Wednesday, August 19, 2015

ME Action Calls for Funding Equality

In light of the recent CDC funding cut for ME/CFS, ME Action's call for equal funding is both timely and urgent.

Along with Mass CFIDS Association Board members, I am meeting with Elizabeth Warren's staff on Thursday. I urge all of you in the target states (see below) to contact your representatives.

These meetings can be done by phone, and by several people simultaneously.

There are two messages: Increase funding commensurate with impact of the illness, and move ME/CFS from the Office of Research on Women's Health (which gets no funding), to the National Institute of Neurological Disorders and Stroke.

This is a representative democracy. Let's get represented!
#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 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.


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 consultant is now 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.


We still need help from patient advocates willing and able to call into 30-minute meetings on Capitol Hill from the following states and Congressional districts:
  • Alaska (all)
  • Kansas (all)
  • Kentucky (all)
  • Louisiana (all)
  • 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.
No matter where you live, sign the US funding equality petition and help us take the petition to the streets.


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.
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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