Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

Act now - thank US Senator Ed Markey who has offered to be ME's advocate

Discussion in 'Action Alerts and Advocacy' started by Sasha, Feb 27, 2017.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    Edit: the email address in the article below doesn't seem to work, @RivkaRivka.

    Rivka Solomon did a stellar job on Thursday in getting Senator Ed Markey to offer to be a champion for ME in the US Senate, to put pressure on the NIH to get more funding.

    She wants people to write immediately to thank him, to apply positive pressure to keep his enthusiasm up and hold him to his promise.

    Details in this article (including some text for you to send if you like) and here's Rivka in action.



    Can't hurt to write from overseas either, I'm thinking!

    Edit: It will carry extra weight if you're from Massachusetts, because you'll be his constituent! But I've written to him, even from the UK. Let's let him know what a big deal this is, and how grateful we are.
     
    Last edited: Feb 27, 2017
    dangermouse, Laelia, ArunP and 45 others like this.
  2. aimossy

    aimossy Senior Member

    Messages:
    1,068
    Likes:
    3,649
    This is so GOOD! Rivka was brilliant and spoke really well. Hope people follow up and do this simple action to help.
     
    Laelia, ArunP, L'engle and 13 others like this.
  3. Joh

    Joh Inactivist

    Messages:
    476
    Likes:
    3,192
    Germany
    Wrote an email. Might be a little strange coming from Germany, but I hope it doesn't hurt to let him know that there are people hoping for change worldwide. Many thanks to Rivka, brilliant action! :thumbsup:
     
    Laelia, L'engle, Sushi and 12 others like this.
  4. Joh

    Joh Inactivist

    Messages:
    476
    Likes:
    3,192
    Germany
    Email was returned, user unknown, so the address from the MEaction article doesn't work. Couldn't find an email address on his homepage.
     
    RivkaRivka, Rrrr, Aroa and 2 others like this.
  5. aimossy

    aimossy Senior Member

    Messages:
    1,068
    Likes:
    3,649
    I saw someone post on MEAction fb the same thing re email ping back.
     
    RivkaRivka, Rrrr, Aroa and 2 others like this.
  6. AndyPR

    AndyPR Cookies for Tired Sam

    L'engle, Sushi, RivkaRivka and 3 others like this.
  7. Joh

    Joh Inactivist

    Messages:
    476
    Likes:
    3,192
    Germany
    Thanks, Andy. Form is only for people with US-address. Don't use Twitter or Facebook. Email came back five times, so I cancel that for today. Still a great action!
     
    RivkaRivka, Rrrr, Aroa and 1 other person like this.
  8. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    I also got my email message returned. Bummer! I really would like to thank the senator and I'm not on other social media either.

    Maybe I'll snailmail him a letter!
     
    L'engle, Solstice, RivkaRivka and 6 others like this.
  9. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    RivkaRivka, Rrrr, Mary and 2 others like this.
  10. Denise

    Denise Senior Member

    Messages:
    1,094
    Likes:
    3,435
    I think most US senators and representatives limit who can contact them (using the online forms) to their constituents.

    In a case like this, the focus is healthcare/research funding so it might be easiest to contact Sen. Markey's health legislative aide. ( avenel underscore joseph at mail dot house dot gov )
     
    Sushi, Solstice, RivkaRivka and 4 others like this.
  11. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    Is anyone in touch with @RivkaRivka, or has a log-in so that they can post on that #MEAction article? This is a very good advocacy idea indeed and it would be a shame if we couldn't support it as fully as it deserves because of these issues. Maybe Rivka could touch base with Senator Markey or his team to ask how he'd prefer people to thank/contact him?
     
  12. eljefe19

    eljefe19

    Messages:
    483
    Likes:
    630
    I'm not a constituent of Senator Markey but I sent an email anyways.
     
  13. Joh

    Joh Inactivist

    Messages:
    476
    Likes:
    3,192
    Germany
    @eljefe19, did you send a "real" email, or an email through the online-form? Thanks!
     
    RivkaRivka likes this.
  14. eljefe19

    eljefe19

    Messages:
    483
    Likes:
    630
    I used the online form and then received an email confirming my email had been received by the Senator's office.
     
    RivkaRivka and Joh like this.
  15. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    367
    Likes:
    565
    Hi everyone! Thank you so much for your kind words!

    I sincerely apologize for an incorrect email address going into the article that is linked above, the article asking people to email the Senator.

    Update: Apparently the senator does not have an email address?!

    Besides, we have now heard that they weigh phone calls much more heavily than an email or their "contact us" form. And it takes about 30 seconds to call.

    His number is 202–224-2742, and just say to his receptionist: "Senator Markey: Thank you for promising in Northampton to advocate for M.E. Millions of disabled Americans with ME desperately need a champion to fight for them on Capitol Hill." Or something like that.

    Please ask your friends to call too.

    If you cannot call, then please do use the "contact us" form on his website. (I heard a couple of people from around the country who do not live in Massachusetts are using any ZIP Code for Massachusetts they can find.)

    Thank you!

    -- Rivka
     
    Jennifer J, ahimsa, Sushi and 15 others like this.
  16. GodGenghis

    GodGenghis

    Messages:
    30
    Likes:
    117
    I called and expressed my gratitude for senator Markey to the woman who answered. I had a short hold wait time and then when she answered she was polite but somewhat hurried. I figured that might be because of all of you who were also calling :)
     
    Sushi, Solstice, Joh and 4 others like this.
  17. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    367
    Likes:
    565
    Excellent!!!!
     
    GodGenghis, Sushi, Solstice and 4 others like this.
  18. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    Hi Rivka - thanks so much for putting this question to the senator at the meeting. You did a really great job and it's exciting that he made this offer.

    Given that you've got some updates on the best channels for people to use to advocate to Senator Markey, I wonder if it's worth your putting out an update to the action via the daily #MEAction newsletter? That way, you'd maximise the number of calls.
     
    Sushi, Solstice and Joh like this.
  19. Eian Mcneely

    Eian Mcneely

    Messages:
    30
    Likes:
    48
    I must say a bold step taken sending an email right away
     
    Sushi and Sasha like this.
  20. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    367
    Likes:
    565
    @Sasha thanks for the suggestion. MEAction did edit the original article to reflect all these changes just a few hours after the original article went out. So I think we might be OK. But I can ask them.
     
    ahimsa, Sushi and Sasha like this.

See more popular forum discussions.

Share This Page