Since its inception three years ago, the #MEAction Congressional team has worked hard to build relationships with members of Congress in order to gain their support for investing in biomedical research and clinical care for myalgic encephalomyelitis.
Now, the Congress team has created a comprehensive manual for activists who want to gain more knowledge about the process of lobbying Congress. It is especially designed for those getting ready to set up a meeting with a Congressional office. (Note that it is not necessary to read this manual in order to participate in one of our calls-to-action.)
Meeting with your Congressional member or staffer is one of the best ways to get their support for ME research and patients. The Congressional toolkit outlines the process for setting up a meeting, how to prepare for the meeting – including how and what to ask of your Member – and how to follow up after the meeting. We’ve included a section about addressing your Member at a town hall meeting, and using social media to advance your work. There is also a Resource section that includes a Fact Sheet about ME to give to your Member, and a list of articles useful for educating them about the experience of living with the disease, its critical issues and the science and research.
If you are preparing to meet with your representative, we invite you to contact our Congressional team to help you prepare or with any questions at [email protected].
We have also created a webpage on our site to keep the community updated about our current calls-to-action, and about the progress that we are making to build congressional support for ME. You can also join our mailing list to stay-up-to-date on #MEAction.
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Help us track Members of Congress
Our Congress team is also actively tracking Members of Congress who have been contacted about ME by a constituent. Knowing about their response (or lack thereof!) will enable us to assess potential supporters and strategize future outreach and actions. To help us tally this information, we encourage you to send us (a) information about meetings/interactions you’ve had with your Members of Congress and (b) send us your email and mailing (voting) address to [email protected] so that we can contact you about future calls-to-action involving your Member. (Your home address will enable us to identify which Congressional district you are in.)
Take Action now
We currently have two calls-to-action where we need you to contact your Member to ask for their support, as outlined below.
- Ask your Representative to send a letter requesting the House Energy and Commerce Subcommittee on Health hold a hearing to examine the clinical care crisis of ME/CFS. Contact your Representative.
- Ask your Senator to co-sponsor SR-508, a resolution to raise awareness of ME/CFS. Contact your Senator.
Additionally, we urgently need to find constituents in Alaska, Iowa, Kansas, Kentucky, Mississippi, Montana, Nebraska, Utah, and Wyoming who are either patients or close friends/family members who are willing to become involved in our advocacy on an ongoing basis. If you know someone in these states who might fit this bill, please email [email protected].
The thousands of hours of behind-the-scenes work undertaken by our Congressional team – in partnership with organizations like Solve ME/CFS Initiative and Massachusetts ME/CFS & FM Association – has resulted in important strides forward for gaining Congressional allies. You have likely participated in one of the calls-to-action that have resulted in these wins, including:
- After a two year push by #MEAction, the Solve ME/CFS Initiative, and the Massachusetts CFIDS/ME & FM Association, Senators Edward Markey (D-MA), Susan Collins (R-ME), Angus King (Independent – ME), and Chris Van Hollen (D-MD) introduced S.Resolution 508, the first ME/CFS resolution since 1994! The tri-partisan Resolution would raise awareness about ME/CFS. We are actively seeking co-sponsors to support this resolution so please contact your senator if you haven’t already done so.
- Letters by both Republican and Democratic Representatives requesting a House hearing on the ME/CFS Clinical Care Crisis. We are actively campaigning for a House hearing so please ask your representatives to send this letter to the House Energy and Commerce Subcommittee.
- Congressional letters sent by House members in 2017 (31 signers) and 2018 (44 signers) requesting the inclusion of ME/CFS language in the Fiscal Year 2018 and 2019 appropriations reports.
- A Congressional briefing on ME sponsored by Senator Ed Markey in May 2017.
- Countless Congressional meetings in recent years including May Advocacy Week in 2017 done in partnership with the Solve ME/CFS Initiative.
- Fifty-five House members sending a letter in 2016 to the NIH expressing their concern about its efforts for ME/CFS.