Solve M.E. and Six Other Organizations Tackle Catastrophic Lack of ME/CFS Case Tracking in the U.S.

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).

Read our press release here.

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 836,000 to 2.5 million Americans with ME/CFS but also the tsunami of Long Covid patients who could develop ME/CFS.

Our partners in this proposal include the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, #MEAction, Open Medicine Foundation, Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, and Pandora Org. 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 and the time slot for this proposal will be provided when available. 

We will be holding a webinar and listening session on September 2 at 10 AM PT / 1 PM ET to discuss the proposal and hear any concerns and answer questions. You can register in advance for this meeting at this link.

Details

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 that being done for Long COVID.

The 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.  Add separate subcodes for postviral fatigue syndrome and ME
  3.  Add the terms “myalgic encephalomyelitis/chronic fatigue syndrome” and “ME/CFS” as inclusions of ME

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.

For more information, see the FAQs at this link.

 

Register Today for Our ICD-10 Listening Session

Solve M.E. and our partner organizations will host a listening session dedicated to our ICD-10-CM proposal on September 2 at 10 AM PT / 1 PM ET. The session is open to all and will be attended by representatives of all seven organizations to facilitate open dialogue and build consensus for this new proposal.

Register for the listening session here.