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Guest Blog – Bringing ME/CFS/SEID into Mainstream Medicine

Establishing a Distinct ICD-10 Code

by Jon D. Kaiser, MD – CFS researcher, clinician, and patientJon Kaiser, mainstreaming ME/CFS

Dr. Jon Kaiser is a recovered CFS/ME patient, clinician, and researcher who has been caring for people with CFS/ME, AIDS, and cancer for the past twenty-five years. In this guest blog he shares his thoughts on the importance of getting an ICD-10 code established specifically for ME/CFS/SEID.

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Those of us working in this field have been encouraged of late by the heightened interest in this disease. The Institute of Medicine (IOM) report released in early 2015 represented a big step toward mainstream acceptance. However, during my three decades of experience as a CFS researcher, clinician, and patient, I believe that unless this disease is firmly integrated into mainstream medicine, progress on its diagnosis and treatment will remain incremental at best.

Much of my experience comes from having cared for patients during the early days of the AIDS epidemic. When I started treating patients with HIV/AIDS, the HIV virus had not yet been discovered. We didn’t know what was causing our patients to die and we didn’t have any blood tests to diagnose or monitor the disease. We also did not have any available treatments. Another commonality was the way in which HIV/AIDS was marginalized by society. President Ronald Reagan never once uttered the term “AIDS” during his presidency despite thousands of people dying from this epidemic.

So what factors brought about a transformation in how HIV/AIDS was diagnosed and treated?

  • First and foremost, the cause of the illness was discovered.
  • Second, massive amounts of “Big Pharma” money (tens of billions of dollars) poured into researching treatments.
  • Third, a biological marker of disease progression, the CD4 count, was identified.
  • And fourth, the health insurance industry gave the disease a reimbursement code and never hesitated to cover its treatment.

I believe all of these milestones need to occur for CFS/ME/SEID to be properly incorporated into mainstream medicine. While it may take additional time to acquire substantial research funding and useful blood tests, establishing an insurance reimbursement code specifically for this disease can be achieved in the short-term. This would represent a significant milestone in achieving at least one of the key factors necessary for this disabling condition to be recognized by mainstream medicine.

Regardless of one’s opinion on the pros and cons of the new name set forth by the recent IOM report, I believe that having an insurance reimbursement code for SEID would go a long way to establishing credibility for it as a mainstream disease thereby helping physicians and patients to receive adequate reimbursement by third-party payers. The IOM report itself states, “a new independent code should be assigned for this disease in the current edition of the International Classification of Diseases.”

ICD-10ICD-10 codes are maintained by the ICD-10 Coordination and Maintenance (C&M) Committee, which is a federal interdepartmental committee comprised of representatives from Centers for Medicare and Medicaid Services (CMS) and the Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics (NCHS). Input is welcome from all stakeholders, including individual physicians, physician organizations, other stakeholders, and private citizens. Learn more HERE.

Despite severely limited resources, patients with this condition have fought long and hard to attain mainstream acceptance of this disease. Establishing an insurance reimbursement code specifically for SEID would mark a significant step forward in this effort.

5 Comments

  1. PATRICIA WHITE on January 11, 2016 at 9:21 pm

    WHAT CRITERIA WOULD BE USED TO DETERMINE IF YOU HAVE ME/CFS ?

    MY DIAGNOSIS & QUALIFICATION FOR SSDI WAS BASED ON THE 1988 CITERIA.

    I HAD A SEVERE UPPER RESPIRATORY ILLNESS THE SPRING OF 1986 .
    “LIFE” WAS NEVER THE SAME AGAIN AND BY FALL OF 1987 I WAS NO LONGER
    ABLE TO BE EMPLOYED .

    OVER THE YEARS , I HAVE HAD A RELAPSING & REMITTING OF THE EBV VIREMIA ,
    BUT NEVER FULLY RECOVERED TO THE POINT I COULD RETURN TO A “NORMAL ” LIFE .

    OVER THE LAST DECADE , I HAVE HAD A VARIETY OF OTHER ILLNESSES , INJURIES , AND
    DIAGNOSES . THE MOST LIMITING IS THE CHRONIC “FIBRO” FLARE SINCE I SUSTAINED MY INJURIES .

    SO , 29 YEARS LATER , I AM NOT SURE WHAT MY “TRUE” DIAGNOSIS WOULD BE .

    RECOGNITION OF ME/CFS BY THE MEDICAL COMMUNITY WOULD BE GREAT .
    EACH TIME THAT I HAVE NEEDED TO BE SEEN BY A SPECIALIST OVER THE LAST
    DECADE I HAVE BEEN MET WITH EXTREME PREJUDICE AGAINST THE ILLNESS .

    THE LAST DOCTOR FELT THAT IT WAS A “GARBAGE CAN ” DIAGNOSIS.
    THERE WAS “NO RESEARCH TO PROVE IT EXISTS , NO DIAGNOSTIC TESTS ” ….
    AND THEREFORE ONLY EXISTED IN MY IMAGINATION.

    BECAUSE OF THAT , I FEEL MORE THAN A DIAGNOSTIC INSURANCE CODE NEEDS TO BE
    ACCOMPLISHED .

    RESPECTFULLY ,
    PATRICIA WHITE

    I



  2. Mary Dimmock on January 12, 2016 at 9:27 am

    I agree that the ICD issue needs to be addressed but think the resolution is more complicated.

    In the WHO’s ICD-10, both ME and CFS are categorized in the neurological chapter. However, in the US specific version (the ICD-10-CM), the National Center for Health Statistics (NCHS, part of CDC) reclassified CFS to the “Symptoms” chapter under “malaise and fatigue” and uses the same code as chronic fatigue. ME is still in the neurological chapter. This change has split ME and CFS in the ICD-10-CM. Note that the US is the only country that I know of to reclassify CFS to the Symptoms chapter in its version of ICD-10.

    Continued use of this “CFS” code for this disease is problematic because by definition, CFS includes patients who do not have this disease – e.g. those without PEM and it trivializes the nature of this disease. Additionally, it will also make it impossible to separate cases of chronic fatigue from CFS in tracking systems.

    The process used by the NCHS to establish a new code requires the submission of a proposal and the presentation at a meeting followed by a period of public comment after which NCHS makes a decision. Currently, the ICD-10-CM is under partial freeze until October 2016 and only codes for new diseases are being acted on between now and then.

    A proposal for the ICD-10-CM will need to specify the “chapter” and location in that chapter for the disease term. Examples of ICD chapters are neurological, respiratory, mental health, etc.

    The other issue that would need to be addressed is whether the IOM criteria are intended to describe the same disease as the “ME” criteria that already exist. The IOM report was clear that a “diagnosis of CFS is not equivalent to a diagnosis of ME” and that they based their criteria on the CCC. If this new code is intended to describe the same disease as the ME definitions, then creating a new code in a different ICD location will confound the confusion on the nature of the disease that already exists.

    In August 2016, CFSAC recommended that doctors use G93.3, the code used for ME, until such time as further research provides the scientific rationale for moving this disease to another chapter.



  3. Jean Harrison on January 13, 2016 at 9:48 pm

    The WHO has made it clear that it thought that ME = CFS; they put it under the same code in the ICD-10. Chronic fatigue was put under F48, a psychiatric code. So at the inception of the ICD-10, CFS & ME were the same and neurological; chronic fatigue was psychiatric.

    That was before the definition of CFS was so broad that it really has become to mean anything and nothing. (Oxford ’91).

    The US, under the auspices of NCHS fed into the un-labled redefinition of CFS by putting CFS in 780.71 in the ICD-9CM. (Symptoms, signs and ill-defined conditions, fatiguing illnesses). The US has really altered things from the original WHO designations.

    So despite the WHO staying with the premise that CFS was a neurological illness, the same as ME; the US has entirely changed the intention of WHO and decided that CFS is the same as a’chronic fatigue’ ; and also took “chronic fatigue” out of the psychiatric category. This is most irregular and against WHO protocol.



  4. Mary Schweitzer on January 14, 2016 at 1:13 am

    I suggest that you look at the recommendations made by the Chronic Fatigue Syndrome Advisory Committee of the Department of Health and Human Services over the years. They have certainly been there for a reason, and it is a shame to ignore the work they have done.

    Since 2004, CFSAC has consistently advised HHS to adopt the Canadian Consensus Criteria (2003) – at first, as it was; later, with an open workshop of experts convened to update the CCC with current research.

    There has also been a specific CFSAC response to the IOM and P2P reports; you will find them here:

    http://www.hhs.gov/advcomcfs/recommendations/2015-08-18-19-recommendations.pdf



  5. Sara on January 19, 2016 at 8:07 pm

    I used to have CFS. Now I Have ME. My CD4 count is very low. I DO NOT have HIV. Why is my CD4 count so low? I have been bed bound for 2 years following a respitory virus/ FLU.