Help us get ME in the 21st Century Cures Act

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#MEAction recently launched as an online platform to help anyone become an advocate.
Now we are announcing our own advocacy action: A quick-strike lobbying campaign this August to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health.
We launched this effort to capitalize on the 21st Century Cures Act, which would give the NIH an extra $8.75 billion over five years. The House of Representatives passed the bill earlier this summer, and the Senate is now considering the bill. Currently, the NIH allocates just $5 million per year of its $31.3 billion budget to study ME/CFS.
This moment is crucial – key senators on the HELP committee can add provisions to the bill before they vote.

We’re asking the US senate for funding equality

To that end, we have retained a well-connected consultant who previously worked for the Senate Finance Committee and helped pass key provisions of the Affordable Care Act. This August, the consultant is meeting with important Senate staffers, and patient advocates are calling into those meetings to present our two-point “ask”:

  • NIH will establish authority for researching ME/CFS within the National Institute of Neurological Disorders and Stroke (NINDS).
  • NINDS will establish an intramural and extramural ME/CFS program, funded at levels comparable to illnesses with similar patient numbers and economic cost to society.

Getting this language written into law would be a major victory for ME/CFS patients and allies. Our early experience suggests that key Senate staffers are open to this message. There’s a lot of work still to be done, and the outcome is uncertain. But one thing is certain: We will make progress by repeatedly sending this consistent message to Congress.
You can download our “one-pager” that we are using to present our case here.

Here’s how you can help:

1) Help us do outreach in key states

We still need help from patient advocates willing and able to phone into 30-minute meetings on Capitol Hill from the following states and Congressional districts:

  • Alaska (all)
  • Kansas (all)
  • Kentucky (all) UPDATE: We have found a volunteer for Kentucky
  • Louisiana (all) UPDATE: We have found a volunteer for Louisiana
  • Michigan (Midland, Saginaw Township, Mount Pleasant, Owosso, Thomas Township, Bridgeport Township, Big Rapids and Alma)
  • New Jersey (New Brunswick, Perth Amboy, Sayreville, Piscataway and Asbury Park)
  • Wyoming (all)

If you live in any of those locations and would like to join the effort, please sign up here.

2) Donate today

In the coming weeks, we will be enlisting the entire community’s help to speak to Congress in one, loud voice through a coordinated campaign. In the meantime, we need your help to make this endeavor a success. The huge lobbying efforts for Alzheimer disease, Parkinson disease, and other major diseases spend millions of dollars each year trying to reach Congress. We believe we can make real progress with just a few thousand.

Please donate today. Consider making it a recurring donation. Your contribution, no matter how small, will help us bring the future here faster.

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9 thoughts on “Help us get ME in the 21st Century Cures Act”

  1. hello, would it be at all helpful for those of us not living in those states to contact the HELP committee chairmembers?

    1. Rachael Korinek

      Hi Ruddy Red, we’re working on a coordinated campaign that can bring together the voices of everyone in the community, whether you live in a battleground state or not! We’ll announce it as soon as it’s ready. I love that you’re raring to go, thanks so much for the support!

  2. Excellent advocacy website!
    I was wondering about the wording choice of the 2nd ask — “similar patient numbers and economic cost to society” — would this include ‘disease burden’?

    1. Rachael Korinek

      Denise, yes! Economic cost is another way to say disease burden. They both deal with the amount that society loses (or the country pays outright) because people are sick with the disease.

  3. Rachael, I’m a patient, and would like to do some fundraising to help this effort. I have a few questions. Is ME Action Network a registered non-profit? You describe yourselves as a platform, so I’m not clear. You mention a few thousand.. how much do you think it will take? Does this money go toward a salary for the lobbyist, or to cover expenses for your organization? If money is raised over and above what you need, does it go into a general fund for running the organization or toward more lobbyist hours? Any more detail would be good, and will make it easier for me to raise money. I appreciate all the work that you and Jen are doing!!

    1. Rachael Korinek

      Hi Elle,
      I’ll answer your questions quickly here but we’d love to talk more in-depth with you via email as well. Can you drop a line to [email protected]?
      We are a registered New Jersey Non-profit and working on the paperwork for 501c3 status. I’m going to defer to others on the team to answer more specific fundraising questions but we’re looking to raise several thousand dollars to cover the cost of the lobbyist and other action-specific costs, not for the #MEAction general fund. Let’s talk more about this! Thanks so much for your support.

  4. We need both political action to prod NIH and congress to fund research, and philanthropy to fund research in the interim. End-MECFS.org takes you quickly to openmedicinefoundation.org that is starting a large biomarker study that is essential to get more handles on diagnosing this disease, understanding it, and tracking treatments, which will be complex. They are a current non-profit so you can consider donating there if you wish to fund R&D aspects.

  5. Janet L Schminkey

    I am a patient in Iowa and I would like to help in any studies if possible. I receive the ME/CFS newsletter by postal mail and I would like to become part of this study and voice my opinion for more grant money to fund studies. I would love to get off my adderall and other meds. to keep me awake and attentive. My medications rule my life.

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