Dozens of US representatives support letter to NIH for ME/CFS research


A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1) to consider in a timely manner the input received through the NIH Request for Information, and 2) to update Congress on the NIH’s plans for ME/CFS research through 2018. The letter was co-sponsored by Rep. Zoe Lofgren (D-CA) and Rep. Anna G. Eshoo (D-CA).

These signatures came as part of a massive outreach effort spearheaded by #MEAction’s congressional team and scores of #MEAction volunteers across the country, in collaboration with the Solve ME/CFS Initiative and dozens of independent advocates. This letter to the NIH for our disease received bipartisan support and is the largest ME/CFS effort ever of its kind.

Thank you to everyone who reached out to their representatives and made this grassroots action possible. We continue to be amazed and inspired by what we can achieve when we work together.

This is only the beginning. Thanks to the leadership of a team of volunteers, #MEAction has built up a network of trained volunteers and constituents with the capacity to coordinate large-scale legislative outreach; a set of relationships with Congressional representatives and staff who want to support ME/CFS patients; a Congressional database of contacts, meetings, actions, and other data points relevant to our disease; and a series of tools and informational materials to enable even severe patients to make their voices heard.

And, thanks to your support, our new PR team has issued a press release to inform the media of this groundswell of Congressional support.

You can help us keep the momentum going. Email congress@meaction.net to learn more about how you can get involved in Congressional outreach. To help us go even farther, support our crowdfunding campaign.

Read the Congressional letter by clicking below.

 


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14 comments on “Dozens of US representatives support letter to NIH for ME/CFS research
  1. Mark says:

    Amazing Amazing Amazing!!!!!!
    This is what I’m talking about, well done Jaime.
    I apologize for my message few days ago( GOVERMENT AGENT).. Lol
    Now what give the supper power to that letter is the media, the more media spread the more chances to get real action and a real answere from the NIH, they may not care much to dig in to ME/CFS and research but they certenly care abut public opinion and politics…
    That is why so important the support, the donations, to have funds for media(pr)..
    Let’s go BIG BIG.. No a single step back!!!!

    1. Jaime S says:

      Thank you, Mark! We all worked very hard to get those signatures — my Representative called me the *hour* it was due, so I was on pins and needles the whole time! This was an enormous effort by so many. Keep fighting the good fight, people!

  2. Mark C says:

    Hope we can next get letter to CDC signed by 100 senators asking that CDC make M.E. a reportable disease, vs not tracked by CDC, for disease affecting over 1 million est in US. Then need NIH R&D funding in line with disease burden, on order of $250M/year, vs $6M in 2015, to end 3 decades of govt discrimination against M.E.

    1. Jaime S says:

      I definitely think this paves the way for more signatures in the future, but I can’t emphasize enough that we need ‘feet on the ground’ — or one the phone, or on the internet — to make that work. Advocacy like this required numerous people working together on multiple fronts. If we can get the incredible effort we saw this time again, I think that an even larger number of governmental representatives will be possible next time!

  3. Mary says:

    So glad to hear it! My congressman (Steve Knight) signed on after I contacted his office – woo hoo! : )

    1. Jaime S says:

      Great work, Mary! I’m so proud of everyone who took part!

      Just to clarify, since my name is on the article, I didn’t lead this effort, just contacted my own Representative (8 times?!)

      -J

  4. Robert Burkhardt says:

    Where can I find out who the 55 memberd were?

    1. Jaime S says:

      If you click on the letter, you’ll see who signed, Robert. 😀

  5. Selina Swaim says:

    i so hope enough of you listen to we that have had to suffer with all of our illnesses…pains…and doctors seem to start into the disbelief that we are nuts…drug seeking….in ga. we have to go to a pain managment dr. because we are getting pain drugs….really…the drs. that prescribe all of our meds are treating us with meds and we have to see someone else to undermine a specialist that we have seen …makes no medical sense….

  6. Jo Best says:

    Congratulations and good luck. In UK, 123 Members of Parliament signed an Early Day Motion tabled in October 2010 by Ian Swales MP, in response to his constituents Jan Laverick (person with severe ME since teens) and her mother Margaret Laverick, earning a short parliamentary debate. This was a great achievement as the majority of EDMs attract only one or two signatures and are seldom debated. This resulted in an announcement by the UK Medical Research Council of £1.5m (later increased to £1.6m) ringfenced to investigate the causes of ME. This was equivalent to a mere £6 per person in UK estimated to have ME, but bearing in mind that zero had been granted by the public-funded MRC for biomedical research into this disease for some twenty-five to thirty years. Here are some links –
    ITV regional news of EDM / MRC announcement –
    https://youtu.be/CalHKUZvYAA
    Televised short debate –
    http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9382000/9382412.stm
    EDM –
    http://www.parliament.uk/edm/2010-12/778

  7. Amy says:

    If your congressional rep signed the letter, please send them a thank you letter or email! You can even use the contact link that most have on their websites and put something like, “Thank you for Signing the Letter to NIH for ME/CFS Research” in the subject line. Even if you didn’t contact them initially to sign (my Congresswoman was already on board after several others in my district asked her to sign), show your support for them and share a brief explanation of your interest in ME/CFS, It may not seem so important, but their offices count emails to gauge how much support there is for ME/CFS.

  8. Margaret Helming says:

    Just sent an email to my Representative, Mark Pocan, thanking him for signing on to the letter.

  9. justin says:

    Great to see so many signing this letter. Fantastic work MEAction.

  10. Corey Anonymous says:

    Does anyone know when the director would/might be expected to respond? Thankyou.

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