Urge your MP to sign EDM 271!
September 9, 2017
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We need your help for parliament to recognise the strength of feeling about NICE guideline review
Category: Featured actions
Need Help Recovering from Hurricane Irma & Harvey?
September 8, 2017
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Let us know if you need help recovering from Hurricanes Harvey & Irma. We are planning to share the needs of hurricane victims with the ME community on our Facebook page. If you would like to make your needs known to the ME community, please fill out this form: Loading… If you have any questions,
Invite Congress to experience UNREST film and VR!
September 8, 2017
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#MEAction is teaming up with the Time for Unrest campaign and Solve ME/CFS Initiative to bring two new exciting opportunities to educate people on Capitol Hill about ME next week. On Wednesday, September 13, there will be a screening of the the Sundance award winning film, Unrest, directed by and featuring Jennifer Brea. Then on
Explore the Science on ME
September 4, 2017
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Leading scientists presented their research on ME/CFS at the day-long Community Symposium on the Molecular Basis of ME/CFS* at Stanford on Aug. 12. The researchers spoke at length about the complicated biological processes involved, their study results and the limitations of their conclusions presented thus far. The amount of science on ME/CFS presented was overwhelming,
3 Ways You Can Join in a #TimeforUnrest
August 17, 2017
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Update: View a recording of the call here – https://www.youtube.com/watch?v=LQWgvK1UsdQ ————————— The September kickoff of the #TimeforUnrest campaign is just around the corner, and we at #MEAction couldn’t be more excited! Last week we recorded our first community call where we got to know the Unrest team, hear about the film’s release plan and got a sneak peek into the impact campaign and its
Support Severe ME Day: Join the Silence Challenge
August 8, 2017
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August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe Myalgic Encephalomyelitis as well as a day of remembrance. August 8th was the birthday of Sophia Mirza, a 32 year-old woman who died of ME. One way you can participate and raise awareness for Severe ME Day is
Tell Congress "Don't defund ME/CFS!"
August 7, 2017
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Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC….again. Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we’ve made so far!
Speak Up, Tweet Back, Write ME: Activist Messaging 101 in the Social Media Age
August 3, 2017
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UPDATE: A recording of this community call can be found here. Join us for our next activist teach-in with Jennifer Johnson Avril* on Sunday, August 13th at 1:00pm E.T. The call will run for 90 minutes. Our storytelling is a powerful component of activism, whether we’re making a video, writing a press release or creating
#MEAction UK response to NICE 2017
July 23, 2017
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#MEAction UK response to NICE 2017 Background information UK clinical guidelines are written by a body called the National Institute for Health and Clinical Excellence (NICE). The current guidelines were last revised in 2007 and contain recommendations that people with ME consider unsuitable and potentially harmful. These guidelines also impact how ME is perceived in
Troubled by NICE guidelines? Three easy ways you can help
July 12, 2017
1 Comment
When you go to the doctor, you expect treatment to help, not harm you. But the NICE (NHS) guidelines for ME/CFS only recommend two main therapies for ME: Graded Exercise Therapy (GET – which asks you to gradually increase your exercise each week, ignoring any worsening symptoms) and Cognitive Behavioural Therapy (CBT). The majority of