#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.
Category: NIH
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
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
Advocacy Win! Disability Partnerships Make a Difference for People with ME
October 6, 2023
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The National Institutes of Health (NIH) announced they will designate people with disabilities as a population with health disparities. This is a win that could have a large impact on people with ME and the millions of people with disabilities across the country. “This designation recognizes the importance and need for research advances to improve
#MEAction and Long COVID Justice Issue Press Statement about NIH Failure of Long COVID
August 23, 2023
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#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS – and our core symptoms overlap – RECOVER’s research has major implications for our community.
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
NIH Extends Funding for ME/CFS Research Centers
September 7, 2022
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The National Institutes of Health (NIH) has taken steps to fix a “funding gap” in the timing of research awards for the ME/CFS Collaborative Research Centers (CRC) and the Data Management and Coordinating Center (DMCC). The currently-funded research centers which apply, and are approved, for another 5-year term will no longer face a 7-month funding
Research Update: The NIH Intramural ME/CFS Study
May 4, 2022
12 Comments
National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon. “The study will help patients and should move the field forward in