#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.