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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Are you outraged by the last situation in ME - then act now.

Discussion in 'General ME/CFS News' started by Tuha, Nov 5, 2016.

  1. Tuha

    Tuha Senior Member

    Are you outraged and disgusted by the last situation in ME? I just made this appel on many ME facebook pages. If you like it just join it, share it and distribute it widely. We need something positive, we need positive changes we need to act immediately. My post:

    Outraged and disgusted by ridiculous BBC articles, never-ending psychiatrists' denials of ME/CFS, Crawley´s pretending to help the ME community, ME-denialist Shorter´s NIH invitation? Then join other patients and donate to REAL ME/CFS research.

    Only biomedical ME research can move us through this difficult period and fight the ME/CFS denialists. #realMEresearch

    If you don't know where to donate, here are just some options of really great ME/ CFS research groups:
    Lipkin & Hornig's microbiome/immunity/"big data" ME/CFS MONSTER STUDY:

    Open Medicine Foundation's End ME/CFS Project:

    Invest in ME research's Center of Excellence:

    It's time to do something positive!
    Neunistiva, Hutan, Mel9 and 17 others like this.
  2. ash0787

    ash0787 Senior Member

    Ideally what you would do here is try to spread that outrage to the general public, maybe people that have never heard of me/cfs before but when they read about it they get angry, by distributing the story widely enough and framing it in the right way, now would probably be a good time to do that because you have the evidence and the backing of researchers plus a bunch of articles in the press recently highlighting their corruption
    Neunistiva, picante and Countrygirl like this.
  3. Tuha

    Tuha Senior Member

    yeah, it´s up to patients now to spread the worl not only in ME community but also outside. It´s really easy - all my friends and family know about and some of them support ME research already
    Dolphin and Comet like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Given the state of the world it would be good to have a broad, loose alliance with other disadvantaged groups eg poverty, disabled, minority, prison advocacy groups where there can be mutual support on areas of common concern
    Neunistiva and picante like this.
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    We should be really really up in arms that they are going to use KIDS in ME/cfs trials that have failed in adults. If anything gets general public up in arms is child abuse and things done unfairly to children. I do not want children to be used as guinea pigs by these people who have and still do treat us terribly, lie etc for therapy which some of us have found to be harmful.
    Jan likes this.

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