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WHO ICD codes and US ICD code change proposal by the Coalition 4 ME/CFS

Discussion in 'Action Alerts and Advocacy' started by Jill McLaughlin, Oct 15, 2011.

  1. Jill McLaughlin

    Jill McLaughlin

    The US government has coded CFS correctly. The WHO codes CFS to
    ME and some other counties have done the same. Like Dr. Phil says,
    how's that working for ya? Has anything changed? Any improvement
    in recognition or acceptance? Guess we could say no. So let's do
    what hasn't worked and expect a different result. What is
    this called?

    Other countries can and do use different definitions or meanings.
    This is what clinical modifications are for. The US has coded
    them accurately. CFS is a symptom syndrome.

    What was disconcerting is that the Coalition 4 ME/CFS posted
    proposals, announcements, FAQ's, letters etc that said that the
    purpose was to reclassify CFS as neurological.

    Only on the NCHS agenda write up did we find out that it was
    to code it to ME.

    Their premise to begin with is flawed and confusing.
    Mike Munoz, a member of the Coalition 4 ME/CFS steering
    committee, stated: The goal of this proposal ... is to ensure
    alignment with the best current case definition for CFS, which
    includes both viral and bacterial triggers.

    What CFS case definition includes viral or bacterial triggers?
    What is the "best case definition" for CFS upon which they
    wish to base said alignment? Their proposed code change
    does not align with the case definition as none of the CFS
    definitions define or describe what would be considered
    to be a neurological illness.

    This coalition can represent CFS and reclassify it but should
    not interfere with other illnesses, nor should the CFSAC.
    These same groups/people have orchestrated this
    ME=CFS=ME/CFS agenda for months and keep promoting
    and advertising it.

    ME can be diagnosed and is a stand alone diagnosis. ME is
    not a fatigue syndrome. ME/CFS is an amalgam and does
    not really exist as a diagnosis. There is no ICD code or
    classification. It was a term used in the Canadian definition
    which is really a mix of both, but has no official acceptance
    and is still used to mean different things.

    ME/CFS implies they are the same illness, which they are
    not. Most CFS definitions would exclude ME. So if X excludes
    Y, then talking about X/Y, X/Y research etc. makes no sense
    logically let alone scientifically. And we lament and blame
    doctors, journalists etc when they don't get it?

    This proposal and presentation to NCHS was all done behind
    the backs of most patients and stakeholders, ME patients in
    particular. This Coalition 4 ME/CFS is really a few State,
    online and even local support groups, certainly not
    representing many people in total. Were there any doctors
    or professionals involved in this proposal? Why wouldn't
    they admit it?

    The Coalition 4 ME/CFS then said they were presenting their
    proposal at the IACFS conference for input - AFTER it have been
    presented to NCHS and was up for consideration. Perhaps it
    would have been nice to ask for feedback or input BEFORE it
    was done. This has been in the works for months as some
    documents were dated July. And we have still had no report
    or information from this conference presentation or session.

    We were simply blindsided by this and trying to understand the
    implications. And still no word from the CFIDS Association
    or IACFS/ME. This is a change on the federal level and impacts
    diagnosis, benefits, reimbursement etc. Yet our national professional
    and patient orgs have no position? Opinion? Comment? Even
    some explanation would have been helpful. But dead silence.

    This proposal would deprive ME patients of their rightful
    diagnosis by keeping it officially as and connected to
    CFS. ME patients need to be properly diagnosed with ME,
    not permanently and officially thrown into the CFS fatigue
    wastebasket. Too many ME patients have been harmed
    or even died, beyond the actual illness, but from the
    CFS misdiagnosis.

    ME is coded correctly as it has been for 40 years and should
    remain as is and not be changed or subdivided. CFS is coded
    correctly as is to fit the current definition.

    Those with ME should oppose the changes put forth to NCHS
    by the Coalition 4 ME/CFS and keep the codes as they currently

    NCHS review committee:
    Donna Pickett, RHIA, MPH
    Medical Classification Administrator
    National Center for Health Statistics
    email: Donna Pickett <>

    November 18, 2011 is the deadline for receipt of
    public comments on proposed code revisions
    discussed at the September 14, 2011 ICD
    Coordination and Maintenance Committee meeting.

    Jill McLaughlin

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