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NJCFS presentation to the IoM delivered by Pat LaRossa

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 31, 2014.

  1. Nielk



    Slide 1

    My name is Pat LaRosa. I am President of the New Jersey Chronic Fatigue Syndrome Association and
    am collaborating with the Let’s Get it Right Group. Patients’ lives rest on the outcomes of your
    project. We thank you for the opportunity to speak.

    My first remarks are about the name.

    Slide 2
    What is in a name? Webster states fatigue is a word or phrase that constitutes a distinctive

    Slide 3
    What is this? It is edible and red. We can call it the “Edible Red Thing.”

    Slide 4
    What should be included in a study to learn more about it? There are many edible and red things. If
    you include them all, will you learn what you need to know about the specific red edible?

    Slide 5
    This is the problem with using one feature or symptom shared by many other things. It reveals
    nothing specific of the thing you want to know about. Yet, many ME/CFS studies use criteria that
    could include people who do not have ME/CFS.

    Slide 6

    Fatigue, as mentioned earlier, is a common symptom reported to doctors. The word “fatigue” does
    not come close to the symptom experienced by people with ME/CFS. Malaise is no better. Malaise is
    defined as a generalized feeling of discomfort, illness, or lack of well-being.i
    I am not sure there is a
    fitting word. “Prostration” - at its maximum - is the only word I find that comes even close.

    Is it good science to use a single symptom as the name of a disease? Fatigue is just one aspect of
    what is happening in ME/CFS.

    Slide 7

    Without adding all the components of an illness there is no defining line between the causes of
    fatigue. The tomato, the radish and apple are the same thing - “red edibles”- and all fatiguing
    diseases are merely fatigue.

    Outside the US, the name Myalgic Encephalomyelitis (ME) is accepted internationally, including the
    World Health Organization (WHO.) In recent years, ME has been accepted by US government
    agencies, using ME/CFS as the name. Some references might be needed for a time to redirect people
    to ME, but it is now time to make the change to the single factual name.

    In 2011, the name “Chronic Fatigue Syndrome” was rejected by the international panel that wrote
    Myalgic Encephalomyelitis: International Consensus Criteria. In this document, ME is declared the
    appropriate name based on "research and clinical experience that strongly points to widespread
    inflammation and multisystemic neuropathology." It further states, “Using ‘fatigue’ as a name of a
    disease gives it exclusive emphasis and has been the most confusing and misused criterion.” No other
    disease adds fatigue to it name.ii
    We urge you to adopt the name Myalgic Encephalomyelitis (ME) - a
    name that is appropriate to the severity of the disease.

    Slide 8
    I would now like to turn the issue of Coding and I thank Massachusetts CFIDS/ME and FM
    Association, PANDORA Org and advocate Mike Munoz for the use of some of their materials.

    Slide 9

    The CDC defined and named CFS in 1988. At that time, the ICD-9 contained ME under “Diseases of
    the Brain.” There was no listing for CFS until 1991, when it was added under “Symptoms and
    Signs/Malaise and Fatigue.”
    Diagnostic codes affect medical care and insurance benefits. The release of the ICD-10-CM raises
    many concerns. The issue of psychiatric diagnosis for ME/CFS may be even more likely with the
    publication of the Psychiatric Diagnostic Manual 5 (DSM-5) which introduces a new psychiatric
    diagnosis, Somatic Symptom Disorder (SSD).iii

    In the ICD-10-CM, there two places that ME/CFS might be classified.

    Slide 10

     G93.3 ME, CFS, PVFS – "Other Disorders of the Brain", "Diseases of the Nervous
    System Disorders

    Slide 11

     R53.82 CFS - "Symptoms, signs, and abnormal clinical and laboratory findings, not
    elsewhere classified": "Malaise and Fatigue" "Chronic Fatigue Syndrome,

    The ICD-10-CM will perpetuate the failure to properly classify this very real, organic illness. ME/CFS
    will remain, at least partially, classified under "Malaise and Fatigue" in the R code area. This vague
    and uncertain classification is detrimental to patients, since it may encourage physicians and
    insurance companies to misdiagnose and classify the illness as psychiatric.

    G93.3 - acknowledges neurological pathologies, viral triggers and the relationship of ME, CFS and
    PVFS. Studies have shown differences between brains of people with CFS, healthy controls and those
    with psychological disorders. These brain changes justify ME/CFS as a disease of the neurological

    This G code enables patients to receive proper diagnosis, treatment, and disability benefits.
    Unfortunately, it is not very well known to physicians and a patient may be coded as having CFS in
    the R code, instead of ME/CFS in the G code.(iv)

    The ICD-10-CM will be used to gather statistics and data for health care utilization, quality review and
    resource allocation. If patients are classified as having CFS under the R code, the breakdown in
    recognition and treatment will continue.
    The ICD-10-CM is coordinated with the Centers for Medicare and Medicaid Services (CMS) and
    electronic record keeping. Improper diagnosis can negatively affect the response of doctors reviewing
    patients' records. (iv)
    Social Security disability programs use the name “CFS.” Many private long-term disability (LTD)
    providers follow the SS guidelines and also use “CFS.” Some LTD plans have two-year limits for
    "mental impairment." A physician using the R code for vague illness of malaise and fatigue, may possibly create, an obstacle to obtaining LTD benefits. A diagnosis of ME under the G code would be
    a definite improvement. The coding issue circles around to the name issue.
    These aspects, “name” and “coding,” are of major importance. Please consider these comments as
    you proceed. Thank you.

    Medline Plus,
    Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AC, Speight N, Vallings R,
    Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik S, Mena I,
    Mikovits JA, Miwa K, Murovska M, Pall ML, Stevens S. (October 2011). "Myalgic encephalomyelitis: International Consensus Criteria.". J
    Intern Med 270 (4): 327–38. doi:10.1111/j.1365-2796.2011.02428.x. PMID 21777306
    Updated U.S. Illness Codes Perpetuate Medical Ignorance of ME/CFS. Massachusetts CFIDS/ME & FM Association, February 24, 2013.
    Proposal to reclassify CFS in the ICD-10-CM and ICD-9-CM, Prepared by Mary Dimmock. Submitted to Medical Classification
    Administrator, National Center for Health Statistics CDC by the Coalition 4 ME/CFS ©2011 July 14, 2011.

    Thank you to PANDORA Org for some content and graphics.
    Wildcat likes this.
  2. Nielk


    Pat LaRossa's video presentation:


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