URGENT ACTION ALERT: SUPPORT A FUNDING INCREASE FOR ME/CFS! We need YOU to contact your U.S. Representative. Your voice makes all the difference. Our champions, Congressmembers Lofgren and Eshoo, are currently asking for support for TWO requests that can increase funding for ME/CFS research! Requesting $9.9 million for ME/CFS programs at the CDC (Labor-HHS committee) Adding ME/CFS to the Peer-Reviewed Medical Research Program (Defense committee) Please contact your member of the House of Representatives TODAY and ask them to sign-on to these efforts. Click Here to Take Action Advanced Advocates! Check out the Action Alert webpage to take your advocacy to the next level.
Links to the letters: letter to the Labor-HHS Committee letter to the Defense Committee Sample Request E-mail: Support Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in FY2020 Dear Representative XXXXX, I am writing to ask you to co-sign two appropriations request letters currently being circulated by Congressmembers Lofgren and Eshoo. As a constituent impacted by this devastating illness, I care deeply about improving and accelerating the government response that has been called "America's Hidden Health Crisis" by the Centers for Disease Control and Prevention (CDC). The first is to Labor HHS in support of $9.9 million for ME/CFS programs at the CDC and for accompanying report language. The second is to Defense requesting the inclusion of report language adding ME/CFS to the list of Congressionally Directed Topic Areas in the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). As you may know, ME/CFS is a chronic, complex, multi-system disease characterized by profound fatigue, cognitive impairment, sleep disorders, autonomic dysfunction, chronic pain, and other symptoms often exacerbated by exertion of any sort. ME/CFS goes undiagnosed in about 90 percent of patients. Increased funding would allow the CDC to continue existing ME/CFS programs as well as conduct an epidemiological study, improve medical education on ME/CFS, and develop an Extension for Community Health Outcomes (ECHO) program. Much needed funding, focused research, reliable data, and improved medical education will strengthen support for and improve the lives ME/CFS patients across the country. We hope you will join us in urging the Appropriations Committee to provide increased funding for ME/CFS and to include ME/CFS in PRMRP’s authorized topic areas. Priscilla Kim in Rep. Lofgren’s office at Priscilla.Kim@mail.house.gov, or x53072. The deadline to sign on is COB, Wednesday, March 27th. ********************* Read the Labor-HHS request here: https://solvecfs.org/wp-content/uploads/2019/03/FY20-Letter-ME∕-CFS-Funding-Request-Labor-HHS.pdf Read the Defense request here: https://solvecfs.org/wp-content/upl...ter-ME_CFS-Language-Request-Defense-final.pdf
Thanks for your efforts on this @Emily Taylor . May I ask why the deadline to sign on is Wednesday, March 27th? This is right before your campaign in April.....
Oh, I don't know that I'd lead with "profound fatigue". Isn't part of the effort educating Congress - as well as practically everyone else - that ME/CFS is not chronic fatigue? By listing it first, you're arguably re-enforcing the wrong message. I am fearful some individuals may stop reading right then and there. I'm more likely to throw $'s at a catastrophic, multisystem disease than I am at very tired people. That is what I'd speak to.
Bumping this so more folks will see it. Deadline is Wednesday, March 27. If possible, ask your friends and family to contact their US Congress representatives, too! I will be working on email to several family members later tonight. I sent email to my Congress rep and then did a follow-up call this afternoon. I also tweeted about it! Code: https://twitter.com/ahimsa_pdx/status/1110258864694292481 https://twitter.com/user/status/1110258864694292481 PS. I changed the wording of the template when I sent my email. I really appreciate having a template so I did not have to start from scratch. But I do think that using your own words often makes a stronger impact.
Thank you everyone for your support! We just heard we had 43 bipartisan co-signers for Labor-HHS and 42 for Defense. Great work!
Source: PR.com / SMCI Date: April 3, 2019 URL: https://www.pr.com/press-release/781494 'America's Hidden Health Crisis' Heads for Congress on April 3rd Demanding Action for Millions with ME/CFS ---------------------------------------------------------- Hundreds of severely ill people with ME/CFS, caregivers, allies, scientists, and clinicians from across the country are heading for Capitol Hill on April 3rd to urge Congress to give us hope, and fully fund ME/CFS medical research and education programs. The CDC has called ME/CFS 'America's hidden health crisis.' Washington, DC, April 03, 2019 --(PR.com)-- Funding for ME/CFS has been tragically neglected for decades, historically receiving $5 million per year, which falls drastically short of the parity of $250 million per year, the amount of funding ME should receive based on its disease burden, meaning the number of people sick and severity of the disease, according to research. More at link
