Updated Coding of ME/CFS

 Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as far as US disease tracking systems are concerned. Americans don’t experience any morbidity (suffering, impairment) from ME/CFS. They can’t die with ME/CFS. Nobody develops ME/CFS following an acute COVID-19 infection-despite all the evidence that shows they can and do. AndME/CFS cases don’t show up in research using electronic health records. The reason? ME/CFS is effectively nonexistent simply because ME/CFS is not being coded in US health records. 

This coding problem is finally being fixed in the 2023 release of the ICD-10-CM, being implemented October1,2022. Going forward, Americans diagnosed with ME/CFS, including any new cases following COVID, will nolonger be invisible. 

The ICD-10-CM is the US version of the International Classification of Diseases used to track diseases globally. When the US implemented the ICD-10-CM in 2015, the term “chronic fatigue syndrome,” the term almost always used by US doctors for ME/CFS, was assigned the same ICD code as the symptom of “chronic fatigue, unspecified.” At the same time, the term “myalgic encephalomyelitis/chronic fatigue syndrome,” the name adopted by US federal agencies and in clinical guidance, was never added to the ICD-10-CM. 

As a result, virtually all US cases of ME/CFS have been effectively lost in a bucket of unspecified chronic fatigue due to any cause. This impacts tracking of ME/CFS disease mortality and morbidity and assessment of its disease burden and healthcare utilization and cost. It impacts insurance billing and reimbursement. And it also impacts research using electronic health records, including plans by NIH and CDC to undertake such research to understand Long COVID and its sequelae. More information on the coding issue and its impact is available here. 

This is a uniquely American problem as only the US has reclassified CFS in its ICD-10-CM to be equivalent to the symptom of chronic fatigue, unspecified. The World Health Organizationand other countries classify both CFSand ME together with postviral fatigue syndrome in the neurological chapter. 

To fix this coding problem in the ICD-10-CM, the term ME/CFS has been added andthe term “postviral fatiguesyndrome” expanded to “postviral and related fatigue syndromes” to account for non-viral infections and other causes. “Chronic fatigue syndrome” has been moved back to the neurological chapter and the term “systemic exertion intolerance disease” added because some US healthcare providers use this term. Importantly, a note has been added to also code post-COVID condition (U09.9 ) when ME/CFS is associated with COVID. The full set of ICD-10-CM changes for ME/CFS, CFS and postviral fatigue syndrome is summarized here. Note that this change impacts only newly created health records, not existing ones. Correcting existing records would be challenging as they have been coded coming led with the symptom of “chronic fatigue, unspecified. 

This update is the result of multiple proposals by the ME/CFS community since 2011, most recently in 2021 by seven ME/CFS organizations: #MEAction, Open Medicine Foundation, Solve ME/CFS Initiative, InternationalAssociation for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Massachusetts ME/CFS & FM Association, Pandora Org and Minnesota ME/CFS Alliance. Their proposal to add the term ME/CFS and expand post viral fatigue syndrome is available here. The additional changes recommended by the National Centers for Health Statistics, responsible for ICD-10-CM, can be seen here and in the final updates here.

If you have any questions or comments, please contactone of the above organizations orMary Dimmock atmaryedimmock@gmail.com.
 

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). 

Today, we are updating you on that proposal and asking that you sign this petition in support of our proposal.

At present , because of ICD-10-CM coding of ME/CFS in the US, it is impossible to track the mortality and morbidity of 1 to 2.5 million Americans with ME/CFS, or to identify ME/CFS cases using ICD codes in electronic health records. This is also a major barrier to any research in this disease, and an urgent issue, especially with the potential tsunami of new ME/CFS cases following COVID-19 infections.

Pandora Org submitted the first proposals in 2011 to fix this problem, and it was rejected. (We were the first Advocacy Organization to submit a proposal in the history of the NCHS.) Submissions in 2012, and 2018 were also rejected by the National Center of Health Statistics (NCHS) because of a lack of stakeholder consensus on how to resolve the problem. To move this forward, the 2021 proposal submitted by the organizations focused on the most basic changes - addition of the term ME/CFS and allowing for non-viral triggers. NCHS has since added additional coding changes, some of which were already rejected in those earlier proposals because of the lack of consensus. Further details on the organizations’ proposal and NCHS’ coding recommendations are below.

We appreciate that you may not agree with some or all of the coding changes added by NCHS. But we ask that you support the specific changes we requested, even if you reject the other changes proposed by NCHS. Please sign the petition in support of our proposal to fix the ICD coding of ME/CFS. We must find a way to move forward so that we can count and track cases of ME/CFS.

NCHS will discuss this topic on September 15, 2021 at 2:15 EST at its ICD-10-CM Coordination and Maintenance Committee meeting. The meeting packet can be found here and includes the proposal summary and NCHS’ recommended coding changes on page 169. The meeting packet also includes directions on how to join the meeting on page 7.  Limited time will be provided in the meeting for questions and comments. If instead of signing the petition, you wish to send a personal comment, you can do so until November 15, 2021. Additional information on how to submit personal comments can be found here.

For more information, see these FAQs. 

More Details

ME/CFS cases can’t be identified in US mortality and morbidity tracking or in US research using electronic health records. This is because the term ME/CFS does not exist in the US ICD-10-CM and the term CFS, the term US doctors most often use, has the same code as the symptom of “chronic fatigue, unspecified.”

 Proposals were submitted in 2011, 2012, and 2018 to fix this problem but were rejected by the National Center of Health Statistics (NCHS) because of a lack of stakeholder consensus on what to do, particularly regarding the term CFS. There is no single solution to this problem that everyone will agree to. But the current inability to track ME/CFS cases is not tenable.

To avoid having a fourth proposal rejected, this year’s proposal to NCHS asked for the most basic changes possible - to add the term ME/CFS and to expand the category to allow non-viral causes. This proposal was submitted by the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, #MEAction, Open Medicine Foundation, Solve M.E., Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, and Pandora Org. Our goal is to finally have a mechanism to track cases of ME/CFS. Our proposal included the following recommendations:

• Expand the lead term for G93.3, post-viral fatigue syndrome, to accommodate non-viral triggers
• Remove “benign” from the term “myalgic encephalomyelitis”
• Provide separate subcodes (G93.3n) for post-viral fatigue syndrome and myalgic encephalomyelitis since ME is not always postviral. 
  • Per ICD convention, we also included a subcode for “other” conditions outside these.
• Add the terms “myalgic encephalomyelitis/chronic fatigue syndrome” and “ME/CFS” as inclusions (essentially a synonym) of myalgic encephalomyelitis.
  • This term has been adopted by US government agencies and clinical guidance providers
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When NCHS receives proposals, it sometimes recommends additional or different coding changes. This year, NCHS has made the following additional coding changes:

• Establish “myalgic encephalomyelitis/chronic fatigue syndrome” as the lead term for the G93.3n subcode. Include the terms “myalgic encephalomyelitis,” “chronic fatigue syndrome,” and “ME/CFS” as inclusions of that lead term. All these terms will use the same subcode.
  • The World Health Organization and other countries classify CFS in the neurological chapter.
• Add the term “systemic exertion intolerance disease” to the index file and give it the subcode used for “myalgic encephalomyelitis/chronic fatigue syndrome.” The index file is a secondary index of diseases.
  • In the 2018 meeting, NCHS said this addition was required if US doctors diagnose SEID.
• Revise the terms Akureyri's disease, Iceland disease, and neuromyasthenia in the index file to point to a new subcode, “Other post infection and related fatigue syndromes.”
  • These are historical names for what is now referred to as ME

A number of NCHS’ additional changes were previously rejected because of lack of consensus among stakeholders, including objections from patients and caregivers, on whether and how the coding should be fixed. As a result, NCHS never addressed the issues with the coding of ME/CFS. The disease remains coded as the symptom of “chronic fatigue, unspecified” in the US and invisible in tracking systems and in research using electronic health records.

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 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, Solve M.E.,  Massachusetts ME/CFS & FM Association, and the Minnesota ME/CFS Alliance. 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 will be provided when they are available.

We will be holding a webinar and listening session on September 2 at 1:00 PM EST to discuss the proposal and hear any concerns and answer questions. You can register for that webinar here.

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, and 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:

• 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
• Add separate subcodes for postviral fatigue syndrome and ME
• 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.

Donate to Pandora Org to help restore the quality of life for people with ME/CFS 

Senator Lana Theis introduced a resolution in March 2019, to the Senate Health Committee to recognize myalgic encephalomyelitis as a serious debilitating disease and urge key entities to improve patient care, prioritize new research, educate health professionals, and raise awareness about the severity of the disease.  

Brin Schuell, a Michigan advocate, led this initiative with his Senator to help improve the lives of Michigan residents throughout the state.  The Resolution was adopted on May 15, 2019.

SR20 

Page 197 at the following link. 

https://legislature.mi.gov/documents/2019-2020/Journal/Senate/pdf/2019-SJ-03-05-022.pdf

#MillionsMissing is a global campaign for ME health equality. On May 12th, 2018, we gathered at the Clinton-Macomb Library for a free community screening of the documentary Unrest, Panel Discussion and Visibility Action. 

We video taped comments to NIH Director, Dr. Francis Collins to tell him we need more funding and a cure!

We are the #MillionsMissing, and we will take a stand together and be seen!