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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55 members of the US Congress support ME/CFS research

Discussion in 'Petitions' started by John Mac, Sep 9, 2016.

  1. John Mac

    John Mac Senior Member

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    #MEAction has just sent the following email:


    I am so thrilled to share with you the outcome of an unprecedented congressional outreach last week on the part of American activists.
    A total of 55 members of the US Congress have signed on to a letter to NIH Director Francis Collins about the status of ME/CFS research. These signatures came as part of a massive outreach effort spearheaded by #MEAction’s congressional team and scores of #MEAction volunteers across the US, in collaboration with the Solve ME/CFS Initiative and dozens of independent advocates. It is the first bipartisan letter to the NIH for our disease and the largest American ME/CFS effort ever of its kind.
    We continue to be amazed and inspired by what we can achieve when we work together and want to work with you to help support legislative outreach in your country.
    This is only the beginning.

    Jennifer

    Here is the news on their website
    http://www.meaction.net/2016/09/09/us-congress-letter-to-nih/
     
  2. TiredSam

    TiredSam The wise nematode hibernates

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    So much to read at the moment, and all of it good news :)

    Me too. I'm actually feeling lucky to have got ME just before all this stuff started happening.
     
  3. Sidereal

    Sidereal Senior Member

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    What's with all the good news today?
     
  4. snowathlete

    snowathlete

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    great achievement, lots of effort went into it by the looks of things, so full credit to those involved in organizing this and those who took part to make it happen.
     
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  5. JaimeS

    JaimeS Senior Member

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    I still can't believe how many! That is about 1 of every 8 Congressional Representatives signing, and many more now knowing more about ME than they did last week.

    Many advocates, some of them first-time advocates, called and wrote several times in our very narrow timeframe. I am so proud of everyone!

    :redface::redface::redface:
     
  6. Mary

    Mary Senior Member

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    Big thanks to you @JaimeS and the others at ME Action who organized this! :thumbsup:
     
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  7. JaimeS

    JaimeS Senior Member

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    Hey folks, if you value this effort, please consider contributing to (and/or promoting) the #MEAction Crowdrise fundraiser here:

    https://www.crowdrise.com/millionsmissing-round-2/

    You can donate to my arm of the fundraiser at this link. It all goes into the same 'pot', however, this is just me setting a specific fundraising goal and trying to meet it:

    https://www.crowdrise.com/millionsmissing-round-2/fundraiser/jaime-smeaction

    I'm writing a piece on clinical implications of the Naviaux article, and people who donate get first dibs, because I've reached 10% of my goal. I will have a different goodie available when I reach 25% of my goal.

    Also, easiest advocacy ever: Thunderclap. Just click below and sign up if you have a Facebook, Twitter, or Tumblr account and on the day of our protests, September 27th, we will tweet and Facebook-post the same message on hundreds of accounts, reaching (right now) hundreds of thousands of individuals. It unbelievably easy and it lets people know you signed up, so it's self-promoting:

    https://www.thunderclap.it/projects/46042-millionsmissing-demand-change

    We are creating special tweets and/or a Thunderclap just for government representatives, too. :D

    So much happening and it's all so exciting!

    Jaime
     
    Last edited: Sep 9, 2016
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  8. AndyPR

    AndyPR Senior Member

    Response from NIH, shared by Janet Dafoe on Twitter




    I think it's fair to say it's underwhelming as a response.
     
  9. JaimeS

    JaimeS Senior Member

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    To say the least!
     
  10. John Mac

    John Mac Senior Member

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  11. Tuha

    Tuha Senior Member

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    Well, we can certainly see a slow progress but if you want to solve a problem it looks differently - you quickly hire the best researchers, you put them money, you educate doctors, medical students,... I dont see anything of this.
     
  12. Denise

    Denise Senior Member

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    "Collins Responds to Congress
    In September, fifty-five members of the House of Representatives sent NIH Director Dr. Francis Collins a letter in support of more ME/CFS research. Dr. Collins has now responded, but it is hardly satisfactory."

    full post
     
  13. mfairma

    mfairma Senior Member

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    I'm just surprised that anyone is surprised by this.

    55 is an impressive number, but these letters have been sent before and the response always sounds just impressive enough to mollify people whose commitment is superficial. Maybe this time or maybe next time systemic factors will have moved enough in our favor that the response to Collins will be strong and harsh. I tend to think that our political capital is still too low to engage in this sort of advocacy and expect real returns (not that the awareness raising this involves doesn't have its own value independent of direct results). Hopefully I'm wildly wrong.

    Anyway, reading this reminded me of that time Bob Miller got Obama to respond to a question about CFS. Everyone got excited that he had said the name of our disease and the Millers told everyone they shouldn't make public criticism because our ship had finally come in. I seem to recall some of that behavior going on last year as well. I can only imagine how it would be to have watched this community for thirty years since the god awful name was created, but six+ years has been enough to see the same patterns replay over years and across generations of advocates. There is much that is novel and great in recent advocacy, but, to my eyes, there is also much that is old and staid.
     
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