White House Halts Funding for Long COVID Grants
March 27, 2025
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The White House is terminating funding for NIH RECOVER grants awarded in 2022 and 2023 for Long COVID.
Category: Research
Office of Long COVID at HHS Closing
March 25, 2025
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Ian Simon, the head of the Long COVID Office at Department of Health and Human Services (HHS), released the following statement to coworkers: Dear Colleagues, We are writing to let you know that the Office of Long COVID Research and Practice will be closing as part of the administration’s reorganization coming this week. We are
Trump Cuts Funding for ME/CFS Centers at Columbia University
March 20, 2025
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We are writing to you with an urgent call to action. The Trump administration has cut funding for the Center for Solutions for ME/CFS at Columbia University as part of a broader $400 million funding termination at the university. This devastating decision includes the loss of NIH funding for one of the nation’s few Collaborative Research
#MEAction’s Medical Flashcards Featured by CDC!
February 20, 2025
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#MEAction is excited to announce that the Anki Flashcards we created about ME/CFS and infection-associated diseases have been recommended by CDC on its new ME/CFS page for medical students! Anki flashcards are a digital learning tool used by medical students to retain medical knowledge. The deck was created for our #TeachMETreatME campaign with #MEAction Georgia
Urgent Action Needed: Demand NIH Fund the ME/CFS Research Roadmap!
October 10, 2024
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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
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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