#MEAction meets with Senate staffers

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This week #MEAction, in collaboration with Solve ME/CFS and USAWG, conducted advocacy efforts with members of Congress to make two key requests for the benefit of greater ME/CFS medical research funding.

Senators were asked to support a letter to NIH Director Francis Collins requesting that an equitable share of the $2 billion increase in fiscal year 2016 NIH funding be used to fund ME/CFS research. In addition, the Senators were urged to include specific language in the 2017 Appropriations Report that would recommend:

  • NIH to make a set of investments to spur ME/CFS research and drug development,

  • CDC to reinstate and increase CDC funding and conduct a broad-based medical education campaign leveraging recommendations of the IOM and of the CFS Advisory Committee,

  • HHS to identify ways to creatively fund Centers of Excellence that include a clinical care component.

#MEAction worked with constituents from South Carolina, North Carolina and Pennsylvania to set up phone meetings with staffers from the offices of Senators Tim Scott (R), Richard Burr (R) and Robert Casey Jr. (D). Patients shared their personal stories of how ME/CFS had devastated their lives and made personal pleas that their Senators increase funding to NIH and urge NIH to devote more of the funding it receives to ME/CFS medical research.

At the same time, Solve ME/CFS had in-person meetings in Washington, DC with staffers from Senators fro Illinois, Louisiana, Wisconsin, Tennessee and Massachusetts. #MEAction recommended constituents for the Louisiana and Tennessee meetings.

Constituents shared the updates on the signs of interest in ME/CFS research at NIH that would hopefully continue to grow, but explained that we need external pressure, along with internal conversation with NIH, to convince them to dedicate adequate resources.
These advocacy efforts built upon the previous initiative #MEAction had done last October to push for the 21st Century Cures act.
The U.S. Senate Committee on Health, Education, Labor and Pensions (HELP) oversees all hearings that are related to  education, labor, health, and public welfare. The committee, consisting of 22 members, 12 Republican and 10 Democrat, then consider the new information and translate it into official legal language. Though initial proposals comes from a senator or representative, the committee decides on what appropriations will actually be included in the bills language.

If you are interested in working with #MEAction, urge your representatives to do more for ME/CFS by calling or writing letters. Stay tuned to #MEAction for information on new petitions, letter writing campaigns and outreach.

If you have an idea that will help to raise awareness about ME/CFS or to put more pressure on our politicians, contact us at [email protected] . We’ll work with you to develop effective efforts and encourage others in the community to join in!

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