The bi-partisan Senate Resolution (SR) 225 “Supporting the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day” passed unanimously on May 23rd! Developing this resolution was a multi-year collaborative effort between Solve ME, #MEAction and our association. In fact, the process started more than two years ago when our very own Rivka Solomon stood up in one of Senator Ed Markey's town hall meetings and asked him to be our champion. He said yes! Since then, he and his staff have worked hard to support the ME/CFS community, including speaking at a Capitol Hill briefing in 2017 and introducing Senate Resolutions in 2018 (which did not pass before the end of the year) and this year.
The resolution supports the goals of ME/CFS Awareness Day and affirms the support of the US Senate to more research and better awareness. You can read the press release from Senator Markey's office here and the full text of the resolution here. Senator Elizabeth Warren is also a co-sponsor. The goal of the resolution was to raise awareness about ME/CFS in the Senate and to lay the groundwork for future legislation. If you can, please email or call Senator Markey's office and thank him for being our champion, and email or call Senator Warren's office and thank her for co-sponsoring the resolution. You can find contact information here. Or post on social media: @SenMarkey and https://www.facebook.com/EdJMarkey/# for Senator Markey; @SenWarren and www.facebook.com/senatorelizabethwarren for Senator Warren.
Meanwhile, a similar resolution was introduced in the US House of Representatives as House Resolution (HR) 399 by Representatives Lofgren, Bergman, Wasserman Schultz and Joyce. You can read the full text here.
For the last year and a half, we have been organizing awareness-raising and educational events to bring attention to this disease. A typical event includes an excerpt from Jen Brea's documentary Unrest, a brief presentation, and a panel discussion. The February 2019 event at Hampshire College had a particularly fantastic, freewheeling panel with great discussion and Q&A featuring Ron Davis PhD (Stanford University), Dr. Darren Lynch (Northampton Integrative Medicine), Ashley Haugen (Stanford), and MassME’s Rivka Solomon. The video of the panel is now available on Youtube at https://www.youtube.com/watch?v=5v2tIY1rR8U. Enjoy! And if you work at a healthcare or research institution and want to bring an event to your organization, please contact us!
The Open Medicine Foundation (OMF) will hold its inaugural Harvard ME/CFS Collaboration Public Symposium: Finding Clarity on Saturday, June 8th from 1 to 4 pm in Assembly Row AMC Theaters Auditorium 6 (395 Artisan Way, Somerville, Massachusetts). This free public event will introduce the OMF-funded Harvard ME/CFS Collaboration at Harvard Affiliated Hospitals, which includes over 30 researchers, and will feature presentations by co-directors Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD. Please come and meet the researchers and the OMF team. Space is limited so register now. Parking is available in the garage next door and the theater is three blocks from the Assembly T Station on the Orange Line.
We are always in search of more people to help with our activities. We particularly need assistance with organizing events, revamping our website, and maintaining our database. If you would like to volunteer, please let us know, either by responding to this email or through the Contact Us form on our website. Or join our next volunteer phone call on Monday, June 3rd at 12 noon (dial 712-775-8962, then enter 698-286). And, of course, we always welcome financial support for our work to improve health care and support services for people affected by ME/CFS.
Leah Williams, Association President