The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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NPR Boston affiliate: "Often Bedridden For 25 Years, Advocate Welcomes NIH Move"

Discussion in 'General ME/CFS News' started by RivkaRivka, Nov 2, 2015.

  1. RivkaRivka

    RivkaRivka Senior Member

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    Hi all. Here is an essay I managed to write last week, after the NIH news:

    http://commonhealth.wbur.org/2015/11/nih-chronic-fatigue-syndrome

    I wrote the essay about the government's ground breaking announcement of help for ME/CFS. It is on the website for National Public Radio's Boston affiliate, WBUR. It is accompanied by a 7 minute radio segment in which the reporter interviewed both me and investigative journalist David Tuller -- otherwise known as My Hero -- for his smooth take down of Goliath, i.e. the PACE study that trivializes this serious disease.

    The 7 minute radio piece airs today sometime between 3-4 pm ET on WBUR.org, likely at 3:15 or 3:20 pm, during WBUR's 1 hour "Radio Boston" show. It can be heard live on the radio or online at WBUR.org. And after the show is over, the 7 minute radio segment will be linked next to the essay.

    Please spread the news. And add a comment, if you are able, under the essay on the website. They are considering doing more on ME/CFS, on their more widely heard *national* show, and showing reader interest could tip the scales.

    Warmly,
    Rivka
     
    Aurator, TigerLilea, rebar and 35 others like this.
  2. RivkaRivka

    RivkaRivka Senior Member

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    @viggster i made sure to include a link to your washington post piece in the essay
     
    rebar, searcher, ahimsa and 2 others like this.
  3. Vasha

    Vasha Senior Member

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    @RivkaRivka - Wow; this is terrific! A terrific, easy-to-understand description of what PWME deal with, excellent tracing of the NIH's history and shift, and an eloquent story.

    Thank you!
     
  4. Sasha

    Sasha Fine, thank you

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    Great article, @RivkaRivka!

    I hope you don't mind that I left a comment about the PACE petition.
     
  5. RivkaRivka

    RivkaRivka Senior Member

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    thank you @Vasha, for your great comments and support. of course the process of writing this and finding it a home has utterly slammed me. i forgot to write how shaky i get with any energy output. like right now. :)
     
    Sasha likes this.
  6. RivkaRivka

    RivkaRivka Senior Member

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    @shasha
    oooh, so smart! thank you!
     
    Never Give Up, *GG* and Sasha like this.
  7. Vasha

    Vasha Senior Member

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    Me too, @RivkaRivka --the thinking, the concentration... the crash.
    Thanks so much for taking it on on behalf of all of us. :) {flowers}
     
    Jennifer J and RivkaRivka like this.
  8. OneWaySurvival

    OneWaySurvival Senior Member

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    Yes, Rivka. I know how much this costs you. Thank you so much for your excellent advocacy here! (which builds on past efforts like your solo demonstration a few years ago) You have inspired many, including me, that we can all make a difference - even in solo - but smart advocacy. Even more so when we team up.

    The struggle and crash from these moments are sort of a personal donation to the community. But it's all finally paying off!
     
  9. RivkaRivka

    RivkaRivka Senior Member

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    thank you @OneWaySurvival for your support and kind words! it took me 6 wks to recover from that one woman demo in front of HHS in wash dc. ha!

    i'm going to go listen to the interview now. david tuller will be on it too, just a bit. it should start at 3:15 pm ET, which is just about 10 minutes. you can listen at WBUR.org, at their LISTEN LIVE button. it is only 7 min long.

    xxoo
    rivka
     
    ukxmrv and Keela Too like this.
  10. OneWaySurvival

    OneWaySurvival Senior Member

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    @RivkaRivka I'm listening now! It was easy to find all this at WBUR.org
     
    ukxmrv likes this.
  11. Keela Too

    Keela Too Sally Burch

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    Well done Rivika Great article
     
    Never Give Up and RivkaRivka like this.
  12. Keela Too

    Keela Too Sally Burch

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    Listening.. this sounds good!
     
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  13. OneWaySurvival

    OneWaySurvival Senior Member

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    That Boston NPR piece was great!

    I think people in our media (and general public in some cases) are finally starting to "get it"!
     
  14. Sasha

    Sasha Fine, thank you

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    Argh, missed it! Was it recorded?
     
  15. viggster

    viggster Senior Member

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    Thank you! So glad it found a good home.
     
    RivkaRivka likes this.
  16. jimells

    jimells Senior Member

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    northern Maine
    Will this segment be on PRI's "The World" radio program?
     
  17. Sushi

    Sushi Senior Member Albuquerque

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    I listened and it was great! Congratulations RivkaRivka:thumbsup:
     
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  18. Esther12

    Esther12 Senior Member

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    There's so much going on right now that I'm not able to keep up. Thanks for your work!
     
    Jennifer J, ukxmrv and RivkaRivka like this.
  19. RivkaRivka

    RivkaRivka Senior Member

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    nope. but it will be in an audio clip next to the essay. soon, i hope.
     
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  20. RivkaRivka

    RivkaRivka Senior Member

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    Thank YOU @viggster for your great work!
     
    viggster and OneWaySurvival like this.

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