With the excitement and attention around the theatrical premiere of ‘Unrest’ in NYC this month now is the time to take ME advocacy and activism to a new level in New York. Over the past year there has been increasing progress at the state level. Last fall a #MillionsMissing protest was held in front of
The NIH announced the grants for three Collaborative Research Centers (CRC) and a Data Management Coordinating Center (DMCC) that will work together as a consortium for ME/CFS. These grants will be managed by National Institute of Allergy and Infectious Diseases and National Institute of Neurological Disorders and Stroke. The total cost of the projects for fiscal year
UPDATE On 20th September, NICE overturned the original proposal and announced it would review its guideline on ME. This is great news but means we need to double our efforts to make sure that the new guideline is robust enough to protect and help people with ME for generations to come. We still need you
FOR IMMEDIATE RELEASE: 21/09/17 CONTACT: [email protected] #MEAction Rejects the Findings of the SMILE Trial of The Lightning Process for Chronic Fatigue Syndrome Trial Uses Flawed Methodology That Can Lead To False Positives Following the release of the results of the SMILE trial, Ben HsuBorger of ME Action said: “The SMILE trial of the Lightning Process, a
#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
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
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
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
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
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
