Urgent Action Needed: Demand NIH Fund the ME/CFS Research Roadmap!
October 10, 2024
1 Comment
Category: Research
The RECOVER-Treating Long COVID (RECOVER TLC) The Path Forward
September 26, 2024
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The RECOVER-Treating Long COVID (RECOVER TLC) Kick-off Meeting was Sept 23-25 in person and over Zoom. I had the privilege of attending over Zoom and Jaime Seltzer, #MEAction’s Scientific Director, represented the needs of the ME community in person and as an invited member of a panel on clinical trial design. There were many speakers
#MEAction’s NIH Study Response
February 29, 2024
5 Comments
NIH’s recent paper on ME/CFS elicited strong reactions from the community.
NIH ME/CFS Research Roadmap Update–Public Comment Period Now Open
February 20, 2024
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The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous
Chronic Illness Survey Adventure Finishing this Month!
December 18, 2023
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Two years ago, #MEAction embarked on an ambitious project, the Chronic Illness Survey Adventure! The Adventure is a survey to deeply examine the symptoms experienced by people with diseases that are triggered or unmasked by infection, including ME, POTS, hEDS, MCAS, and Long COVID. At the end of this year, we will close the Adventure
A Year of Exciting Medical Education Achievements
November 29, 2023
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A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model
Announcing: New NIH Conference Travel Scholarship for Providers and Medical Students!
October 26, 2023
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#MEAction is thrilled to announce a new travel scholarship for providers and medical students to the National Institutes of Health’s (NIH) Conference, Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID, this coming December 12- 13, 2023 in Bethesda, MD. #MEAction is providing this opportunity for one to two promising medical students
NIH Must Not Overlook Evidence of Exercise Harm
March 22, 2023
4 Comments
Long COVID Exercise study must address safety, efficacy concerns.
MEAction questions Long COVID exercise study’s safety, efficacy
March 6, 2023
2 Comments
Calls for immediate public release of RECOVER’s clinical trial design
Infection-associated chronic disease experts needed at ARPA-H
November 22, 2022
1 Comment
Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research projects with the goal to solve intractable health problems. As ARPA-H is in the process of hiring its first cohort of program managers, #MEAction and a coalition of chronic disease advocacy groups have published an open