USA: News from #MEAction

Posted on the #MEAction website on July 22:

#MEAction’s Pacing Narrative Data Gets Published in First Paper + MORE Science updates!
#MEAction said:
We are excited to share some promising updates about the scientific work #MEAction is leading to advance the field of ME/CFS research.

Our Scientific Director, Jaime Seltzer, is in the process of coordinating analysis for three major studies, including our massive symptoms survey and pacing survey, drawn directly from the patient experience. Jaime is also working hard on a third big data study, which has to remain under wraps for now, but stay tuned!

We know that patient experience is the foundation for good research. That is why our research is focused on delving deep into patient symptoms to uncover patterns and extrapolate knowledge that can help guide the search for effective treatments.
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Link to study that uses data from the Pacing Narrative Survey:

A Signal for Voice and Speech Abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
 
Email from Laurie Jones, Executive Director for #MEAction:

Celebrating A Big Senate Win
#MEAction said:
#MEAction has been working hard with #NotJustFatigue to advocate for the ME/CFS Research Roadmap and it has paid off!

The Senate Appropriations Committee included the roadmap in their report!

This is a big step in the right direction. Everyone’s advocacy, including the work of #NotJustFatigue and Solve M.E. have led to this step. I am beyond grateful for our 1:1 meetings with senators, our #MillionsMissing events, the ME/CFS Research Roadmap letter sign-ons, and everything everyone has done to make this moment possible.

Read an excerpt of the report below:

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome [ME/CFS] Research Roadmap. - The Committee recognizes the urgent need to advance research for ME/CFS, especially given its overlap with Long COVID and relevance across multiple ICs 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.
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The proposal still has to pass the full senate and house but it's good news.

EDIT: This same news has also been posted on their main website (link above goes to a newsletter distributed via email):

Celebrating A Big Senate Win
 
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