NIH is dropping the functional movement disorder (FMD) control group from their intramural study, according to an email Simon McGrath received from Vicky Whittemore.
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,
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
Update (Sunday March 6, 1630 GMT): NIH drops FMD control group I’d asked Dr Vicky Whittemore is she had any corrections to the content and got this reply: The only correction I have at this time is that it has been decided that they will not include individuals with functional movement disorders in this study
Australian scientists say they are close to marketing a diagnostic test for Chronic Fatigue Syndrome.
UPDATED: Canberra screenings of film ‘Forgotten Plague’ on Friday 1 April at 6pm or Monday 4 April at 1pm.
Recommendations submitted by advocates to NINDS to proactively contribute to a strong federal research program and to encourage collaboration between NIH and our community.
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
‘Chronic fatigue syndrome chronically underfunded’, Australian community radio current affairs program.
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
