Category: All News

#MEAction's Questions for NIH's Intramural Study Team

The US National Institutes of Health (NIH) is hosting a telebriefing on Tuesday to “share information about [their] upcoming activities and to gather feedback” from the ME/CFS advocacy community. They have limited phone lines and said they want to make sure to address questions from representatives from community organizations and leaders, so the call is not open to the entire public,

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#MEAction Co-founder taking Leave of Absence

Our co-founder, Beth, is taking an indefinite leave-of-absence to focus on her health. She is very grateful for all of the support she has received. We will be working hard on hiring an editor and community organizer over the next couple of weeks, but we may be slow at posting/ responding to comments and emails

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Vote: USAWG requests to NINDS director

The US Action Working Group (USAWG) is submitting a letter to NINDS director Walter Koroshetz detailing a list of requests relating to patient participation, extramural funding and the intramural research agenda. You can read that list of requests here. All USAWG actions are opt-in. We would like to poll active #MEAction members who are American citizens or residents

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NIH patient participation and communication: what do you want to see?

How should patients be integrated into the NIH process? The US National Institutes of Health has made several promising, public steps forward in recent months, announcing a new commitment to research ME/CFS, hinting at possible new drug trials, and promising to use strict criteria including the Canadian Consensus Criteria to select patients for their intramural studies. Yet

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