1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Next CFSAC meeting June 16-17, 2014

Discussion in 'Upcoming ME/CFS Events' started by Nielk, Apr 24, 2014.

  1. Nielk

    Nielk

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    Elaine Perry updating on CMS.

    ICD-10 implementation date has been moved to Oct. 1, 2015.
  2. Sasha

    Sasha Fine, thank you

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    That's a fair point. I can see both sides of this one.
    dandy1day likes this.
  3. Nielk

    Nielk

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    CMS has huge population data.

    Study found raised risked of non-hodgkins disease for ME/CFS patients.
    Valentijn likes this.
  4. Nielk

    Nielk

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    Andrew was just speaking and got cut off? They didn't give a one minute warning and just cut him off. He was doing great!

    i hope @Andrew that you can post your testimony here for us.
    Valentijn likes this.
  5. NK17

    NK17 Senior Member

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    Once again many thanks to Nielk for reporting.
    I just got up (West Coast) and heard Andrew's speech and the committee apologies for not giving him the 1 minute warning!!!!
    These people are just bureaucrats ...
    Thank you Andrew, you are one of our braves.
    catly, Valentijn and Sasha like this.
  6. GalaxiiGrl

    GalaxiiGrl

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    It boggles my mind that the presenters who are reading directly off of slides about irrelevant topics are given as much time as they want, but when someone has something substantive to contribute, he or she is abruptly cut off mid-sentence. The moderator spends more time asserting/arguing that she cannot allow the speaker one extra minute than it would take to let the speaker finish the thought. This is absurd.
    Sing, Kati, Rrrr and 7 others like this.
  7. Nielk

    Nielk

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    Eileen Holderman gave a very strong emotional testimony outlining the realities of what has been going on at CFSAC in the past few years. She talked about the dismissal and destruction going on. The HHS agenda of redefining CFS as a broad illness. They have acted in bad faith.

    Thank you Eileen for all your work and for serving us so well in your years on the CFSAC committee.
    Sing, Kati, leela and 2 others like this.
  8. Nielk

    Nielk

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  9. Sasha

    Sasha Fine, thank you

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    Argh, wish I'd heard her - I was interrupted by a phone call.
  10. Sasha

    Sasha Fine, thank you

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    Thanks for your summaries, @neilk - huge help!
    Nielk and NK17 like this.
  11. GalaxiiGrl

    GalaxiiGrl

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    It's sad that the concerns, issues and questions that are brought up in the public comments will never actually be directly addressed by CFSAC or NIH. The comments just hang there out in the ether; it's as if they were never even said out loud. How can they be allowed to simply IGNORE all of this testimony?
    Sing, Kati, Keela Too and 3 others like this.
  12. Andrew

    Andrew Senior Member

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    I just sent the following email to CFSAC. It also includes the written and documented part of my testimony.


    Kati, JT1024, medfeb and 4 others like this.
  13. Nielk

    Nielk

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  14. Nielk

    Nielk

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  15. Denise

    Denise Senior Member

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    It was really jolting to listeners when they cut you off Andrew! I am very sorry they did so.
    I am glad you eventually got the extra minute to finish.
    dandy1day and Valentijn like this.
  16. Sasha

    Sasha Fine, thank you

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    Kati likes this.
  17. NK17

    NK17 Senior Member

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    Thank you for your testimony Andrew!
    You did great, even if they cut you off (and then gave you the 1 minute after).

    I know how much it costs us to write, research and speak and you have done all that so well.

    Please take care of yourself.
    Rrrr and Sasha like this.
  18. Nielk

    Nielk

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    I just have to voice here that I don't appreciate Dr. Lee's giving Eileen such a hard humiliating time when she requested another one minute to speak. Eileen gave three years of service to CFSAC. This bullying behavior has got to stop.
    Sing, Kati, JT1024 and 4 others like this.
  19. Andrew

    Andrew Senior Member

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    I'm lucky I even knew about my extra minute. I was so sick this morning I got back into bed after speaking, and thought I had closed my cell phone. But I kept hearing something and noticed it was still open. So I picked it up to see if i was still connected. And just in time to hear about the extra minute.

    The warning has nothing to do with what happened. I was not given three minutes. And I must add that even though I was able to eventually finish my talk, interrupting me wrecked the impact of what I said.
    JT1024, SOC, RL_sparky and 6 others like this.
  20. Nielk

    Nielk

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    I am so sorry this happened to you, Andrew. I appreciate you giving your testimony even though you were so sick. I think they looked like fools - cutting you off like that. You gave a very strong testimony.
    Kati, Rrrr, Keela Too and 1 other person like this.

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