Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME Action - 21st Century Cures Act - New Action Alert - Help needed AK, KS, KY, LA, MI, NJ, WY

Discussion in 'General ME/CFS News' started by Bob, Aug 17, 2015.

  1. Bob

    Bob

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    ME Action - LOBBY CONGRESS FOR NIH FUNDING - New Action Alert

    Help us get ME in the 21st Century Cures Act.

    August 17, 2015
    http://www.meaction.net/2015/08/17/lobby-congress-for-nih-funding/

    "A quick-strike lobbying campaign to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health."

     
    Last edited: Aug 17, 2015
    catly, Valentijn, Gemini and 6 others like this.
  2. aimossy

    aimossy Senior Member

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    This seems a big opportunity... hope people get onto helping with this.
     
    Scarecrow likes this.
  3. Sasha

    Sasha Fine, thank you

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    Oops - didn't see your post and I just posted a new thread (which I've just asked the mods to delete).

    Could I ask you, @Bob, to change your title to something like:

    #MEAction quick-strike 21st century cures campaign: help needed AK, KS, KY, LA, MI, NJ, WY

    This is a new action today - not the funding equality petition that we've all been signing since May 12th, and I think it's going to confuse people if we don't make it really clear.

    http://www.meaction.net/2015/08/17/lobby-congress-for-nih-funding/

    Get cracking, if you live in those states and can help - this is an unusual and exciting opportunity where we seem to have a foot in the door already - #MEAction have retained a consultant so there are boots on the ground.
     
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  4. Sasha

    Sasha Fine, thank you

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    aimossy and Bob like this.
  5. Rooney

    Rooney Senior Member

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    Michigan and New Jersey are two of our most populous states, so recruitment there should be easy.
    I'm wondering how the other states are doing recruiting volunteers.
     
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  6. catly

    catly Senior Member

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    All I can say is YIPEE! I've been following 21st century cures for over a year now saying to myself--this is the perfect opportunity for ME, ME/CFS, SEID--whatever you want to call it--where are the advocates? I'm so glad someone is finally taking the lead. Unfortunately I don't live in any of the key states but you can count me in for other support!
     
    Sasha and Bob like this.
  7. searcher

    searcher

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    We got a great response from a patient in Louisiana. The main challenge in Michigan and New Jersey is finding a patient or ally in the specific House districts, whereas the other states are not limited since we are contacting Senators. That said, we should be ok with people from nearby.

    If only we could find someone from Alaska... Although I'd prefer to find out that everyone is healthy there :)
     
    Valentijn, Sasha, Bob and 1 other person like this.
  8. Rooney

    Rooney Senior Member

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    The Senate subcommittee Chair on Primary Health is from Alaska, Sen. Michael Enzi. That is the most influential office/has most power to write us into the bill. I have the impression these key Senate offices are receptive to us.
    Question? Couldn't one or two of our well-spoken leaders get a phone appointment with Enzi's Legislative Aid on this bill no matter their state?
     
  9. leokitten

    leokitten Senior Member

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    I was asked by ME Action to lobby Sen. Mikulski (from my home state Maryland). The lobbyist and I decided to go to the Capitol in person to increase our impact and we met with one of Mikulski's legislative aides. It went OK, her aide was very polite and talked with us for 45 min. I gave her some background on the disease as well as my personal story and the lobbyist and I clearly laid out ME Action's two requests.

    Mikulski's aide told us that since the Senate is not just voting on or modifying the House's 21st Century Cures Act but developing their own then this process could take until the end of the year or even longer. I certainly hope they remember this effort when they deliberate the legislation in committee during this session.
     
    Never Give Up, Kyla, Bob and 3 others like this.

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