Category: Polls

Values & Policy: Outcome of our November Poll

Listen to the article:   #MEAction’s Values & Policy initiative has evolved out of the need to better clarify our values, tactics and positions so that we are more unified in our work as a large, diverse community.  As a first step, we asked the community last November to take a survey to indicate what

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Your experience of ME/CFS services – Take the survey by #MEAction UK

The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee. [maxbutton id=”22″ url=”″ text=”Take the survey” ]   The survey asks

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Give your feedback on the #MEAction USA protest demands!

Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here: The goal of this process is to revise the demands and adopt them

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Poll: Letter to thank NIH for Announcement

November 20th Update: Thanks to all of our members who voted in this poll. A significant minority of our members voted against #MEAction signing the letter, so we have decided to not formally sign the letter. We are still working out what policies make sense and really appreciate all of our members’ flexibility and openness

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Letter: Ask HHS to Investigate PACE

Dear #MEAction users, Please find below a letter to HHS (CDC and AHRQ) calling on them to investigate the PACE trial and take whatever steps are needed to protect patients. This includes revising the AHRQ Evidence Review and CDC clinical guidelines to remove recommendations such as cognitive behavior therapy (CBT) and graded exercise (GET) that are based on

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Poll: Should #MEAction sign this NIH Letter?

Bob and Courtney Miller are writing a letter to Francis Collins, Director of the National Institutes of Health (NIH) and Sylvia Burwell, US Secretary of Health asking that the NIH: Assign ME/CFS to a strong, well-funded Institute like NINDS, to enable strategic planning and structural accountability. Fund a mix of intramural and extramural research (as NIH does for

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