Built on Hope - Strong in Advocacy - Finding a Cure Through Research
Effective October 1, 2022, updates to the US ICD-10-CM will enable tracking of people with ME/CFS, including those who develop the disease following COVID. These updates are specific to the ICD-10-CM, the US version of the International Classification of Diseases. They are the result of a proposal from ME/CFS organizations and subsequent recommendations by the National Center for Health Statistics (NCHS) were discussed at NCHS’ September 2021 ICD-10-CM meeting. The announcement of the release of the updated ICD-10-CM is here and the updated ICD-10-CM files are here (choose the tabular/index file).
The main ICD-10-CM changes for ME/CFS, CFS, and postviral fatigue syndrome include:
•Addition of the term ME/CFS
•Removal of the word “benign” from the term “myalgic encephalomyelitis”
•Expansion of the G93.3 title from “postviral fatigue syndrome” to “postviral and related fatigue syndromes” to encompass both viral and non-viral causes
•Addition of subcodes under G93.3
•Deletion of the term “chronic fatigue syndrome, NOS” from R53.82 and
addition of the term“chronic fatigue syndrome” to G93.32
•Addition of exclusions, used to indicate where two disease codes should not
be used at the same time
•Addition of a note to direct a coder to also use code U09.9 forpost-COVID condition when appropriate.
The revised tabular listing for ICD-10-CM for these terms is:
G93.3 Post viral and related fatigue syndromes
Use additional code, if applicable, for post COVID-19 condition, unspecified (U09.9)
Excludes1: chronic fatigue, unspecified (R53.82) (1) See note 1 below
G93.31 Postviral fatigue syndrome
G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome
Chronic fatigue syndrome
G93.39 Other post infection and related fatigue syndromes
R53.82 Chronic fatigue, unspecified
Excludes1: chronic fatigue syndrome (G93.32)
myalgic encephalomyelitis (G93.32)
post infection and related fatigue syndromes (G93.39)
postviral fatigue syndrome (G93.31)
In addition to the main tubular file, the ICD-10-CM also includes a secondary index file with these terms:
•SEID (systemic exertion intolerance disease) with a code of G93.32
•Akureyri's disease; Iceland disease; Neuromyasthenia (epidemic) (postinfectious); and post bacterial fatigue syndrome, all with a code of G93.39
1)This is currently listed as “chronic fatigue syndrome NOS (R53.82)” in the revised ICD-10-CM listing linked above. This is an error that will be corrected in the September 2022 addendum prior to the October 1 implementation.
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 firstname.lastname@example.org.
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.
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:
When NCHS receives proposals, it sometimes recommends additional or different coding changes. This year, NCHS has made the following additional coding changes:
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.
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:
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
Unrest tells the first-person story of Jennifer and her husband, Omar, newlyweds grappling with how to live in the face of a lifelong illness. But it is also a global story about an international community of patients with a serious, life-altering illness — millions suffering invisibly and left at the margins of medicine and science.
You can watch the entire documentary on Netflix.
Great Advocacy for our Michigan team. Governor Rick Snyder signed a proclamation declaring May 12, 2018 to be Myalgic Encephalomyelitis,/ Chronic Fatigue Syndrome (ME/CFS) Awareness Day.
WHEREAS, Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a severe neuroimmune disease characterized by overwhelming exhaustion, cognitive problems, pain, post-exertional relapse, immune disorders, headaches, cardiac symptoms, dizziness and balance problems, and that leaves many ME patients homebound or bedridden for years at a time and as many as 75% unable to work; and
WHEREAS, because of stigma and lack of attention by the government and the research and medical communities, patients struggle to access appropriate medical care and rarely recover due to a lack of treatments, resulting in loss of hope and thus higher rates of suicide; and
WHEREAS, ME afflicts 836,000 to 2.5 million Americans, more than 30 thousand in Michigan, and 17 million worldwide, at an annual cost to our country of $18-24 billion dollars per year in lost productivity and medical costs; and
WHEREAS, awareness of ME should lead to increased funding for research by the federal government and private entities and result in better medical care with more accurate diagnosis and appropriate treatments:
NOW, THEREFORE, I, Rick Snyder, governor of Michigan, do hereby proclaim March 12 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day in Michigan.
#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!
On May 2, 2018, several people from Michigan meet with Senator, Debbie Stabenow's office to discuss how she can help advance ME/CFS funding and medical education. Amanda, her local medical staffer, is going to facilitate introductions to people at the State's Department of Health, and with other key people in the medical community.
She is also going to introduce us to people on the Health Policy Committee so we can re-word Resolution 0372 and get it on the House Floor for a vote.