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Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

Discussion in 'Phoenix Rising Articles' started by Sasha, Jun 16, 2015.

  1. Denise

    Denise Senior Member

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    I had not heard about an SMCI/Fairchild briefing in Congress - I had only heard that they were supposed to meet with Tony Fauci. I wish we were provided details of what transpired in these meetings.
     
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  2. beaker

    beaker ME/cfs 1986

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    I think it was the meeting she was referring to. No testimony to Congress when it was in session. But there were members of Congress there.

    ETA LINK about meeting. It was called a briefing. Hence the mix up.
     
    Last edited: Jun 27, 2015
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  3. catly

    catly Senior Member

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    Morgan Fairchild could be the "celebrity" advocate we've been hoping for. In addition to having had MECFS, she reportedly has a deep interest in virology and is known as a major AIDS activist--I think she did testify in front of Congress on AIDS.

    She seems to have taken an interest in helping MECFS patients--supposedly, she "knows" Fauci at NIH and was supposed to have met with him after then IOM report.

    She may be able to get us some congressional traction and/or attention with NIH.

    NOTE: I'm writing all of this from memory so fair warning that I may be recalling incorrectly.

    But regardless, it would be great if PWME reach out to her to thank her and encourage further involvement.

    As for my congress people and my rep in NY--I give up on them and won't be voting for them in the future, for any office.
     
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  4. catly

    catly Senior Member

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    @beaker Thanks for retweeting--I retweeted all of you tweets:)
     
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  5. Liz Willow

    Liz Willow

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    Attendance at the briefing was by invitation only and the location was kept secret.:cautious:
     
    Last edited: Jun 28, 2015
  6. Denise

    Denise Senior Member

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    I goofed and I apologize.
    I have been reminded that the "congressional briefing" was the invitation-only DC briefing held in March that I actually watched the livestream of.
    I think what happened is that I read "congressional briefing" and in my mind pictured a big meeting with many congressional officials and staffers rather than the SMCI meeting that had just a few staffers in attendance.

    (Has anyone heard what transpired in the meeting with Fauci?)
     
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  7. catly

    catly Senior Member

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    I haven't heard anything about the meeting with Fauci, would have been nice to get some feedback.
     
  8. Nielk

    Nielk

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    MEadvocacy.org has created an easy one click letter that US citizens can use to sen llewellyn King's blog directly to their congressional representatives. Just input your name and address. Three letters will be automatically generated and e-mailed to your two senators and house representative.

    Let's try to reach every member of congress!

    http://www.meadvocacy.org/tell_congress_we_need_an_me_champion
     
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  9. Sasha

    Sasha Fine, thank you

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    Sushi and Bob like this.
  10. has anyone tried flagging down any of the politicians whoring for votes this cycle? seem to remember someone getting a good question in at a townhall some years back. spoke to a congressional aide years ago and apparently no one reads emails either although x number on a specific subject will raise awareness.
     

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