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Explanation of ICD codes and the Opposition to the Coalition 4 ME proposal to NCHS

Discussion in 'General ME/CFS News' started by Jill McLaughlin, Oct 12, 2011.

  1. Jill McLaughlin

    Jill McLaughlin

    ICD codes determine the diagnosis. We have recognized "It's
    the name, stupid" and even "It's the definition, stupid." But
    perhaps it should be "It's the diagnosis, stupid."

    They all come into play, especially for advocacy. The name
    sets the public awareness scene. The definition is
    most important for research purposes to define a reliable
    and representative patient cohort. The diagnosis is for the
    clinical setting.

    More importantly, they all have to match and be used specifically
    and consistently with the same terminology and meanings. This
    is where things have spun out of control and lost the plot as terms
    all used differently or to mean different things.

    For practical purpose, the ICD code determines the diagnosis.
    ICD codes are beyond obscure codes used for billing purposes
    or gathering statistics. With the overreach of electronic records,
    the code IS the diagnosis that is in your record and follows you.

    The ICD codes are the diagnosis, but do NOT determine what that
    diagnosis actually is (which is what the disease definition does).

    This is where the Coalition 4 ME/CFS proposal to change the
    ICD codes fails to do what they say they want or what
    claim it will; in fact it will do the opposite.

    Changing the code to neurological will not make a difference.
    It will still be a fatigue syndrome diagnosis of exclusion. CFS
    does not define or describe a neurological illness so fudging
    the codes will not help. The code will not override the definition.

    However, the information that the Coalition 4 ME/CFS are giving
    to the patient community seems to be misleading and deceptive.
    They claim that their recommendations to NCHS will not affect
    ME and state that it is only to reclassify CFS as neurological. But
    their actual recommendation to NCHS was to classify CFS
    to the same ICD code as ME at G93.3, which will combine them
    both under a single code (see info below).

    To change the code for CFS to the same code as ME will only
    make them the same (diagnosis) and will be viewed as
    synonymous terms. Adding the term ME will still not change
    what it is. True ME will not exist. The ME-ICC will be for
    naught, and this proposal does the opposite of what the
    ICC calls for.

    This clearly reflects their intention for ME=CFS=ME/CFS which
    they have promoted and advertised all along. Hint: this is what
    Wessely does: it allows him to study fatigue and pretend
    to be studying ME

    ME is not a fatigue syndrome. This proposal would deprive
    ME patients of their rightful diagnosis by keeping it officially
    as and connected to CFS.

    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 by the
    Coalition 4 ME/CFS.

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

    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

    The Coalition 4 ME/CFS proposal, summary, FAQ etc. say that it is
    only to reclassify CFS as neurological:

    NCHS report states that the Coalition 4 ME/CFS recommended that
    CFS be added as an inclusion term along with ME under code G93.3.

    *The Coalition 4 ME/CFS has said that there were doctors or medical
    professionals involved or who supported this proposal. Yet the only
    basis of support I have actually seen them produce as evidence are
    CFSAC recommendations. But again, the only CFSAC recommendations
    I have seen are to change CFS to a neurological code, but not code it to
    ME *as they have actually done.

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