The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Congressional Advocacy Push -- Can you help?

Discussion in 'Advocacy Projects' started by JaimeS, Aug 25, 2016.

  1. JaimeS

    JaimeS Senior Member

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    Think I finally got the documents to the right person...
     
  2. Mary

    Mary Forum Support Assistant

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    Actually, I think both e-mailing AND calling are best. e.g., I called and e-mailed last Friday, received no response, forgot about it until today, so I called again today and left another message with another aide, and re-sent the e-mail to the legislative aide (I think my phone call alerted him to look for the e-mail), and the legislative aide responded to my e-mail and thanked me for following up, and said he will get back to me.

    The big news is, he said in his e-mail that the deadline is extended for a week --
     
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  3. JaimeS

    JaimeS Senior Member

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    Who said so?
     
  4. Mary

    Mary Forum Support Assistant

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    Adam Brooks, who is the legislative health aide for Rep. Steve Knight (25th District, California). His e-mail is adam.brooks@mail.house.gov, the Washington D.C. phone is (202) 225-1956
     
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  5. JaimeS

    JaimeS Senior Member

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    I saw the massive email about it, now! (Whew!) We'll get a few more, now, I think...

    I also made a plain text version of the email blast. Hopefully that'll make it easier on newcomers:

     
  6. Silencio

    Silencio Senior Member

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    We're up to 25 signatures!! If you haven't yet, please take the time to email and then call the health legislative aide for your House Rep and ask them to sign on. Esp if your Rep is a republican as there are no Republicans signed yet!
     
  7. ahimsa

    ahimsa Rarely on PR now

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    Thanks for the update!
     
  8. Silencio

    Silencio Senior Member

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    URGENT: If you live in Arizona, or have friends or family there, we need your help in these zip codes for our Congressional push!

    We are close to getting Rep. Martha McSally to sign, but need more constituents to put the pressure on. She could be the catalyst to secure signatures from 10 other Republican Representatives.

    Contact her Legislative Director Pace McMullan at:
    (202) 225-2542
    Pace.McMullan@mail.house.gov

    Use this script:
    http://www.meaction.net/…/u…/2016/08/Script-and-How-To-1.pdf
    Plain text for email: http://bit.ly/2c6xsA3
     

    Attached Files:

  9. Silencio

    Silencio Senior Member

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    Sharing this message for patients in Arizona, or who have friends and family there to take part in the congressional push:

    We have major support from the Republican Party, but McSally is a lynchpin for ME efforts in the House of Representatives. Even if you've already called, PLEASE CALL AGAIN to McSally's office at (202) 225-2542. Ask the receptionist, "What is the status of Congresswoman McSally's support for the Lofgren-Eshoo letter on ME/CFS? I urge her to sign." If you get her voice mail, just leave your name with that message on the recording. You can also email Pace.McMullan@mail.house.gov. THANK YOU!!!
     
  10. ahimsa

    ahimsa Rarely on PR now

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    I wish I knew someone who lived in Arizona but I can't think of anyone.

    Meanwhile, I've attached a new fact sheet by SolveCFS that was sent out via email. (PDF format) It's another tool that can be used when contacting your representative.

    I would just post the link to this PDF but I have no idea where this can be found on the Solve CFS website (really don't like that website, I have so much trouble finding anything there even with google search!).
     

    Attached Files:

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  11. Mary

    Mary Forum Support Assistant

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    I just got word from my congressman's legislative health aide - Rep. Steve Knight (CA 25th district) is going to sign! :thumbsup:

    I had to follow up on this a couple of times, including this morning. The aide asked me a question about responses to the NIH working group RFI, and luckily I was able to answer him :)D) - I gave him an NIH link which had links to the RFI responses.
     
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  12. Silencio

    Silencio Senior Member

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  13. Silencio

    Silencio Senior Member

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    Number of confirmed signatures is 38 now..
     
  14. ahimsa

    ahimsa Rarely on PR now

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    Comet and AndyPR like this.

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