Urge your MP to sign EDM 271!
September 9, 2017
19 Comments
We need your help for parliament to recognise the strength of feeling about NICE guideline review
Category: Actions
Invite Congress to experience UNREST film and VR!
September 8, 2017
7 Comments
#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
3 Ways You Can Join in a #TimeforUnrest
August 17, 2017
1 Comment
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
2 Comments
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
2 Comments
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
4 Comments
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
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
Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines
July 12, 2017
7 Comments
The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy. We’ve just heard that NICE, despite being due for a revision this year, are intending not to revise the guidelines after all. This is worrying for all patients who have been harmed
ACTIVIST TEACH IN: THINK GLOBAL ACT LOCAL (Sat. July 8)
June 27, 2017
2 Comments
The ME community can greatly benefit by adopting a local philosophy to activism.
New York State Health Commissioner Sends Letter to Physicians about ME
May 29, 2017
2 Comments
On Friday, May 26th, New York State (NYS) Health Commissioner Dr. Howard Zucker emailed a letter regarding Myalgic Encephalomyelitis (ME) to eighty-five thousand physicians in NYS. In the letter he describes the illness, encourages physicians to consider ME as part of a differential diagnosis when evaluating patients with symptoms, and refers readers to Jen Brea’s