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A Entire State Goes ME/CFS: Nevada Congressional Breakthrough - the First of Many?

Discussion in 'Action Alerts and Advocacy' started by Cort, Sep 12, 2017.

  1. Cort

    Cort Phoenix Rising Founder

    Nevada Goes "ME"

    An entire state goes "ME". That's never to my knowledge happened before.

    Courtney Miller of Simmaron, Emily Taylor of the Solve ME/CFS Initiative, MEAction and the USAWG worked together to enroll the entire Nevada Congressional delegation to put its total support behind increased funding for ME/CFS.

    Persistence Works


    Sigs 1 Nevada.JPG
    This is notable not just because it's never been done before but because for years, patients in Northern Nevada sought help from Congressman Amodei and Senator Heller with little success. This is the story of persistence and success. Hopefully we'll be seeing more of this as the attitude towards chronic fatigue syndrome (ME/CFS) shifts.

    Courtney and Bob Miller have been advocating for ME/CFS for many years but when Emily came up with the rather audacious plan to get the entire state delegation on board they were energized.

    After the elections in Nevada, Courtney Miller and a group of patients recommitted to taking a sustained approach. Not willing to let the decisions of the past stop them, Courtney met the staff of the Congressman and her Senators after the Women's March in Washington. At that point Amodei got interested in ways to improve the federal agencies' response to the disease.

    Sigs 2a Nevada.JPG
    Then, in a Spring Town Hall meeting Courtney got up to the microphone and publicly asked Sen. Catherine Cortez Masto for her support. With that Sen. Catherine Cortez Masto's staff got involved and she joined the effort.

    Next during the first Lobby Day in ten years (thanks to SolveMECFS and MEAction) some patients from Nevada met with Cong. Amodei himself and the Senators. Emily, Sonya, Courtney and others created a draft delegation letter (see attachment). In June Courtney returned to DC and visited the office of every member of the NV delegation. This time the response was enthusiastic; Congressman Amodei agreed to sponsor the letter and set a deadline.

    Finally last week, Emily from Solve ME/CFS Initiative and Courtney hit the phones, Anita - the go to person for patients in Incline Village - urged Nevada patients to send emails, and Emily set up an SolveMECFS Nevada action alert so that more Nevadans could urge their reps to sign on. (The SMCI has an automated and easy way to contact our reps.) By Friday, the entire Nevada delegation agreed to push Director Collins for more funding.

    The State Delegation Game

    The game now is to get entire state delegations to sign on. Obviously it's going to be harder with bigger states (although in conversation Emily mentioned the "big apple") Besides everything else getting everyone in a state delegation on board is a great game to play. It sends a powerful message when an entire delegation comes together like that.

    I asked Emily what was next:
    Who's next? Now that Nevada has proven it can be done which state is next? If you want to your state to be the next to go all "ME" email Emily Taylor at ETaylor@solvecfs.org and let her know.
     

    Attached Files:

    Last edited: Sep 12, 2017
    Murph, Dolphin, Azriel and 26 others like this.
  2. Rick Sanchez

    Rick Sanchez

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    Emily is such an inspiration when it comes to ME/CFS advocacy.
     
    Missense likes this.
  3. Cort

    Cort Phoenix Rising Founder

    Isn't she? I just love that she's involved full time....She's got several letters congressional letters done, she's got NOW involved, we have the first state delegation ever to get behind ME/CFS....
     
    Last edited: Sep 12, 2017
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  4. Jesse2233

    Jesse2233 Senior Member

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    What do you think the next state will be @Cort?
     
  5. Cort

    Cort Phoenix Rising Founder

    That's a great question. I would guess a smaller one= a state with active advocacy maybe..... Maybe Mass? I think they have a pretty active advocacy effort there (??).
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    I can see Mass getting on board w/ Anthony Komaroff and the Massachusetts CFIDS Association leading the charge.

    Would be great if California joined as well given the heavy involvement at Stanford, but I suppose that would be a lot of delegates from very different regions to bring into unison
     
    lafarfelue likes this.
  7. Cort

    Cort Phoenix Rising Founder

    California would be the cat's meow.....10% of Congressional delegates I read some where.
     
    Jesse2233 likes this.

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