Historic Congressional Resolutions for ME!

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Wow! Amazing news coming out of Congress this week! On May 23rd, by unanimous consent, the United States Senate PASSED bipartisan Resolution, S. Res. 225 “Supporting the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day”. Also, this week the House introduced an identical, bipartisan resolution, Resolution 399.

Photo of advocates, #MEAction staff, amazing volunteers, #MEAction Congressional Team- photos taken at Advocacy Week in partnership with SMCI.

The first part of the Resolutions describes in detail the essential facts about Myalgic Encephalomyelitis (ME) and the challenges people with ME face every day. The Senate and House resolve to (1) support the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day, (2) recognize and affirm the commitment of the United States to support research and medical education and promote awareness among health professionals and the public, and (3) recognize the continued importance of (A) health care professionals and medical researchers who care for individuals with ME and (B) those who work to discover the cause of, and develop and improve diagnosis of, treatments for, and a cure for, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

This week’s success culminates three years of intense advocacy efforts. It all started in May of 2016, when an intrepid #MEAction advocate proposed the resolution idea to Sen. John McCain. His staff agreed and encouraged #MEAction to find a Democratic co-sponsor. Solve ME/CFS Initiative (SMCI) joined the effort. We were thrilled when Rivka Solomon successfully recruited Sen. Ed Markey to become a Democratic ME champion in her now-famous plea to him during a Massachusetts Town Hall meeting. When Sen. McCain became ill and was no longer able to participate, Sen. Markey became the lead on the effort.

Then, a family from Maine hit a home run, gaining the support of Sen. Susan Collins of Maine. This made the Resolution bipartisan. The Massachusetts ME/CFS & FM Association also became a partner in the effort to push the Resolution forward. The two co-sponsors, Senators Markey and Collins, originally introduced the Resolution in 2018, but time ran out to get it passed. This year we finally succeeded! To our knowledge, this is the first piece of U.S. legislation that has ever been passed for ME/CFS exclusively. Two Republican and eleven Democratic Senators signed on as co-sponsors of the Resolution within one week! We were particularly excited to receive the support of Senators Hoeven (R-ND), Casey (D-PA), and Cramer (R-ND) for the first time.

Inspired by the movement in the Senate, #MEAction and SMCI began working to have the House of Representatives pass an identical resolution. While House rules do not allow single-disease resolutions to come up for a vote, four Representatives introduced an identical resolution on May 22. We were thrilled to have bipartisan leadership in the House for the first time —Rep. Bergman (R, MI-1) and Rep. Joyce (R, OH-14) joined Rep. Lofgren (D, CA-19) and Rep. Wasserman Schultz (D, FL-23) to co-sponsor H. Res. 399. Look for our upcoming Call to Action to add additional co-sponsors as we continue to raise awareness and bring more House champions into our fold.

In sum, having Congress formally acknowledge the ME crisis and the need for more action raises the profile of our disease and is an important first step towards our real goal – legislation. Moreover, we gained new allies. Passing ME legislation will be a long process, but symbolic actions like this help add to the foundation of support we are building within Congress!

Thanks to all of you who have worked alongside us to make the passing of the resolution a reality! Many of you worked hard to build strong relationships with your Congress members’ offices through your calls, emails, and in-person visits! This truly was a group effort, and we can’t be more grateful for everyone’s hard work!