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

Guest post by Mary Dimmock

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.

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<E/CFS invisible–not coded, not counted, not researched.

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, #MEAction, Open Medicine Foundation, Solve M.E., Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, Pandora Org.

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19 Responses to The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID

  1. Chris Heppner says:

    Jennie, good for you-again! I strongly suspect that the situation is the same in Canada. What a crazy, Kafkaesque bureaucratic world we live in. Chris

    • Suzy Chapman says:

      Hi Chris, no, you do not have the same situation in Canada.

      Canada also uses a “clinical modification” of the WHO’s ICD-10, known as ICD-10-CA, which is developed, maintained and updated by the Canadian Institute for Health Information (CIHI).

      For the ICD-10-CA Tabular List this is the code structure:

      Chapter: 6 Diseases of the nervous system

      Other disorders of the nervous system (G90-G99)

      G93 Other disorders of brain

      G93.3 Postviral fatigue syndrome
      Includes: Benign myalgic encephalomyelitis
      Chronic fatigue syndrome

      Excludes: fatigue syndrome NOS (F48.0)

      So whether the clinician or coder records a diagnosis of Postviral fatigue syndrome; Benign myalgic encephalomyelitis; or Chronic fatigue syndrome, all three terms are coded to the ICD-10 G93.3 code.

      Suzy Chapman, Dx Revision Watch

      • Suzy Chapman says:

        I should mention also, that in January 2020 the WHO released what will be the final update of the International version of ICD-10, in the life of ICD-10 (ICD-10 Version: 2019).

        For this final update, WHO has retired the prefix “Benign” from “Benign myalgic encephalomyelitis”.

        In March 2016, a representative from the Canadian Institute for Health Information submitted a request and brief supporting rationale to the WHO-FIC ICD-10 Update and Revision Committee (URC) for removal of the “Benign” prefix from “Benign myalgic encephalomyelitis”.

        The URC approved this request in September 2016. This approved revision was implemented for the final update of the WHO’s International version of ICD-10 (ICD-10 Version: 2019) which was released in January 2020.

        This change for ICD-10 had not been carried forward to ICD-11 by the WHO or the groups responsible for the development of ICD-11.

        In February 2020, I submitted a new proposal and rationale text for removal of the “Benign” prefix for ICD-11 citing among other reasons, the precedent decision of the URC in September 2016 and the implementation of that decision for the final release in the life of ICD-10. This new proposal was approved in November 2020.

        The removal of “Benign” from “Benign myalgic encephalomyelitis” for the final update of the WHO’s International version of ICD-10 and now for the forthcoming ICD-11, has been widely welcomed and sets a precedent for all the national modifications of ICD-10.

        A Canadian advocate approached the Canadian Institute for Health Information (CIHI), last year, with a request that this change is also implemented for the next update of ICD-10-CA.

        Suzy Chapman, Dx Revision Watch

        • Sylvia says:

          Thanks Suzy.
          What are your thoughts about the aims of this initiative from an international perspective? Certainly case definitions for private insurance coding are difficult to come by, but you and others have fought long and hard on this issue of retiring chronic fatigue syndrome from the general lexicon with the WHO.
          Thanks also to Mary Dimmock for this guest blog.

          • Suzy Chapman says:

            [I am posting this response over several posts for ease of reading.]

            Firstly, the issue of Chronic fatigue syndrome being coded as an inclusion under R53.82 Chronic fatigue, unspecified [as “Chronic fatigue syndrome NOS” with an Excludes1 for postviral fatigue syndrome (G93.3)] is peculiar to the US’s ICD-10-CM*.

            *Note: Parts of Spain have adopted the ICD-10-CM and have inherited the R53.82 classification.

            ICD-10-CM was modified from the WHO’s International edition of ICD-10 by NCHS for use in morbidity and for reimbursement. It is maintained and updated annually by NCHS/CDC independently from the WHO. (Although ICD-10-CM can and does absorb some of the annual updates from the WHO’s International edition.)

            The WHO’s International edition of ICD-10 and Australia’s ICD-10-AM modification have Myalgic encephalomyelitis as the inclusion term under G93.3 Postviral fatigue syndrome, with Chronic fatigue syndrome indexed to the G93.3 code.

            Canada’s ICD-10-CA codes both Benign myalgic encephalomyelitis; and Chronic fatigue syndrome as Tabular List inclusion terms under G93.3 Postviral fatigue syndrome.

            Germany’s ICD-10-GM modification has “Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome]” as the “concept title” (or lead) G93.3 term, with three Tabular List inclusion terms: Chronisches Müdigkeitssyndrom bei Immundysfunktion;Myalgische Enzephalomyelitis; Postvirales Müdigkeitssyndrom.

            So for NHS England, for example, which currently mandates the use of the International edition (ICD-10 Version: 2016), whether the clinician records a diagnosis of “Postviral fatigue syndrome”, or “Chronic fatigue syndrome” or “(Benign) myalgic encephalomyelitis” – all three terms point the coder to code G93.3.

            For NHS England, SNOMED CT UK Edition terminology system is mandatory for use in primary care, at the point of care, and is also being implemented across all NHS secondary care settings, including mental health and dentistry. For SNOMED CT, Chronic fatigue syndrome is the Concept term and “Preferred term”, with Myalgic encephalomyelitis and a number of alternative terms under Synonyms which take the same code. For SNOMED CT, Postviral fatigue syndrome is assigned a different code and sits under different Concept Parents, but all three terms are mapped to ICD-10 G93.3 in the SNOMED CT to ICD-10 Classification Map.

            In indexing Chronic fatigue syndrome to G93.3, ICD-10 does not specify how it views the relationship between the term CFS and the term Postviral fatigue syndrome, or between CFS and Myalgic encephalomyelitis. Nor does it specify how it views the relationship between PVFS and ME.

            The WHO’s International ICD-10 Tabular List does not include any definitions, descriptive text or criteria for any of the three G93.3 terms.

            In NHS England, neither the 2003 Canadian Consensus Criteria, the 2011 ME International Criteria or the 2015 Institute of Medicine proposed criteria have been universally adopted; nor have any international primers for clinical practitioners been adopted. We are still waiting for NICE to publish its 2021 guideline but the November 2020 consultation draft is largely silent on terminology, classification, ICD coding and coding in terminology systems.

            The 2007 NICE Guideline CG53 used “Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management” and the acronym “CFS/ME”. The forthcoming 2020 NICE Guideline has changed the guideline’s title to “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management” and the acronym “ME/CFS”.

            But neither guideline gives any guidance or recommendations about the use of these conjoined terms in the context of classification and coding in ICD-10, ICD-11 or in SNOMED CT terminology system.

            In the UK, there has been a problem with clinicians recording ME and CFS patients with Neurasthenia (F48.0), Fatigue syndrome (F48.0), Malaise and fatigue (R53), Chronic fatigue (no specific ICD-10 code) or with one of the Somatoform disorder (F45.x) codes.

            The NHS Digital National Clinical Coding Standards ICD-10 5th Edition which is updated annually includes this caution note for coders:

            “Caution is required when ‘fatigue syndrome’ is used as a diagnosis within the medical record. The Alphabetical Index takes the coder to F48.0 Neurasthenia which includes fatigue syndrome. However many patients actually have chronic fatigue syndrome, which is an alternative name for the postviral fatigue syndrome or myalgic encephalomyelitis (ME). Chronic fatigue syndrome is coded to G93.3 Postviral fatigue syndrome. Coders should therefore clarify the nature of the fatigue with the responsible consultant before assigning a code.”

            But the issue of using the conjoined term “Myalgic encephalomyelitis/chronic fatigue syndrome” as proposed at the September 14-15, 2021 ICD-10-CM Coordination and Maintenance Committee Meeting by IACFS/ME, SOLVE M.E. and five other US organisations and also proposed in the alternative set of proposals presented at the meeting by NCHS, and the question of the use of conjoined terms in the context of ICD-10 and international use is moot.

            In January 2020, the WHO released what will be the final update in the life of ICD-10. Apart from addition of new viruses and the correction of factual errors or typos, no further updating of ICD-10 will be supported by the WHO, in preparation for member states transitioning from ICD-10 to ICD-11.

            Since no changes can be made to ICD-10, there is no point discussing potential changes to the way in which the three terms are classified and coded in the WHO’s ICD-10.

          • Suzy Chapman says:

            [Part 2 of my reply to Sylvia.]

            In 2019, in a decision supported by the Medical and Scientific Advisory Committee (MSAC) and the Classification and Statistics Advisory Committee (CSAC), the WHO confirmed that Myalgic encephalomyelitis; and Chronic fatigue syndrome would both be designated as inclusion terms in the ICD-11 MMS (the ICD-11 equivalent to the Tabular List); that Postviral fatigue syndrome would remain the Concept Title; and that the three ICD legacy terms would remain in the Diseases of the nervous system chapter.

            The IOM panel’s 2015 Report and its recommendations had formed part of the WHO’s literature review. WHO and ICD Revision Steering Group elected not to include the (unadopted) term “Systemic Exertion Intolerance Disease (SEID)” within ICD-11, either as a new Concept Title term, or as an Inclusion term, or under Synonyms or as an Index term as either replacements for one of more of the three legacy terms, or in addition to the three legacy terms.

            The joint proposal submitted by Chapman & Dimmock (March 2017) considered there was ‘insufficient evidence or support for incorporating the “Systemic Exertion Intolerance Disease (SEID)” definition into ICD-11, either as a replacement for one or more of the G93.3 legacy terms or for insertion as an inclusion term, synonym term or index term.’

            I cannot speak for Mary, but for myself I consider there remains insufficient evidence to incorporate the term into ICD-11. I would not support the addition of the SEID term to the US ICD-10-CM, either.

            As for the potential addition of the conjoined terms: “Myalgic encephalomyelitis/chronic fatigue syndrome” to ICD-11: there are ICD convention considerations relating to the potential conjoining of existing ICD terms and also to the use of acronyms and conjoined acronyms, which are beyond the scope of my reply, today, but which relate to the potential for loss of legacy data going forward.

            I do not consider the addition of the conjoined term: “Myalgic encephalomyelitis/chronic fatigue syndrome” to ICD-11 is tenable in the context of ICD conventions.

            ICD-11 does not specify how it views the relationship between the terms Postviral fatigue syndrome; Myalgic encephalomyelitis; and Chronic fatigue syndrome; and the WHO is silent on what it understands by the term “Myalgic encephalomyelitis/chronic fatigue syndrome.”

            The WHO’s International edition of ICD-10 Tabular List does not include any definitions, descriptive text or criteria for any of the three G93.3 terms. For ICD-11, there is a parameter for adding descriptions but WHO/ICD Revision has elected not to populate any text for the Descriptions field. WHO/ICD Revision cited a lack of consensus on a reliable diagnostic symptom pattern; that aetiology is still being discussed and the absence of a uniform treatment approach with reliable outcomes, as the rationale for retaining the three terms in their legacy chapter location and legacy hierarchy.

            The joint proposal submitted by Chapman & Dimmock (March 2017) had recommended assigning separate codes to Myalgic encephalomyelitis; and Chronic fatigue syndrome.

            The joint proposal submitted by Lily Chu on behalf of IACFS/ME (March 2017) had recommended assigning three separate codes to Postviral fatigue syndrome; Myalgic encephalomyelitis; and Chronic fatigue syndrome. Both proposals were rejected by WHO/ICD Revision in preference to retaining the status quo.

            In February 2020, the WHO stated: “The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted.”

            You have said: “…you and others have fought long and hard on this issue of retiring chronic fatigue syndrome from the general lexicon with the WHO.”

            To be clear: I have not advocated for retirement of the term “chronic fatigue syndrome” from either ICD-10, ICD-11, ICD-10-CM or any of the other clinical modifications of ICD.

            I have advocated for separate codes.

          • Suzy Chapman says:

            [Part 3 of my response to Sylvia.]

            Note also that the proposal submitted to the September NCHS C & M meeting by IACFS/ME, SOLVE M.E., #MEAction and four other US orgs has not requested retirement of the term “chronic fatigue syndrome” from ICD-10-CM.

            According to the texts put out by SOLVE M.E., recommendations for the R53.82 Chronic fatigue syndrome NOS term were not included in their submission because the submitting orgs were uncertain about how the term should be handled in the context of their recommendations for changes under G93 and G93.3.

            The alternative proposals from NCHS, as can be seen in the PDF of the Final Agenda (on Page 171), proposes to Add Chronic fatigue syndrome as an inclusion term under proposed new term and sub-code: G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome

            and to also Add ME/CFS and Myalgic encephalomyelitis as inclusion terms under proposed new term and sub-code: G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome.

            It’s important if people are signing the petition or submitting comment to NCHS on either of the proposals, that they familiarise themselves with the recommendations in both proposals.

            It would be unusual for NCHS/CDC to remove a term completely from the classification due to the potential for loss of legacy data going forward resulting in data aggregation/disaggregation issues. NCHS might on further consideration decide that both a “Chronic fatigue syndrome” term and a “Chronic fatigue syndrome NOS” need to be retained, as per their September 2018 proposals.

          • Mary E Dimmock says:

            Thank you to Suzy for the information on these terms in other countries and in ICD-11 and that ICD-10 is no longer being updated.

            Two points I’d add
            – The proposal submitted by the seven organizations did not propose moving CFS because previous proposals to move it back had all been rejected in their entirety because of a lack of stakeholder consensus on how to do that. Since ME/CFS is the term adopted by US federal agencies and in clinical guidance, the proposal focused just on adding ME/CFS as a way to move forward.

            – We also proposed expanding postviral fatigue syndrome to explicitly include non-viral causes because 1) the trigger is not always viral and 2) as currently titled, doctors may be hesitant to use terms in this category unless the trigger is viral and a viral infection is definitively established

            – Regarding SEID – Federal agencies rejected the term. But that does not preclude doctors from using it. NCHS has said that if SEID is used in medical records, they have to add it to the index.

          • Suzy Chapman says:

            It’s now 6 years since the IOM panel published its report, in early 2015.

            When the report was published, it should have contained a far stronger caveat that its Recommendations were just that – recommendations for the sponsor agencies to review and give consideration to.

            Within days of the report’s release, one of the peer reviewers for the report, who is also an editor for the CFS pages of the medical information website “UpToDate”, inserted the term “Systemic exertion intolerance disease (SEID)” into the site’s CFS, ME pages as though it were a given that the term would be adopted and implemented by the sponsor agencies.

            We have also seen incontinent use of the “SEID” term in media articles and by some patient organisations, including use by some orgs outside the US, whose countries do not use ICD-10-CM.

            The term “Systemic exertion intolerance disease (SEID)” was a recommendation only and the term hasn’t been adopted by federal agencies.

            It was said by Donna Pickett, at an earlier NCHS C & M Committee meeting, that because some clinicians had started to use the SEID term, the term needed to be incorporated into ICD-10-CM in order that it could be coded for.

            This is a specious argument. Clinicians should not be applying a term that was the recommendation only of an ad hoc panel – a term that has not been adopted and implemented by the agencies which sponsored the panel’s report. NCHS could have instructed clinicians not to report using an unadopted term – but elected not to do so.

            I see no rationale for requesting that the (unadopted) term, “Systemic exertion intolerance disease (SEID)” should be added as an Index term to ICD-10-CM, and indexed to a proposed new sub-code:

            G93.32 Myalgic encephalomyelitis/Chronic fatigue syndrome

            a term which does not appear in any WHO ICD classification.

            Nor do I accept arguments that it is “too late to stuff the cat back into the bag because clinicians are already using the term.”

          • Suzy Chapman says:

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

            NCHS Option (Pages 169-172):

            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
            ME/CFS
            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)

            Under Index Modifications (amongst other changes and additions) NCHS proposes to replace the term:

            Encephalomyelitis
            -benign myalgic G93.3

            with

            Encephalomyelitis
            -myalgic, (benign) G93.32

            and Add the following to the Index:

            Systemic exertion intolerance disease [SEID] G93.32.

            With regard to the NCHS option above: I cannot support this proposed revision to the existing Concept Title term:

            G93.3 Postviral and related fatigue syndromes.

            (I do appreciate that it has been challenging to author a better proposal for a replacement Concept Title term.)

            I can support assigning separate sub-codes for:
            Postviral fatigue syndrome and
            Myalgic encephalomyelitis

            but I cannot support Adding the conjoined term:
            G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome to ICD-10-CM

            or Adding the conjoined acronym ME/CFS as an inclusion under proposed new sub-code G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome.

            I can support Revising the existing Index term to

            Encephalomyelitis
            -myalgic, (benign) G93.xx

            But I cannot support the proposed Addition to the Index of:

            Systemic exertion intolerance disease [SEID] G93.32

            With regard to the proposal submitted by IACFS/ME, SOLVE M.E. et al, my understanding is that the following structure has been submitted for:

            G93.3 Postviral and other related fatigue syndromes

            G93.31 Postviral fatigue syndrome

            G93.32 Myalgic encephalomyelitis
            Myalgic encephalomyelitis/chronic fatigue syndrome
            ME/CFS

            Again, I cannot support this proposed revision to the existing G93.3 Concept Title term:

            G93.3 Postviral and related fatigue syndromes

            I can support assigning separate sub-codes for:
            Postviral fatigue syndrome and
            Myalgic encephalomyelitis

            (I would also support a separate sub-code for Chronic fatigue syndrome, had this been proposed by either party.)

            Again, I cannot support Adding the conjoined term: Myalgic encephalomyelitis/chronic fatigue syndrome to ICD-10-CM.

            Nor can I support Adding the conjoined acronym ME/CFS as an inclusion under any proposed new sub-code.

            But I shall be writing to NCHS in support of those parts of both options which I am able to support.

            Suzy Chapman
            Dx Revision Watch

        • Suzy Chapman says:

          Mary writes: ” Regarding SEID – Federal agencies rejected the term. But that does not preclude doctors from using it. NCHS has said that if SEID is used in medical records, they have to add it to the index.”

          Here in the UK, we have NHS clinicians and health practitioners sometimes assigning ME and CFS patients the terms:

          Chronic fatigue
          Medically unexplained symptoms (MUS)
          Persistent physical symptoms (PPS)

          with the latter two terms being used by service providers, such as dedicated “One-Stop” PPS clinics.

          I could not rationalise these terms being proposed to be added to the index of the WHO’s International edition of ICD-10 (if the annual ICD-10 update and revision process was still operative) or added to the forthcoming ICD-11, on the basis that these terms are being used in medical records and by service providers and therefore codes for these terms need to be made available in ICD.

          As an aside, if the alternative proposal option from the NCHS were to be approved, there would be all these terms available and recordable in ICD-10-CM:

          Postviral fatigue syndrome
          Myalgic encephalomyelitis/chronic fatigue syndrome
          Chronic fatigue syndrome
          ME/CFS
          Myalgic encephalomyelitis
          Other post infection and related fatigue syndromes

          [and possibly retention of “Chronic fatigue syndrome NOS” if NCHS Director/CDC were to decide that the R53.82 term needs to be retained somewhere in the classification for aggregation/disaggregation of legacy data going forward]

          And in the Index:

          Systemic exertion intolerance disease [SEID]
          Myalgic encephalomyelitis (benign)
          Postbacterial fatigue syndrome
          Postinfectious fatigue syndrome
          Postviral syndrome NEC

          plus a number of existing historical and alternative terms.

          Suzy Chapman
          Dx Revision Watch

          • Sylvia says:

            Thanks Suzy, Mary and Jenny.

            I cannot help but harken back to the petition (predominantly from the US) that called for an end to the IOM process before it started, because this meant entering into some agreement with the US bureaucracy about how to spend the US taxpayers’ money. Many patients preferred that this money go to science.

            SEID represented the only available evidence at that time, namely the 2day exercise test, which of course, calls for the willingness of any individual ME patient to endure more suffering. It was met with derision in some quarters, because SEID, to many doctors and patients, is just another way of saying ‘chronic fatigue syndrome.’

            Research has moved on in spite of this, and I feel that only by international collaborative efforts in research will there be any meaningful change. Billing codes may be necessary to obtain treatment for those who have access to such and as a hedge against homelessness for those less lucky. As such, billing codes can sometimes seem extraneous to a more general discussion. The film called Voices from the Shadows explains it better than I ever could.

            The IOM or American Academy of Medicine may have helped those in the UK and allied health systems to defend against the NICE criteria. That may have done some good. Now that the US is once again a funding member of the WHO, it will be interesting to see what happens next.

            Will cash-strapped organisations scramble for funding allocated to Long COVID, since the pockets of the disaled may still be full? Will more advanced imaging techniques continue to support the designation of encephalomyelitis so CFS can go away for good? Will there be more evidence of post-viral basal ganglia pathology or enteroviral infection in the gut on autopsy?

            To court the devil (in this case bureaucracy) can be a dangerous game.

            The perennially sad thing is that people who have been unable to defend themselves, and have found no effective advocate – those people do not qualify for care until they get their terminal notice and are placed on whatever palliative care is available at the time. Until then they can do nothing. They can only wait. Too often that waiting involves a plan for suicide.

            Thanks again for opportunity to enter into your discussion, and I hope that someday there is no need to argue these points at all. MS was once known as hysteria, so fiddle as we might with G93.3, it’s all we have at the moment. Or does chronic fatigue syndrome have some upside outside the realm of numbers and mortality tracking (including suicide) that can be directly related to this syndrome?

  2. Patty Hirst says:

    Thanks again Jennie for being on the ball with things that are so important to all of us. You are awesome! I’ve signed the petition, and hopefully everyone else will take the time too. Bless you.

  3. Learner1 says:

    Many of us have only been coded with R53.82 and NOT G93.3 over the past several years, even by ME/CFS specialists. How will they find us?

  4. Sylvia says:

    Thanks Mary. A gordion knot indeed. This is a separate issue, but I am wondering if anyone solicited a comment from Invest in ME Research Charity? I would be interested in their perspective. Their office is officially in London, but a European perspective might be helpful, too – since members of the IACFS/ME are also connected to Invest in ME Research Charity, as well as ME Research UK and others. I understand that this is an issue focused on the United States and something needs to be done. The ME and CFS world is a small one in many respects, since the powers-that-be have declined to fund research for treatment in any significant capacity. A case definition needs to be quite clear when doing research or advocating treatment for a heterogenous group of patients.

  5. Mary Dimmock says:

    Hi Sylvia
    Thanks for your comments. Excellent point about case definition. We need greater alignment on how cases are selected as some studies don’t even require PEM. I’ve participated in Invest In ME conferences and know we all share that concern.

    On ICD codes – WHO doesn’t establish different codes for different case criteria. But I will touch base with Invest In ME.

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