illnesses) and neurasthenia (not a current diagnosis) also seem to be under consideration for ICD 11.
*Ed: Should be “Excludes1”. For definitions for “Excludes1” and “Excludes2” see Post #118
The Minute for Ms Pickett’s presentation “International Classification of Diseases—Clinical Modification (ICD‐CM) Donna Pickett, National Center for Health Statistics (NCHS/Centers for Disease Control and Prevention)” and Committee discussions in response to that presentation can be found on Pages 4-10 of the PDF for Minutes Day One (November 8, 2011).
Video of presentation in Post #118. Ms Pickett’s presentation slides here in PDF format.
The Minute for the proposal and unanimous approval of a revised and expanded Recommendation to HHS on the coding of CFS in ICD-10-CM can be found on Pages 43-44 of the PDF for Minutes Day Two (November 9, 2011). Video in Post #118.
As reported in Post #118, following the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee, NCHS had invited comments from stakeholders on the proposals in Option 1 (presented by the Coalition for ME/CFS) and Option 2 (alternative proposals by NCHS).
The closing date for comments was November 18, 2011.
A decision was expected before the end of December but since any decision that might have been reached on these proposals has yet to be announced, I have raised some queries with Ms Pickett around the decision making process (see Post #118). I will update when a response has been received from Ms Pickett’s office or a public announcement made.
International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS), November 27, 2011
CFSAC November 2011 meeting: videos, presentations and Day One Agenda item:
International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).
The two day fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on Tuesday, November 8 and Wednesday, November 9, 2011 at a new venue – the Holiday Inn Capitol, Columbia Room, 550 C Street, SW, Washington, DC.
No live video streaming
In May 2009, a precedent was set for the entire proceedings of CFSAC meetings to be streamed as real-time video with videocasts and auto subtitling posted online a few days after the meetings have closed.
Prior to the November meeting, CFSAC Committee Support Team had clarified that the commitment to providing real-time video streaming could not be met (later said to be due to budgetary constraints) and that a phone link would be provided instead – an option not available to those of us outside the US – and that a high quality video of the two day proceedings would be posted within a week. In the event, videos for Day One and Day Two of the meeting were not posted within this timeframe.
International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)
The Agenda items that have the most relevance for Dx Revision Watch site are the presentation on Day One by Donna Pickett (NCHS) and the Committee’s formulation on Day Two of a revised CFSAC Recommendation to HHS on the coding of CFS in the forthcoming ICD-10-CM.
The video for that section of the meeting wasn’t published on YouTube until November 17, just one day prior to the closing date for submission of comments on the proposals for the coding of CFS in ICD-10-CM put forward by the Coalition4ME/CFS for NCHS consideration and an alternative option presented by NCHS at the September 14, 2011 meeting of the ICD-9-CM Coordination and Maintenance Committee [1].
This meant that many of those compiling comment for submission before the November 18 deadline who had not attended the CFSAC meeting in person were unable to use Ms Pickett’s presentation to inform their submissions as they were not aware that the videos for Day One had been published or would have already submitted their comments.
Ms Pickett’s presentation slides can be viewed here in PDF format:PowerPoint Slides
The video of Ms Pickett’s presentation can be viewed below or on YouTube:
Uploaded by WomensHealthgov on 17 Nov 2011 Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, November 8, 2011. 9am to 11:15am. Opening Remarks, International Classification of Diseases-Clinical Modification (ICD-CM), and Public
During her presentation, Ms Pickett had outlined the two proposals under consideration (Option 1 and Option 2) but the slide for the NCHS’s suggestion (Option 2) omits the suggested Excludes.
Note also that the presentation slides did not set out that NCHS has suggested the inclusion term “Chronic fatigue syndrome NOS” under a suggested subcode, “G93.32 Chronic fatigue syndrome”.
I consider Option 2 (NCHS) to be problematic for a number of reasons and I was unable to support the NCHS’s suggestion. I could not support:
• the suggested revision of the existing ICD Title term “G93.3 Postviral fatigue syndrome” to “G93.3 Postviral and other chronic fatigue syndromes”;
• the inclusion of term “Chronic fatigue syndrome NOS” included under “G93.32 Chronic fatigue syndrome”;
• the specification of class 2 exclusions, that is, “Excludes2” rather than “Excludes1”.
If consideration were being given to the creation of separate subcodes or child categories to a revised parent G93.3 class, then I would prefer to see three discrete subcodes under G93.3, one for each term, in the order: G93.31 Postviral fatigue syndrome; G93.32 Myalgic encephalomyelitis (Benign);G93.33 Chronic fatigue syndrome under an alternative term to the suggested parent term, “G93.3 Postviral and other chronic fatigue syndromes”.
Given that I consider NCHS Option 2 to be problematic and given that no alternatives appear to be currently under consideration by NCHS, I submitted a comment supporting Option 1 (Coalition4ME/CFS), with two caveats:
a) That any excludes specified are Excludes1 not Excludes2
b) That consideration is given by NCHS to specifying two exclusion terms beneath G93.3
I have reviewed the September ICD-9-CM Coordination and Maintenance Committee meeting audio [5] and do not consider there had been adequate discussion at the meeting of the implications for the inclusion of a “Chronic fatigue syndrome NOS (Not Otherwise Specified)” coded to a suggested subcode “G93.32 Chronic fatigue syndrome”.
The implications for this suggestion do not appear to have been discussed publicly at the November CFSAC meeting nor were the potential implications for the use of “Excludes2” class excludes raised during public discussion.
New CFSAC November 2011 Meeting Recommendation
The Minutes for the November CFSAC meeting and the approved Recommendations formulated at that meeting are not yet published on the CFSAC site. [Update @ March 27, 2012: Minutes are available here ]
At the May 2011 meeting, following discussion of the ICD-10-CM CFS coding issue and concerns for the current proposals of the DSM-5 Somatic Symptom Disorders work group, the following Recommendation had been proposed by Dr Lenny Jason and voted unanimously in favour of by CFSAC committee:
CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS.
CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005.
CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)
Following committee discussions at the November meeting, this May 2011 Recommendation was reviewed and expanded on to reflect the developments at the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee and CFSAC committee’s views on the two Options that have been proposed and are under consideration.
CFSAC committee member and disability attorney, Steven Krafchick, read out a motion for a new Recommendation which was proposed and voted unanimously in favour of:
The CFSAC November 2011 Recommendation:
CFSAC considers CFS to be a multi-system disease and rejects any proposal to classify CFS as a psychiatric condition in the US disease classification systems.
CFSAC rejects the current classification of CFS in Chapter 18 of ICD-10-CM under R53.82 – chronic fatigue, unspecified > chronic fatigue syndrome Not Otherwise Specified.
CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “Diseases of the nervous system” at G93.3, in line with ICD-10 (the World Health Organization) and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005 and May 2011.
CFSAC rejects the National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as [benign] myalgic encephalomyelitis because CFS includes both viral and non-viral triggers.
CFSAC recommends that an “Excludes1” be added to G93.3 for chronic fatigue – R53.82 and neurasthenia – F48.0.* CFSAC recommends that these changes be made in ICD-10-CM prior to its roll out in 2013.
*Ed: Note: CFSAC committee has been advised that the discrete code for Neurasthenia in ICD-10-CM Chapter 5 is F48.8 not F48.0, as had been read out at the meeting. I am informed that the new Recommendation is being amended.
Watch a video clip for the Recommendation, here:
Uploaded by coalition4mecfs on 17 Nov 2011 CFSAC Committee Recommendation on the ICD-10 -11/9/2011
Watch discussion of Recommendation and vote here:[1 hr 12 mins from start]
Uploaded by WomensHealthgov on 18 Nov 2011 Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 2, November 9, 2011. 1:30pm to 4:30pm. Public Comment and Committee Discussion to Finalize Recommendations
Request for clarification
During her presentation to CFSAC, in response to a query from the floor, Ms Pickett had clarified that the comments being received by NCHS were not being reviewed until after the closing date for submissions (November 18) and that a decision about the proposals would be made in December. At the time of publication, no decision has been made public and it is not known whether any decision has been arrived at.
On December 18, I emailed Ms Pickett and asked if she could advise me by what date a decision is expected to have been made following review and consideration of the comments on proposals for the coding and chapter placement of Chronic fatigue syndrome for ICD-10-CM that were received by her office between September 14 and November 18.
On the CDC website it states that:
“The ICD-9-CM Coordination and Maintenance Committee’s role is advisory. All final decisions are made by the Director of NCHS and the Administrator of CMS. Final decisions are made at the end of the year and become effective October 1 of the following year.”
I also asked Ms Pickett if she would clarify if this meant that any decision arrived at by the Coordination and Maintenance Committee is advisory only and whether a final decision would be made by the Director of NCHS and Administrator of CMS; if this is the case, by what date would their decision expect to be made and by what means would a decision be made public.
I will update when I have a response from Ms Pickett and/or when any decision has been reached and announced.
See this CFSAC page for list of Public Testimony and PDFs of testimonies for
Day One: Tuesday, November 8, 2011 Day Two: Wednesday, November 9, 2011
See this CFSAC page for PDFs of Written Testimony Received Prior to the Meeting Date.
Marly Silverman’s Public Testimony on behalf of the Coalition4ME/CFS on the issue of the proposed coding of CFS in the forthcoming US specific ICD-10-CM:
The Coalition4ME/CFS had submitted a proposal to NCHS, prior to the September meeting, requesting that Chronic fatigue syndrome be deleted as an inclusion term under code R53.82 Other malaise and fatigue (Chapter 18 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified) and that the term be added as an inclusion term under code G93.3 Postviral fatigue syndrome (Chapter 6 Disorders of the nervous system).
The Coalition 4 ME/CFS had also requested that their proposal be considered for October 1, 2012 so that the change occurs prior to the October 1, 2013 implementation date of ICD-10-CM even though the condition is not a new disease.
Ed: Note: Option 1 (Proposal by the Coalition4ME/CFS) does not display the term Benign myalgic encephalomyelitis under G93.3 Postviral fatigue syndrome. This is because no change to the placement of this term was being requested by the Coalition4ME/CFS, that is, there was no proposal to Add, Delete or Revise the term Benign myalgic encephalomyelitis other than a request that consideration be given to placing the ICD-10 descriptor “Benign” at the end of the term, as “Myalgic encephalomyelitis (Benign)”.
Ed: Note: At the September 14, 2011 ICD-9-CM Coordination and Maintenance Committee meeting, there had been some brief discussion of whether class 1 excludes (Excludes1) were more appropriate than class 2 excludes (Excludes2). Clarification of the difference between the terms follows:
The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.
Excludes1
A type 1 Excludes note is a pure excludes. It means “NOT CODED HERE!” An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is for used for when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.
Excludes2
A type 2 excludes note represents “Not included here”. An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together.
[Note this audio downloads as a large Zipped file. The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]
On July 15, the Coalition 4 ME/CFS submitted a written proposal to the ICD-9-CM Coordination and Maintenance Committee to restore CFS to Chapter 6 “Diseases of the Nervous System” code G93.3 in the ICD-10 Clinical Modification (ICD-10-CM) in the US.
This action follows the September 2004, August 2005 and May 2011 recommendations of the federally-appointed Chronic Fatigue Syndrome Advisory Committee (CFSAC). In each case, the committee recommended that CFS be in the neurological classification in the ICD-10-CM, in line with the rest of the world.
On September 14, the Coalition 4 ME/CFS made an oral presentation to the committee and responded to concerns expressed by audience members.
The coalition has written a letter to clinicians, researchers and other medical professionals outlining the National Center for Health Statistics (NCHS) and the coalition option for modification
We have also included a sample letter for medical professionals and the public to give input rejecting NCHS’s option #2 in favor of the coalition’s proposal option
We are asking medical professionals to comment on this important issue before the comment period ends on November 18.
Medical professionals wanting to add their signature to the coalition’s prepared letter to NCHS that will be submitted prior to the November 18 deadline can contact Mike Munoz at info@coalition4MECFS.org
More information concerning the coalition and the ICD initiative can be found at
Comments on proposals need to be submitted by November 18.
Comments from stakeholders, preferably via email, should be submitted to:
Donna Pickett RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics – CDC
3311Toledo Road Hyattsville, MD 20782
Via email: nchsicd9CM@cdc.gov
You can download an Audio of the September 14 NCHS meeting here:
[Note this is a large Zipped file. The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]
Summary September 19 2012 
dx revision watch 