Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause
Sasha reports on Llewellyn King’s campaign to find a lone Congress member to do the right thing ...
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May 12: Jen Brea Thrive Show Special

Discussion in 'General ME/CFS News' started by Firestormm, May 11, 2014.

  1. Cheshire

    Cheshire Senior Member

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    So stimulating!
     
  2. Nielk

    Nielk

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    Yes, I agree. It was so candid, full of information and actually uplifting. I hope many of you have been able to listen in.
     
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  3. Firestormm

    Firestormm Guest

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    I enjoyed that. Nice format. Almost fell asleep. I shall have to have a word with Jen about talking too much ROFL (Don't mean it Jen!) :)

    Excellent job everyone :)
     
  4. Sasha

    Sasha Fine, thank you

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    Yes, that was great - very cheering to watch such an 'A' team discussing the possibilities. I was interested in what Lenny Jason was saying about how the internet could be used to come up with a good consensus name to replace 'CFS'. He'd be a great person to do that.
     
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  5. caledonia

    caledonia

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    Great show. I took lots of notes. I'm still not convinced we should be asking for federal research money while the definition is still screwed up.

    I'm confused by Llewellyn's concept of a "single person" in Washington. Is he suggesting we hire a lobbyist or get a new Congressperson to adopt us as their pet project? A lobbyist costs beaucoup $$$$$. Or do we have to hire a lobbyist to talk to the Congress people to identify which one may want to adopt us? Llewellyn said the window of opportunity is at the next election, which is Nov. 4, 2014, so we have some time.

    Given unlimited resources, however, I would try every approach mentioned, to see what sticks. But as things stand, I don't know if we can hire a lobbyist and fund Lipkin's research all at the same time.

    Another idea I had was to possibly share or borrow a lobbyist between a coalition of similar disease groups. This would make it more cost effective for several smaller groups. We might be able to pull that off.
     
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  6. Nielk

    Nielk

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    I like that idea; sharing a lobbyist with similar diseases if we can't afford our own.
     
  7. Nielk

    Nielk

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    If you missed it, you can watch it here
     
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  8. Esther12

    Esther12 Senior Member

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    Ta. Lots of stuff going on today - I'm so aware of ME!!
     
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  9. Bob

    Bob

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  10. Bob

    Bob

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    He's written about this recently:
    http://forums.phoenixrising.me/inde...ngs-me-cfs-manifesto.29979/page-2#post-462470

    If I remember correctly, he's suggesting that the ME/CFS community crowdfund to pay for a professional lobbyist to be situated in Washington for a year. Or longer if we can raise the funds.
     
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    who misunderstood the term 'hangout'. :rofl:
     
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  12. caledonia

    caledonia

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    What he said in his ME/CFS Alert video, what he wrote in the Manifesto, and what he said on the Thrive show are all slightly different things. Maybe he keeps adjusting his thoughts as he goes along.
     
    Bob likes this.
  13. Ruthie24

    Ruthie24 Senior Member

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    My M-I-L was a very successful volunteer lobbyist for a non-profit locally. After reading some of my facebook posts yesterday, she came out of her room last night to say, "You really need someone on the ground who can figure out who these congressional people listen to. It's not just talking to them, it's really connecting to the people that THEY listen to that's important and will get you somewhere. And having paid people to do it is critical because once you do that, they will make sure you keep getting money. Obviously those of you who are sick aren't in any position to be doing all of this lobbying."

    Sounds like Llewellyn King is on the right track. Maybe we need to shift our focus on crowdfunding for now and get it moved toward getting a lobbyist in DC. Once we start making some inroads there, we might not have to keep crowdfunding all these individual research projects for places like Columbia, Stanford, OMI, etc. Even my cardio doc was laughing in disbelief when I mentioned having to crowdfund for Lipkin.
     
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