Solve M.E. partnered with #MEAction for ME/CFS Advocacy week in 2017. This monumental advocacy effort included actions for patients with every energy level and ability to join, from a social media post to a Washington, D.C. face-to-face with congressional leaders. The goal of our efforts was to educate, empower, and deliver our message to Congress to take action on ME/CFS, and set the stage for 2018 advocacy.

Over 50 ME/CFS advocates (composed of ME/CFS patients and their loved ones) met with 72 Members of Congress and their representatives in Washington D.C. Our efforts represented 56 different states, districts, and territories from across the country. Locally, over 25 district meetings took place.

We led a two-week, successful advocacy campaign from the Senate chamber in Sacramento, California to the halls of Congress in Washington DC.

We successfully completed:

  • 71 meetings with Washington D.C. congressional offices
  • 8 meetings face to face with Members of Congress
  • A sponsored Capitol Hill briefing with remarks from Senator Ed Markey (MA)
  • 2 online actions resulting in over 3,327 messages to Congress about ME/CFS
  • 3 FREE online training webinars for ME/CFS advocates
  • dozens of local district meetings across the country
  • a nationwide call-in day to Members of Congress
  • Two successfully passed state resolutions on ME/CFS
  • 1,161 advocates who took action on ME/CFS
  • 6 tweets from politicians

Senator Ed Markey (MA) addresses Capitol Hill staffers regarding his support for additional federal attention for ME/CFS. Pictured also are speakers Dr. Zaher Nahle and Carol Head. Just off camera is speaker Jennifer Brea.

A Congressionally Sponsored Capitol Hill Briefing

Thanks to the tenacity of Rivka Solomon, Senator Ed Markey of Massachusetts has stepped up as a champion for ME/CFS and his first act was to sponsor a Senate briefing to get his colleagues in Congress educated too. The Senator opened the briefing with a sincere speech followed by presentations from Jennifer Brea, co-founder of #MEAction, Dr. Zaher Nahle, then-Chief Scientific Officer and Vice President for Research at Solve M.E., and Carol Head, then-president of Solve M.E. The briefing covered the patient experience, debunked myths about ME/CFS, updated staff on research efforts in the ME/CFS field, and summarized the policy environment and specific requests for members of Congress. View the full video of the briefing on YouTube and download the slides and handouts here.

Effective advocacy is a slow, strategic, step-by-step process. Our goal is to build foundations for sustained and effective policy work in the future. The most successful advocacy campaigns are layered with short-term and long-term goals folded together, with “easy” goals and more difficult long-term tasks working together.

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