Advocates Propose Fixes to Dysfunctional US Coding System for ME, CFS and ME/CFS

By David Tuller, DrPH

I have been focused lately on the continuing saga of the hijacked-and-still-unpublished ME/CFS clinical guidelines (HSUME/CFSCG) from Britain’s National Institute for Health and Care Excellence (NICE). The fate of the HSUME/CFSCG will apparently be addressed at an October so-called “roundtable” meeting of NICE and representatives from relevant interest groups. (I’m not sure what makes it a “roundtable” meeting or what the word “roundtable” is supposed to convey about the tenor of these HSUME/CFSCG proceedings.)

Anyway, while I’ve been focused on the HSUME/CFSCG, other stuff has been happening—like deliberations over proposed changes in how the US medical system should code the disease or diseases included under the constructs of ME, CFS, and ME/CFS. The US uses its own adapted version of the International Classification of Diseases (ICD), with is now in its tenth revision and continues to get updated.

The US Centers for Disease Control and Prevention held a scheduled meeting last week about many suggested changes to the ICD. Among them was a proposal from seven ME/CFS organizations. Patient advocate Mary Dimmock has been very involved in these efforts. Below is her perspective on the situation, which Jennie Spotila also posted on her blog Occupy M.E.


The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID
By Mary Dimmock

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.

That’s because the US ICD codes used to track diseases do not include a code for the term ME/CFS, the name adopted by US federal agencies and in clinical guidance. At the same time, the term “chronic fatigue syndrome,” the term most often used by US doctors, has been assigned the same ICD code as the symptom of “chronic fatigue, unspecified.”

As a result, virtually all cases of ME/CFS are effectively lost in a bucket of unspecified chronic fatigue due to any cause.

These ICD codes, short for the International Classification of Diseases, are maintained by the World Health Organization (WHO) as a globally agreed classification system to support tracking of diseases across countries. ICD codes are used to track disease mortality and morbidity and to assess disease burden and healthcare utilization and cost. In the US, they are used in insurance billing. They show up in electronic health records and are used to research issues such as the causes and long term impact of diseases. NIH and CDC have both announced extensive plans to use electronic health records to do exactly that kind of research into Long COVID.

But as CDC reported at a recent conference, ICD codes alone are not sufficient to find the cases of ME/CFS in these electronic health records. Doing that required an expensive and time consuming manual chart review. Such manual reviews are unlikely to be done in reporting on mortality and morbidity or in most research using electronic health records. This includes those planned Long COVID studies. The obvious impact on Americans with ME/CFS is huge.

How is this possible and why has it never been fixed?

In WHO’s current ICD, the ICD-10, ME and CFS are classified in the neurological chapter. The WHO also allows countries to create their own versions as long as they follow WHO standards. When the US implemented its version, the ICD-10-CM, in 2015, it reclassified CFS from the neurological chapter to the Symptoms and Signs chapter and gave it the same code as the symptom of “chronic fatigue, unspecified.” This is not aligned with the WHO classification and no other country has done this, making it a uniquely US problem.

Proposals to fix this were submitted in 2011, 2012, and 2018 to CDC’s National Center for Health Statistics (NCHS), the US group that manages the ICD-10-CM. But NCHS rejected each of those proposals because of a lack of stakeholder consensus, including from patients and coding associations, on how to fix the problem. As a result, cases of ME/CFS are still coded as “chronic fatigue, unspecified.”

This year, seven ME/CFS organizations* submitted a fourth proposal, asking for the most basic change to move this forward–to add the term ME/CFS to the ICD-10-CM and support both viral and nonviral triggers for the disease. NCHS then added additional coding changes, including some that were previously rejected.

This situation is such a gordian knot that no single set of recommendations can possibly address all stakeholder concerns. But the status quo is completely unacceptable because it leaves those with M

For the sake of the 1 – 2.5 million Americans who had ME/CFS before the pandemic and for the sake of those who could develop ME/CFS following COVID-19, we must find a way to resolve this problem. Continuing to lose track of people with ME/CFS in US medical records, tracking systems, and research is simply not an option.

Please sign this petition calling on the US to fix its ME/CFS coding problem. Background on the ICD and why this is important are available on the petition site.

Thanks to Dr. Robert K. Naviaux, University of California, San Diego (UCSD), CA for the idea for the title.

*The organizations submitting this proposal were: 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, Pandora Org.





10 responses to “Advocates Propose Fixes to Dysfunctional US Coding System for ME, CFS and ME/CFS”

  1. Alicia Butcher Ehrhardt, PhD Avatar
    Alicia Butcher Ehrhardt, PhD

    Thank you. From one of the invisible. For over thirty-one years.

  2. Wendy Avatar

    Promoting ME/CFS by combining PVFS with Non Viral & other fatiguing illnesses is the complete opposite of what Ramsay, Hyde, Dowsett, Behan & Behan found in Myalgic Encephalomyelitis and is dangerous for those with Encephalomyelitis. ME has its own criteria and doesn’t need to be coupled with another medical condition to be valid as it has been included in the WHO ICD since 1969.

    In the words of ME expert Carruthers of the ICC 2011; “If clarity and adequacy are not achieved, several types of smudging may result. In other words, if the generalisations from the medical model are too generic, they have no chance of adequately meeting the patients’ experience of illness and much relevant data may be overlooked or misinterpreted. Thus, the move from a more specific clinical concept such as myalgic encephalomyelitis or fibromyalgia to a more generic concept such as chronic fatigue syndrome or chronic pain syndrome entails missing a lot of the information that makes the syndrome a name match, and an experience.”

  3. Guido den Broeder Avatar
    Guido den Broeder

    Please don’t lie. CFS is not classified in the ICD-10.

    Why do you fail to mention that they’ve proposed something similar several times before and that this has always been rejected?

    You also forgot to tell your readers that this proposal was opposed at the meeting by GAME, represented by me.

    There is a logical solution to this ‘problem’, but falsely claiming that there is a disease ME/CFS isn’t it.

  4. Suzy Chapman, Dx Revision Watch Avatar
    Suzy Chapman, Dx Revision Watch

    For clarity:

    In the WHO’s International version of ICD-10 (the version mandated by NHS England and used by many member states) Postviral fatigue syndrome is the ICD-10 Concept Title. It is classified in Volume 1: Tabular List in Chapter VI: Diseases of the nervous system at G93.3. Myalgic encephalomyelitis is the inclusion term under G93.3 Postviral fatigue syndrome and takes the same code.

    Chronic fatigue syndrome is not included in the Tabular List but is included in Volume 3: Alphabetical Index, where it is indexed to the G93.3 code.

    NHS England’s annual guide for coders: NHS Digital National Clinical Coding Standards ICD-10 5th Edition (2021) includes a caution note (on page 84) instructing coders and other end users that where the clinician has recorded a diagnosis of Chronic fatigue syndrome it should be coded to ICD-10 G93.3 Postviral fatigue syndrome.

    For the forthcoming ICD-11, Myalgic encephalomyelitis and Chronic fatigue syndrome are both specified as inclusions in the ICD-11 Foundation and the MMS Linearization (the ICD-11 equivalent to the Tabular List) under 8E49 Postviral fatigue syndrome. There is an exclusion under 8E49 for MG22 Fatigue.

    Around 25 Member States have been licensed by the WHO to develop adaptations of the WHO’s ICD-10 classification. These are known as “clinical modifications” or “national modifications” and their category content and code structure varies from the WHO’s unmodified ICD-10.

    Member States that have developed clinical modifications include: Canada, Germany, United States (also used by Belgium, Luxembourg and parts of Spain), Australia (also used by Ireland and Slovenia) and Thailand.

    How do Canada, Germany and the United States classify the G93.3 terms?

    Canada (ICD-10-CA): Postviral fatigue syndrome is the G93.3 Tabular List Concept Title. Both Benign myalgic encephalomyelitis; and Chronic fatigue syndrome are included in the Tabular List under G93.3. There is an exclusion for fatigue syndrome NOS (F48.0) under G93.3.

    Germany (ICD-10-GM): Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome] is the G93.3 Concept Title. There are three inclusions at G93.3 in the Tabular List: Chronisches Müdigkeitssyndrom bei Immundysfunktion; Myalgische Enzephalomyelitis; and Postvirales Müdigkeitssyndrom.

    United States (ICD-10-CM): Postviral fatigue syndrome is the G93.3 Tabular List Concept Title. Benign myalgic encephalomyelitis is the inclusion term under G93.3.

    But Chronic fatigue syndrome (as “Chronic fatigue syndrome NOS”) is classified in the Tabular List in Chapter 18: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified, as an inclusion under code R53.82 Chronic fatigue, unspecified. (NOS = Not Otherwise Specified.) There is an Excludes1: postviral fatigue syndrome (G93.3) under the R53.82 code and a reciprocal Excludes1: chronic fatigue syndrome NOS (R53.82) exclusion under the G93.3 code.

    I am in agreement with Guido that I cannot support the proposal submitted by IACFS/ME, SOLVE M.E., #MEAction and four other US organisations. Nor can I support the alternative structure proposed by NCHS as set out in the Diagnosis Codes Topic Packet for the September 14-15, 2021 ICD-10-CM Coordination and Maintenance Committee Meeting (on pages 171-172).

    I cannot support the addition of the conjoined term (Myalgic encephalomyelitis/chronic fatigue syndrome) or the conjoined acronym (ME/CFS) to ICD-10-CM, either as inclusion terms, as discretely sub-coded terms, or as index terms. I also consider a conjoined term would not meet WHO ICD-10 conventions for classification of discrete terms.

    I do not support the addition of the unadopted term: Systemic exertion intolerance disease (SEID) to ICD-10-CM, either as an inclusion term, or as a discretely sub-coded term, or as an index term.

    The term: Systemic exertion intolerance disease (SEID) has not been included in the forthcoming ICD-11 and has been rejected by SNOMED International terminology leads for addition to SNOMED CT International Edition.

    Suzy Chapman, Dx Revision Watch

  5. Suzy Chapman, Dx Revision Watch Avatar
    Suzy Chapman, Dx Revision Watch

    This is the alternative coding option proposed by NCHS at the September 14-15, 2021 C & M Committee meeting:

    NCHS Option (Topic Packet pages 171-172):

    ICD-10-CM Tabular List
    Chapter 6: Diseases of the nervous system (G00-G99)

    G93 Other disorders of brain

    G93.3 Postviral and related fatigue syndromes
    Excludes1: chronic fatigue, unspecified (R53.82)
    neurasthenia (F48.8)

    G93.31 Postviral fatigue syndrome

    G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome
    Chronic fatigue syndrome
    Myalgic encephalomyelitis

    G93.39 Other post infection and related fatigue syndromes

    Chapter 18: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)

    R53 Malaise and fatigue
    R53.8 Other malaise and fatigue

    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)

    [NB: The “Benign” prefix is proposed to be retired from the inclusion term “Benign myalgic encephalomyelitis” which would bring ICD-10-CM in line with the retirement of the “Benign” prefix for the WHO’s ICD-10 (Version: 2019) and in line with ICD-11.]

    Under Index Modifications (among other code revisions and additions) NCHS proposes to replace the current index term:

    -benign myalgic G93.3


    -myalgic, (benign) G93.32

    and add the following (unadopted) term to the Index:

    Systemic exertion intolerance disease [SEID] G93.32.

    See pages 171-172 Diagnosis Codes Topic Packet for full proposal:

    The deadline for public comment on either proposal presented on Day 2 of the September 14-15 C & M Committee meeting is November 15, 2021.

    Suzy Chapman, Dx Revision Watch

  6. Suzy Chapman, Dx Revision Watch Avatar
    Suzy Chapman, Dx Revision Watch

    Agenda topic: Page 169: Postviral and other related syndromes

    Traci Ramirez (NCHS)
    Mary Dimmock (on behalf of 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)

    Day 2 Recording and slides:

    You will need to put in this Password to access the recording: $E33^Cb@

    Presentation begins at: 04:22:25 ends at 04:40:35

    On the right of the audio and slides, you should see an auto scrolling transcript of the presentation and the discussions that followed.

    Suzy Chapman, Dx Revision Watch

  7. jimells Avatar

    The reason for the coding confusion is simple enough: powerful special interests (“stakeholders”) are still carrying water for insurance companies. Those special interests are still intent on burying the illness. Only judicial action can put those special interests in their place (I suggest the Graybar Hotel would be appropriate, considering the vast harm caused by those special interests).

    No personal health records search carried out in the US by software or manual review will find more than a handful of us – a desirable outcome for the CDC. In the US, health records are notoriously inaccurate. Often the diagnostic code is chosen to match the treatment, not the patient’s actual illness. This is done in order to get insurance companies to pay claims.

    Changes to diagnostic codes need to be made carefully and as seldom as possible, as changing codes can be very expensive to implement. As a retired consulting programmer, I have personal experience in this area: one of my major projects was to design, write, and implement a medical billing system aimed at small clinics. Those entities can not afford the endless delays imposed by insurance companies who often reject claims for reasons such as “diagnostic code does not match treatment”.

    If the CDC someday decides to conduct a real epidemiological study of ME, they could simply expand on Leonard Jason’s longitudinal work with university students. We have been waiting almost ten years for CDC’s much-ballyhooed-but-now-forgotten “Multi-site Clinical Assessment of CFS” to publish something useful. That strongly suggests that CDC is still in the mindset of burying the illness.

  8. Guido den Broeder Avatar
    Guido den Broeder

    There is currently a desperate attempt ongoing in several countries, incuding the Netherlands (by Jansen and Van der Meer), to get ME/CFS recognized in one way or another as its own disease different from both ME and CFS. Apparently they have now given up on their earlier attempt to erase ME.

    No matter what you think the SEID grouping of four symptoms means, this will never happen in any classification because it goes against existing nomenclature. As I explained to Mary Dimmock (and many times before to David Tuller), you can’t usurp an already existing disease name. There are rules.

  9. Jamess Mililer Avatar
    Jamess Mililer

    Hello! I appreciate your effort in publishing this. To move forward on a plan to establish the use of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) in the ICD-10-CM (International Classification of Diseases-10th Revision), which will then allow for the classification of the disease through CDC guidance and proper allocation of funds, seven ME/CFS organizations have again asked to include the term in the coding system, thus giving the public a better ability to recognize the disease. The disallowed coding modifications were introduced after the fact. Autoflower Seeds

  10. Colleen Steckel Avatar
    Colleen Steckel

    I also can not support the proposal. I have worked very hard to educate many of my doctors based on the ME ICPrimer that my diagnosis is coded is G93.3 and that is now reflected in my records. I know many who have also successfully been diagnosed with the G93.3 code.

    From recent blog at ME International

    “The ME-ICC has specific criteria for ME, and the IOM (now the National Academy of Medicine) created a new diagnosis criteria based mainly on CFS research. What is needed is a clarification by the CDC that the R53.82 code applies to the CFS-Fukuda definition and that G93.3 applies to the ME-ICC diagnosis and if someone is diagnosed using the ME/CFS criteria then they need to be further screened to clarify which patient group applies and use the appropriate code. SEID should not be added to the mix as it just adds another layer of confusion.”

    Read more here: