Author: Ben HsuBorger

#MEAction Launches First New York Organizing Meeting

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

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NIH announces centers for ME/CFS research

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

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Parliament EDM 271 Urges NICE to Update Guideline on ME

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

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Invite Congress to experience UNREST film and VR!

#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

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3 Ways You Can Join in a #TimeforUnrest

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

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Support Severe ME Day: Join the Silence Challenge

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

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Troubled by NICE guidelines? Three easy ways you can help

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

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Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines

  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

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