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ME scientists write open letter to US senators: "We want to research ME but can't get the funding"

Discussion in 'General ME/CFS News' started by Sasha, Aug 18, 2015.

  1. Sasha

    Sasha Fine, thank you

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    ahimsa, Izola, Chezboo and 46 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Izola, moosie, WillowJ and 14 others like this.
  3. Bob

    Bob

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    This is really something. And the timing is great. I can't help feeling that things are beginning to shift. But we must try to bring our community's attention to these advocacy projects. In my opinion, this funding issue is the single most important issue for us right now. We must get behind it.
     
    Izola, moosie, alkt and 14 others like this.
  4. Scarecrow

    Scarecrow Revolting Peasant

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    Wow!

    Does anyone know if #MEAction are planning anything?
     
    Sushi, maryb, Sasha and 2 others like this.
  5. Bob

    Bob

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  6. sarah darwins

    sarah darwins I told you I was ill

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    Double-wow! Now that's what I call a list of signatories. I like the letter, too. Short and to the point. Says it all.
     
    Izola, WillowJ, JaimeS and 8 others like this.
  7. Sasha

    Sasha Fine, thank you

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    I agree - very well written. It could have rambled on and been very negative but it's the opposite. Extremely well done.
     
    JaimeS, Sushi, rosie26 and 6 others like this.
  8. JamBob

    JamBob Senior Member

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    This is great news.

    Would someone be able to explain who Senator Mikulski is and why the scientists have chosen to address the letter to her? Is there a reason to target one single senator over the government as a whole? Does this senator have special powers/influence?

    Cheers
     
    meadowlark, Antares in NYC and Sasha like this.
  9. Sasha

    Sasha Fine, thank you

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    @searcher?
     
  10. msf

    msf Senior Member

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    Very impressive, but I wish they got Lipkin´s signature too - he must be the biggest ´name´, apart from James Watson, involved in ME research at the moment.
     
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  11. Sasha

    Sasha Fine, thank you

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    Well, Ron Davis is pretty damn big and there's a bunch of Nobel Laureates on there.

    Perhaps more will sign up...
     
  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    This is brilliant, just what`s needed. Yey!
     
    Bob and Sasha like this.
  13. leokitten

    leokitten Senior Member

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    Senator Barbara Mikulski is a very senior senator (from Maryland) on the Senate HELP Committee. She used to be the ranking member but I believe since she is retiring in 2018 her Democrat colleague Patty Murray has taken on the role.

    http://www.help.senate.gov/about/members
     
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  14. jimells

    jimells Senior Member

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    Barbara Mikulski is a Democrat senator from Maryland. She is on the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies.

    She has been in Congress since 1977 in both houses, so she knows where the bodies are buried by now.
     
    Last edited by a moderator: Aug 19, 2015
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  15. searcher

    searcher

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    We are giving a copy of the letter to every senator we meet with, but thought it would be useful to have a specific senator mentioned in the letter linked to in the Science article. Mikulski is a key senator for the reasons jimells mentioned, but we want every senator on the HELP committee to get a copy.

    Dr Bateman signed on right after the article was published and we think we will get more signatures this week. Most of the scientists we reached out to were enthusiastic signatories, but I think some wanted to be careful (understandably so) because they get a lot of NIH grants in other areas.
     
    WillowJ, aimossy, JamBob and 13 others like this.
  16. Sasha

    Sasha Fine, thank you

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    That's very understandable, though a shame because the ones who can say, "you fund all my other stuff but not my ME stuff" make a strong case.
     
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  17. searcher

    searcher

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    Thankfully I think those scientists are doing a good job making it clear to Collins et. al that the illness needs studying and that it's absurd that they can't get funding for solid ME research.
     
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  18. ahmo

    ahmo Senior Member

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    How/why did this letter happen?? Maybe I missed a thread about this. Or is the SEID event having a cascade effect?
     
    Valentijn, JaimeS and halcyon like this.
  19. Bob

    Bob

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  20. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Amazing!!!

    I didn't see the link to the letter the first time through the article, and had to very carefully re-read (embarassingly, twice :() to find it.
    I realize this is probably a personal brain-fog issue, but IMO it might be worth promoting the letter on its own in addition to the Science article.
    Ie - link separately on Twitter, Facebook etc

    This is some pretty great fodder for advocacy.
     
    Last edited: Aug 18, 2015

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