Take the NYU Research Survey about your ME Experience
October 4, 2018
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I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S.
Category: Featured actions
Sign Norway's Petition: Demand Resignation of Advisory Board Promoting Biopsychosocial Model
September 19, 2018
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* Nina E. Steinkopf is a ME patient activist and author of the blog www.melivet.com. The petition is addressed to the Norwegian Ministry of Health and Care Services and below is an English translation – for our international supporters. Everyone is encouraged to sign the petition. The management for the National Advisory Unit on CFS/ME must resign.
Open Letter Demands Removal of Netflix's "Afflicted" – Sign the Petition
September 18, 2018
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On September 18th, more than 40 writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. “We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions,” states the letter. “Its inclusion
How To Protest HHS with #MEAction
September 7, 2018
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We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled the in-person protest in Washington, D.C. due to the fact that a hurricane is headed for that area on Thursday. We will reschedule the Washington, D.C. protest for a later date. Our virtual protest on Friday,
Will the FDA Stand in the Way of Your ME Treatment? Take Action now!
August 7, 2018
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Suppose there was a substance that could help you, but before you learned about it, or you could find a doctor to prescribe it, the FDA banned it from the market, even though patients have successfully used it for decades. Or suppose there was a treatment that had helped your function improve from 40 percent
Do you use a wheelchair? A team of engineers needs your input.
August 3, 2018
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The UC San Diego Smart WheelChair team is asking ME patients to fill out a short google questioner about how ME impacts their mobility and how they can best design a wheelchair accessory that would support your independence. The team of undergraduate engineering students are working to design an affordable, open source, voice activated accessory
Westminster Hall debate could be a 'turning of the tide' for ME
June 21, 2018
35 Comments
Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME. MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey
Two things to do ahead of Thursday’s Parliament debate
June 19, 2018
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A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m (You’ll be able to watch the live stream here). We want to encourage as many of our MPs as possible to attend and use this as an opportunity to raise the visibility of ME! Here’s
PBS Audience Award: Vote for Unrest
June 18, 2018
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We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award– after all, this
UK: Urge your MP to attend the 21st June debate on ME
June 8, 2018
8 Comments
A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m. We need to encourage as many of our MPs as possible to attend. Contacting your MP has never been easier with this new tool. Simply enter your postcode below to get started. Urge your MP