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Live feed of 12/13 January CFSAC Meeting

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Jan 11, 2017.

  1. shannah

    shannah Senior Member

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    Pathetic - Don't they think we know how to divide?

    Anybody know what the reaction in the room is - from Carol or others?
     
    NexusOwl and Rrrr like this.
  2. mfairma

    mfairma Senior Member

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    No one. Just me making a joke about how 30 million seems kind of impressive, but then isn't when spread over 5 years.
     
    Zombie_Lurker, BurnA and Rrrr like this.
  3. Rrrr

    Rrrr Senior Member

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    Assistant Sec. of HHS DeSalvo sounds committed to us! So sad she is leaving. Thank you to the ME activists who met with her!
     
    usedtobeperkytina likes this.
  4. Nielk

    Nielk

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  5. Tom Kindlon

    Tom Kindlon Senior Member

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    Nielk likes this.
  6. Sasha

    Sasha Fine, thank you

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    UK
    Argh... I don't like the idea of being obliged to add WebEx to my computer (?) to listen to this thing - it says WebEx can read and change all your data on the websites you visit. I don't know what that means but I don't like the sound of it. I wish they'd put this up on YouTube.
     
  7. Nielk

    Nielk

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    Eileen Holderman's CFSAC comment - https://relatingtome.net/2017/01/13/eileen-holderman-cfsac-comment-january-13-2017/

    Excerpt:

     
    Last edited: Jan 13, 2017
    BurnA, Jennifer J, actup and 2 others like this.
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    I want to share how important these public comments are. This is for a couple of reasons:
    1. For those who serve on the committee, and ex officios, who know the disease, they may get frustrated with the challenges in getting some progress. I remember one committee member, when his term ended, said he often thought about quitting the committee. Yet, hearing the desperate stories of what it's like for the patients kept him on, knowing the committee is the only way to get the government's ear.
    2. There are always new people coming on as ex officios or committee members. They need to be educated. It may be a slow way to do it, but when an individual has any interest or connection to the disease, they need to be informed of what the disease is and its impact. Only patients can describe this.
     
    mango, Jennifer J, actup and 4 others like this.
  9. AndyPR

    AndyPR Senior Member

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