We love to see it! Not only did the Senate roundly reject cuts to science funding, but #MECFS funding was mentioned explicitly in both #NIH and #CDC appropriations language. This includes funding for the ✨ #MECFS Research Roadmap ✨ which was hard-won. The Roadmap was a longstanding project at...
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Jaime Seltzer: “We love to see it! Not only did the Senate roundly reject cuts to science funding, but
#MECFS funding was mentioned explicitly in both
#NIH and
#CDC appropriations language.This includes funding for the
#MECFS Research Roadmap

which was hard-won.The Roadmap was a longstanding project at NIH within
#NINDS, where the world's best
#MECFS researchers created a report re: the state of the field, inc. a gap analysis. The effort was monumental, featuring more researchers, clinicians, and people with lived experience than I can name here, including
#MEAction Executive Director Laurie Jones:
https://lnkd.in/gdg3faRV.
#MEAction fought hard for the Research Roadmap to be funded, launching a petition that netted

thousands of signatures

:
https://lnkd.in/gj_AWitc. So many advocates gave of their time and very limited energy to ensure that researchers have access to the funds they need to further
#MECFS research.
Now, the Senate Appropriations language is unequivocal: Fund
#MECFS.”
#NIH:
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS] Research Roadmap.-The Committee recognizes the urgent need to advance research for
#MECFS, especially given its overlap with
#LongCOVID... and commends
#NIH for approving the ME/CFS Research Roadmap. The Committee encourages
#NIH to implement the roadmap's recommendations, including advancing biomarker discovery, diagnostic tool development, and clinical trials.
#NIH is further directed to provide a detailed implementation plan to the Committee within 180 days of enactment."
#CDC:
Given that a subset of patients with post-acute COVID–19 and other post-infectious syndromes meet the diagnostic criteria for
#MECFS, the Committee continues to encourage CDC to develop a national epidemiological & disease tracking study of post-infectious syndromes prevalence, specifically the rates of ME/CFS in adults. The Committee encourages CDC to strengthen collaboration with (1) interagency partners, (2) disease experts and stakeholders, and (3) the NIH’s Collaborative Research Centers. Additionally, the Committee urges CDC to conduct a series of epidemiological studies into the causes, diagnosis, and risk factors of ME/CFS. The Committee expects CDC to engage physicians and patients in an effort to increase awareness of ME/CFS and disseminate updated clinical guidance. Finally, the Committee supports CDC’s successful Project ECHO-style primary care provider education programs and encourages CDC to explore expanding the program to additional States and regions, with a special focus on rural and underserved communities.
Appropriations language:
https://lnkd.in/g57dvWNt
STAT News:
https://lnkd.in/g82c7jbx