Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Time for Unrest--advocacy challenge, one patient's response

Discussion in 'Advocacy Projects' started by Sushi, Nov 2, 2017.

  1. Sushi

    Sushi Senior Member Albuquerque

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    Albuquerque
    Here is Laura Vitale's response:
     
  2. lnester7

    lnester7 Seven

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    ME code does not exist in the US code so all plp
    Would be without diagnosis.
    If you wnat that to change. First advocacy for the ME code to be included in the uS code and at same time remove the Cfs code. But cannot remove until you add the ME one!!!
     
    Zombie_Lurker and Sushi like this.
  3. jstash

    jstash Senior Member

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    The "ME is not CFS" thing clouds the narrative, in my opinion.

    CFS is a terrible name and one that doesn't accurately portray our symptoms. But it's unbelievably confusing to an outsider to say "I do not have CFS I have ME" when they are known as the same thing. In my country, virtually everyone is diagnosed as having "CFS".

    It's a terrible name, but I feel like more advocacy effort should be spent elsewhere. I personally couldn't care if it was called Stay In Bed All Day Because Holy Shit I Feel Ill Illness, if advocacy gained enough ground to find a cure.
     
  4. NelliePledge

    NelliePledge plodder

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    I found the music and the volume of information meant information overload couldn't take it in. Is the audience me community or general public cos I think this would lose the public even quicker than it lost me.

    i understand the point about the name I use ME as much as possible but most people have never heard of it
     
    Skycloud and bspg like this.
  5. Ember

    Ember Senior Member

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    ICD-10-CM came into effect on October 1, 2015. This post shows the details. And here it's explained that "the ICD-10-CM officially states that ME and CFS are two separate diseases, classified in two different categories, each mutually exclusive of each other."
     
    lnester7 likes this.

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