2018 ADVOCACY WEEK REPORT

During Solve M.E.’s ME/CFS Advocacy Day 2018, 102 people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and their loved ones joined us in the largest Capitol Hill action for the disease to date. Advocates from across the country called for action and funding for ME/CFS research as part of the second annual ME/CFS Advocacy Day. Throughout the day the patients, caregivers, Solve M.E. staff and board members met with 122 congressional offices.

Actor Amy Carlson (Blue Bloods) and Congressman Gus Bilirakis of Florida joined the event addressing participants during a Capitol Hill reception concluding the second annual ME/CFS Advocacy Day.

Together, we accomplished:

  • 122 meetings with congressional offices
  • 16 meetings face-to-face with Members of Congress
  • The bi-partisan introduction of a Senate resolution for ME/CFS; S. Res 508, “Supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day”
  • Bipartisan requests for a hearing about ME/CFS in the U.S. House of Representatives
  • Over 95 states and districts represented
  • 102 ME/CFS advocates visited Capitol Hill

In conjunction with the event, Senator Ed Markey of Massachusetts introduced a bipartisan Senate resolution (S. Res 508) to raise awareness and encourage more immediate government response for ME/CFS. The resolution was co-sponsored by Senator Angus King of Maine, Senator Susan Collins of Maine, Senator Dianne Feinstein of California, and Senator Chris Van Hollen of Maryland and the result of a collaborative partnership between Solve M.E., #MEAction and the Massachusetts ME/CFS & FM Association.

“ME/CFS has been in the shadows for too long,” said Senator Markey. “Our resolution is just one step to help shine light on this condition and what we can collectively do to help improve the quality of life of those impacted.”

Solve M.E. also announced that Congressman Paul Gosar of Arizona and Congressman Dwight Evans of Pennsylvania have submitted a request for a hearing on ME/CFS. The request called for the Energy and Commerce Subcommittee on Health to hold a hearing to examine the ME/CFS clinical care crisis and review federal agency efforts to combat this urgent health crisis.

“Too many have already died. Too many are turning to suicide, feeling there is no way out of their nightmare. Too many suffer in silence with little hope. It’s time to change this,” stated Carol Head, then-President and CEO of Solve M.E. and person with ME/CFS.

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