2021 US ICD-10-CM change proposal: addition of code for ME/CFS

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).

Today, ME/CFS does not exist in the US ICD-10-CM. Instead, most US doctors assign the code for chronic fatigue syndrome which has the same code as the symptom of chronic fatigue. As a result, it is impossible to accurately track the mortality and morbidity of ME/CFS or its relationship to Long COVID. This affects not only the more than 1.5 million Americans with ME/CFS, but also the tsunami of Long COVID patients who could develop ME/CFS.

This proposal will be discussed at the upcoming meeting of the NCHS ICD-10-CM Maintenance Committee on September 14-15, 2021. Details on registration for this proposal will be shared when NCHS announces it. After the meeting, there will be an opportunity for public comment prior to a final decision by NCHS. If the proposal is accepted, the change would be implemented in October 2022.

Our partners in this proposal include the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Open Medicine Foundation, Solve M.E., Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, and Pandora Org.

Solve ME will be holding a webinar and listening session on September 2 at 1 PM EST to discuss the proposal and hear any concerns and answer questions. To register for the webinar, click the button below.
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Background
The World Health Organization publishes a standardized system called the International Classification of Diseases (ICD) to track diseases globally. The most recent version is ICD-11 but most countries use ICD-10. Both the ICD-10 and the ICD-11 classify ME and CFS in the neurological chapter under the lead term of “postviral fatigue syndrome.”

The US version of the ICD-10 is the ICD-10-CM and is used to code diseases in medical records. When ICD-10-CM was implemented in 2015, CFS was moved from the neurological chapter to the Signs and Symptoms chapter and given the same code as the symptom of “chronic fatigue, unspecified.” The term ME/CFS was never added so US doctors must choose either CFS or ME. They almost always choose CFS.

As a result, virtually all cases of ME/CFS in medical records have been dumped into the “chronic fatigue, unspecified” bucket. Using the same code for both ME/CFS and the symptom of “chronic fatigue, unspecified” makes it impossible to track the mortality and morbidity of ME/CFS separate from the symptom of nonspecific chronic fatigue. This impacts insurance reimbursement, generation of statistics on disease burden and outcomes, the medical perception of ME/CFS. And it makes it virtually impossible to identify ME/CFS cases in retrospective research using electronic health records, such as those being done for Long COVID.

Our Proposal:
Our submitted proposal recommends the following three changes to ICD-10-CM to address this problem:

  1. Expand the lead term, “postviral fatigue syndrome,” to “Postviral and related fatigue syndromes” to allow for non-viral triggers. ICD rules limit options for the new name as it needs to include the original name.
  2. Establish different codes for ME and PVFS since PVFS is always postviral and ME can be triggered by other causes. ME/CFS will use the same code as ME.
  3. Add the terms “myalgic encephalomyelitis/chronic fatigue syndrome” and “ME/CFS” as “inclusion” terms (essentially synonyms) of the term “myalgic encephalomyelitis”
The submitted proposal did not make recommendations regarding the term “chronic fatigue syndrome” because of the lack of consensus on earlier proposals on how this should be addressed.
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https://www.meaction.net/2021/08/23/meaction-6-me-orgs-call-for-cdc-to-change-how-it-tracks-me-cfs/
 
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Seven Significant Organizations Propose Critical Code Change To CDC's ICD-10, Addressing Catastrophic Lack Of ME/CFS Case Tracking In The U.S.
News provided by

Solve M.E.
Aug 23, 2021, 13:26 ET
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LOS ANGELES, Aug. 23, 2021 /PRNewswire/ -- It's estimated that approximately 2.5 million Americans currently suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), often a post-infection disease . Yet there's no way for those in the medical system to properly code and track the disease in the U.S., meaning critical data is lost forever.

This affects not only current cases of ME/CFS, but also millions of anticipated new cases of Long COVID following COVID-19 infections, many of whom are very similar to ME/CFS. The need for code correction has never been more urgent and now numerous organizations are asking the Centers for Disease Control (CDC) to do just that.
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https://www.prnewswire.com/news-rel...-mecfs-case-tracking-in-the-us-301360782.html
 
Please see my comments on this proposal submitted to ICD-10-CM supported by seven US orgs in the coding thread:

Updates on status of ICD-11 and changes to other classification and terminology systems


At the end of Post #478:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-24#post-367113


Post #479:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-24#post-367145


Post #480:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-24#post-367249


Post #481:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-25#post-367278


Post #484:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-25#post-368306


Post #485:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-25#post-368451


Post #487:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-25#post-372112


Post #489:

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-25#post-372175
 
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The Diagnosis codes agenda for this coming week's ICD-10-CM Coordination and Maintenance Committee Meeting has now been released.

Please see thread: Updates on status of ICD-11 and changes to other classification and terminology systems

https://www.s4me.info/threads/updat...-terminology-systems.3912/page-25#post-373852

for the Rationale for this proposal in the Full Agenda (Discussion Topic Packet) for the virtual meeting of the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee Meeting, this coming week, September 14-15, 2021.

I have posted five new posts, today, which include the text of the proposal Rationale; the proposed restructured hierarchy (set out in the format required by the C & M Committee); and transcribed by me, to more clearly show the structure, if these proposals were to be approved.
 
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The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID

"Please sign this petition to fix the coding problem making Americans with ME/CFS invisible.

If a tree falls in the forest, does it make a sound? And if an American develops ME/CFS, would the US disease mortality and morbidity tracking systems know about it? Philosophers make debate the first question but the answer to the second one is decidedly NO.

As far as US disease tracking systems are concerned, the 1 – 2.5 million Americans with ME/CFS are invisible. You can’t die of ME/CFS in the US. You won’t experience any morbidity (suffering, impairment) from ME/CFS. And you certainly won’t develop ME/CFS following an acute COVID-19 infection, in spite of the remarkable similarities noted by many researchers, including NIH’s Dr. Anthony Fauci."

http://occupyme.net/2021/09/16/the-...can-can-develop-me-cfs-including-after-covid/

The above is also reposted on David Tuller's blog here, https://www.virology.ws/2021/09/20/...ional-us-coding-system-for-me-cfs-and-me-cfs/
 
A reminder that if you are planning to submit feedback on the proposals of the 7 US orgs and the alternative proposals presented by NCHS*, the deadline for receipt of comments is November 15.

Comments on the diagnosis proposals presented at the September 14-15, 2021 ICD-10-CM Coordination and Maintenance Committee meeting should be sent to the following email address:

nchsicd10CM@cdc.gov


*https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf
Page 169



NCHS alternative proposals:

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