Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Millions Missing Coverage

Discussion in 'Millions Missing Campaign' started by Never Give Up, May 24, 2016.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    The millions missing articles have begun.

    http://www.mercurynews.com/opinion/...ndrome-victims-2-1-million?source=infinite-up

    Anyone care to respond to this comment, @Sasha?

    ""My daughter, age 21, and the other 2.5 million Americans suffering from the neuro-immune disorder called M.E./CFS (myalgic encephalomyelitis/chronic fatigue syndrome), have an abundance of grit."
    I have no doubt this parent is telling us what difficulties his daughter has..However, how does he kNOW she has an immune disorder..what physical evidence is there? In what way is society at large supposed to rally behind something for which there is a "diagnosis"...but not a cure. Just what are "we" supposed to do for these people? What is it we are going to be "educated" about?"
     
    duncan, Effi and Bob like this.
  2. Sasha

    Sasha Fine, thank you

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    Anyone/everyone can respond to these comments - or, better still, talk over their heads to reasonable people.

    Think about what ACTION we want - donations to END ME/CFS, signatures to @marygelpi's petition...

    Here's my article on how to do it:

    http://phoenixrising.me/how-to-comment-on-online-news-stories

    I'm not doing too well today so not going to be able to do any of this myself.
     
    Kati, duncan, Never Give Up and 4 others like this.
  3. marygelpi

    marygelpi

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    ""My daughter, age 21, and the other 2.5 million Americans suffering from the neuro-immune disorder called M.E./CFS (myalgic encephalomyelitis/chronic fatigue syndrome), have an abundance of grit."
    I have no doubt this parent is telling us what difficulties his daughter has..However, how does he kNOW she has an immune disorder..what physical evidence is there? In what way is society at large supposed to rally behind something for which there is a "diagnosis"...but not a cure. Just what are "we" supposed to do for these people? What is it we are going to be "educated" about?"[/QUOTE]



    We KNOW his daughter has a neuroimmune disorder because the specialists and virologists and scientists who have been working on ME/CFS for decades have designated it as that. I'm surprised to hear you question why "society at large" should rally behind a disease with no cure. That's the whole point. That's EXACTLY why we rally behind a disease and pour research funding into it, so that we can find treatments and an eventual cure. The burden of the disease far outweighs the money we are putting into curing it. (Billions lost every year in US due to loss of productivity, i.e.. People having to leave work because they are too sick) I don't remember hearing anyone say "why would we pour money into cancer research? There's no cure!" Same for malaria. Or the Zika virus. Or basically all infectious diseases of which the NIH is still urgently researching. Not having a great understanding for the disease is no reason not to dive in deeper to find its cause. Our lacking knowledge is a direct result of exactly what we're asking for: research funding. Because there has been so little, there has been an insane lack of progress the last THREE decades, and so we're finally rallying together to try to change that. We are sick people who actually want to get back to work, to our families, to our life before illness. I hope you can understand that.. It's been hard being sick since age nine and having zero hope of a cure because the gov't has chosen not to show interest in my disease. Does that make sense?
     
    Kati, duncan, Cornishbird and 8 others like this.
  4. marygelpi

    marygelpi

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  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  6. *GG*

    *GG* Senior Member

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    Concord, NH
  7. Sushi

    Sushi Senior Member Albuquerque

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    STAT is a health and science publication of the Boston Globe newspaper.
    Rivka is a member here--RivkaRivka.
     
    AndyPandy, Dolphin, duncan and 9 others like this.
  8. RivkaRivka

    RivkaRivka Senior Member

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    Thanks, @Sushi

    If anyone feels up to leaving a comment on my article, that is much appreciated.

    STAT is a well respected publication and if we can get a good response they may well take more essays or articles on it. the editor was smart and sympathetic.
     
    KristenSF, Kati, Justin30 and 16 others like this.
  9. BurnA

    BurnA Senior Member

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    chronic fatigue is in inverted commas.
    There are several uses for such, one of them being:


    • (also known as scare quotes) to draw attention to an unusual, ironic, or arguably inaccurate use:
    Thank you for that unhelpful 'advice'.
    His 'car' was hardly road-worthy at all.
     
    duncan, Valentijn, JaimeS and 3 others like this.
  10. marygelpi

    marygelpi

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    @Rivka
    Dude, that article was great. Thank you for writing it and helping shed some light. Just the fact that your two other roommates recovered but for you it triggered something major, I don't know, it seems to say something about possible genetic predispositions for it. Otherwise, all three of you would be in your state, you know?

    Also, I commented and I admit, I kind of fed the troll. I just couldn't allow her ridiculous comment to sit there unresponded to after such an awesome piece. So I responded.. But I helped inform her and used some of @sashas tactics! I know it's not going to change her mind but I couldn't help it, I'm so sick of comments like that.

    Anyway, GREAT JOB! it was really well done.
     
    Comet, RivkaRivka, JaimeS and 2 others like this.
  11. pamaxon

    pamaxon

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    http://www.jdnews.com/news/20160523/disabled-former-teacher-campaigns-for-disease-research
     
    Last edited by a moderator: May 24, 2016
  12. RivkaRivka

    RivkaRivka Senior Member

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    Comet, mango and Bob like this.
  13. RivkaRivka

    RivkaRivka Senior Member

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  14. Sushi

    Sushi Senior Member Albuquerque

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    This has been reprinted in Business Insider. @RivkaRivka
     
  15. Comet

    Comet I'm Not Imaginary

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    Jennifer J likes this.

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