The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Sign the petition for rejection of change of name from ME to SEID

Discussion in 'Petitions' started by Nielk, Mar 15, 2015.

  1. Nielk

    Nielk

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    ME will exist in the US ICD-10 code as of october 2015.
    CFS will remain as it has been coded
    SEID will get it's own coding but probably not until 2016

    SEID or the IOM criteria was created for diagnostic criteria, not research criteria

    As far as what disease is SEID replacing, it is anyone's guess. It was not clarified in the IOM report.
    The report was a study on ME/CFS so I am assuming that SEID is replacing ME/CFS - whatever that means.
     
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  2. Nielk

    Nielk

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    The petition has reached 500 signatures point. They are trying to reach 1,000 now.
     
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  3. leela

    leela Slow But Hopeful

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    Couchland, USA
    My neuro, who refuses to use CFS or CFIDS uses the code 323.9 which is "chronic encephalitis, myeltitis and encephalomyelitis" to which she adds the code/Dx for dysautonomia of the nervous system.
    I don't need the "myalgic" because quite frankly I think it goes without saying that that chronic triad is painful enough :confused::ill:

    I only just learned this last month, which makes me kind of mad, because if this Dx/code exists in the US, why have we been saddled and
    manhandled by all this bullshit for so long?
     
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  4. halcyon

    halcyon Senior Member

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    ME didn't exist in the ICD-9-CM.
     
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  5. leela

    leela Slow But Hopeful

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    @halcyon Are you saying the code I listed didn't exist until recently? I am an ignoramus on this topic.

    ETA: that Dx appears not to be for "ME" but for the inflammatory conditions of the brain from which I suffer and for which I have MRI evidence.
     
  6. Nielk

    Nielk

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    I don't know. I also heard that Mary Schweitzer has been diagnosed with M.E. in the U.S.
    My understanding is that starting November 2015, Myalgic Encephalomyelitis will have a US ICD-10 code in Disorder of neurological system G93.3.
     
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  7. halcyon

    halcyon Senior Member

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    No, sorry. The ME G93.3 code didn't exist in ICD-9-CM, the current coding in use in the USA. It only had CFS at 780.71. The ICD-10-CM, that comes out later this year, contains both ME at G93.3 and CFS at R53.82. I'm not sure what the equivalent code would be in the ICD-10-CM for your 323.9 code. Looks like it would be G04.9 Encephalitis, myelitis and encephalomyelitis, unspecified.

    As far as I know the code you listed hasn't been widely used for ME or CFS at all in the US.
     
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  8. leela

    leela Slow But Hopeful

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    Seems silly that it hasn't.
     
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  9. lnester7

    lnester7 Seven

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    I actually meet Both criteria. How do I know if I am SEID or ME??? both?? By the way ALso have POTs diagnosed now, And NK cell dysfunction codes.
     
  10. August59

    August59 Daughters High School Graduation

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    The notes from my CFS doctor has always listed my diagnosis in my notes as:
    1) Myalgic Encephalopathy
    2) Chronic Fatigue Syndrome

    I'm not sure if it had something to do with severe myalgic pain even with very strong pain meds and hydrocortisone (cortisol labs were normal at this time).

    However, on my paperwork for insurance the diagnosis code was always 780.71 plus a couple of others.
     
  11. Dolphin

    Dolphin Senior Member

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    From a yahoogroup post (not mine) in reply to a circular about the petition:

     
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