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Letter to NCHS

Discussion in 'Action Alerts and Advocacy' started by Jill McLaughlin, Nov 18, 2011.

  1. Jill McLaughlin

    Jill McLaughlin

    Yes, my husband actually responded! He does not get involved in advocacy per se but this has crossed the line into the medical arena and can affect patient diagnosis, treatment, reimbursement and disability issues.
    Today it the deadline for comment to NCHS.

    November 17, 2011

    Donna Pickett RHIA, MPH
    Medical Classification Administrator National Center for Health Statistics -?
    CDC 3311 Toledo Road
    Hyattsville, MD 20782
    Via email: Donna Pickett <>
    cc: NCHS <>

    Re: ICD-?10 CM & ICD-?9 revisions for CFS (Chronic Fatigue Syndrome)

    Dear Ms. Pickett:

    I am a physician with 20 years experience treating patients with ME, CFS and FM.

    Although there are some similarities, they are dissimilar enough that they
    should be considered three separate entities. FM is mainly a muscucloskeletal
    pain condition; CFS is profound fatigue substantially reducing functional
    capacity. ME is a disease with primarily neurological challenges, dysautonomia
    and CNS disturbances. For the most part, the primary providers for FM are
    Rhumatologists; for CFS, internal medicine; for ME neurologists/ID specialists.
    The providers are appropriately different as it should be because the most
    effective treatment protocols are quite different.

    ME has a clearly defined disease process while CFS by definition has always been
    a syndrome. A syndrome (for example CFS) is defined by symptoms. A disease (such
    as ME) is defined by symptoms plus objective and measurable findings. Evidence
    based medicine requires an appropriate treatment plan which must correspond to
    the patients diagnosis. Each ICD code represents a specific diagnosis, based on
    the corresponding definition. If a doctor fails to properly indicate the true
    nature of the patients illness through proper coding it will inevitably result
    in difficulty getting approval for appropriate treatment. Patients with a
    discreet neurological illness will not be properly identified and treated if
    diagnosed with a fatigue syndrome.

    For children with ME, a CFS diagnosis can be disastrous. Not only does the
    general public not get it, but if you look at the various department of social
    services guidelines for recognizing abuse and neglect, it includes many of the
    symptoms used to define CFS. Major red flags are fatigue, sleepiness in class,
    tardiness, decreased or erratic attendance. All you need is one over anxious
    teacher to misinterpret and parents have little recourse. It happens way too
    frequently. Children may be forcibly subjected to inappropriate or harmful
    treatments and forced to attend school, which can cause a great deal of damage,
    sometimes permanent. Or children may be taken into State custody. There are few
    pediatricians who understand ME so it is difficult to find support or backup. No
    one who cares about children should allow kids with ME to be diagnosed with CFS
    or in any way connecting or combining them as this proposal by the Coalition 4
    ME/CFS would do.

    For years persons with CFS (or CFIDS) have been subject to ignorance and
    derision from the medical profession, educators and the general public. Mention
    CFS often elicits an oh yeah, I was real tired too. I think I might have had

    Understandably, people with CFS are frustrated. The initiative to link ME with
    CFS may simply be a desperation attempt to get more respect. From the medical
    perspective, this is the wrong move. If you look at all the definitions of
    these illnesses it includes a huge array of signs and symptoms. It is absurd to
    think that there is one cause and one cure for the people with such diversity of
    complaints and problems. Throwing ME and CFS together into one heading or one
    diagnosis is the last thing that should be done. The only way to establish
    better diagnostic and treatment protocols, or for basic and clinical research to
    make any sense is to have well established and well circumscribed cohorts, which
    this will not provide. This is what, for the most part, has been
    done, and the results for patients in terms of diagnosis or effective treatment
    have been abysmal. This must stop.

    I feel the frustration of persons with CFS but it does not make sense to link up
    CFS with ME anymore than CFS with MS or with anything other distinct diagnosis
    that may share the vague symptom of fatigue. To dredge up an old idea, CFS
    should have a more appropriate name. One that is taken seriously, but it should
    be one that stands alone, and one which would not be automatically confused or
    mis-referenced as "chronic fatigue." People with CFS deserve this. CFS could
    certainly and deservedly be renamed or redefined as appropriate; however,
    misappropriating or linking to another disease is not the answer.

    I recommend that ME should remain as G93.3 under Diseases of the Nervous
    I recommend denying the request to classify CFS as G93.9. If CFS should be
    reclassified/redefined/renamed then do so without involving or interfering with
    any other illness, especially one for which a CFS diagnosis would be
    inappropriate or harmful.
    I disagree with NCHS Option 2. ME should not be moved or subdivided or put
    under a "chronic fatigue syndromes" category.


    Dr. Paul J. McLaughlin

  2. Kelly



    Just for clarification Dr. McLaughlin is a chiropractor.
  3. Jill McLaughlin

    Jill McLaughlin

    Just for clarification, he is a licensed physician and uses the same ICD and CPT codes for dx, reimbursement and benefits and works in a clinic with medical doctors where diagnoses often are treated in tandem. The system and applications are still the same and have the same ramifications.


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