In her U.S. News & World Report article, “In Long COVID, Advocates Battling Chronic Fatigue Syndrome See Allies, Hope,” journalist Chelsea Cirruzzo examines the ME/CFS and Long COVID connection, and how the striking similarities are fueling hopes that research can uncover solutions for both. Mentioned in the piece are Solve M.E. President Oved Amitay and the Long COVID Alliance, a network of patient-advocates, scientists, disease experts, and drug developers co-founded by Solve M.E.
Cirruzzo cites the recently announced, bipartisan COVID-19 Longhaulers Act as a reason for hope. Introduced during Advocacy Week by Representatives Beyer (D-VA) and Bergman (R-MI) at a press conference hosted by Solve M.E., the Longhaulers Act would authorize and fund research and education initiatives to benefit so-called “long haulers,” an estimated 25–35% of COVID-19 patients who experience long-term effects of COVID-19 infections.
Solve M.E.’s advocacy team helped write The COVID-19 Longhaulers Act, which contains many provisions that will benefit people with ME/CFS, such as nationwide medical education (with ME/CFS specifically identified), expanding prevalence tracking (with ME/CFS included), and research about access to post-viral care and diagnostics (which applies to everyone with post-viral illness).
Solve’s Oved Amitay says the Act is, “critical to attain much-needed funding and policy solutions.”
Read the article in its entirety here.
Oved Amitay Sends a Message of Hope On International ME/CFS Awareness Day
In honor of ME/CFS Awareness Day on May 12, Solve M.E. CEO Oved Amitay spoke at #MEAction’s Millions Missing Global Event.
Watch his message of hope below.
How A Solve M.E. 2020 Advocacy Day Meeting Sparked Legislative Action in 2021
At Advocacy Day in 2020, Solve M.E. Director of Research Allison Ramiller filled in for an ME/CFS patient too ill to keep their scheduled meeting with a staff member from the office of Rep. Don Beyer (D-VA).
Allison’s lengthy conversation with the staff member about health data and big research solutions included mention of the You + ME Registry and Biobank, which was opening up to include data from Long COVID patients.
Just six months later, Rep. Don Beyer introduced a bill pertaining to the collection of Long COVID data. While that bill did not pass, Rep. Don Beyer and Rep. Jack Bergman (R-MI) recently led a special bipartisan announcement of their intention to reintroduce the COVID-19 Longhauler Act, which authorizes $30 million in FY22 for research and development of patient registries and biobanks.
To learn more about how Allison’s Advocacy Day meeting sparked legislative action, watch our latest Advocacy in Action video, presented by Solve M.E. Director of Advocacy and Community Relations Emily Taylor.
Solve M.E. Director of Research Allison Ramiller
In case you missed it, check out our thank you video to all of the senators and representatives who took the time to meet with our community and helped make 2020 Advocacy Day such a smashing success.