Category: Actions

Help Canary crowdsource archival research

Canary in a Coal Mine (working title), my documentary film about myalgic encephalomyelitis, is heading toward rough cut, an early version of the finished film. Right now, we are working intensely on the historical sections to help the audience understand not only the history of the disease but a broader history of medicine. The intention is to give

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Petition: Keep psychiatry out of NIH study on ME/CFS

This is the first study on ME/CFS conducted by NIH in two decades. One million patients suffer from this disease, too long neglected by both CDC and NIH. It is critical that the Principle Investigators recognize existing biomedical research on the disease, as well as the results of recently commissioned studies by the Institute of Medicine for DHHS and the P2P (Pathways to Prevention) program at NIH.

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Please Donate to Help Liisa Lugus Find Housing and Long Term Care

Liisa Lugus has been bedbound with extreme myalgic encephalomyelitis for 13 years and is losing her current home. She has nowhere to go and needs our help: https://www.tilt.com/tilts/liisa-lugus-urgent-housing-and-long-term-care-fund https://www.facebook.com/friendsofliisalugus/info/?tab=page_info

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Art contest for young people with ME/CFS

The Pediatric and Adolescent ME/CFS Primer team is aiming to complete the new Primer by mid-October, 2016. As was done for the adult ME/CFS Primer, the team would appreciate having original artwork for the cover of the Pediatric and Adolescent ME/CFS Primer

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Participate in the Tuesday March 8th NIH telebriefing

On Tuesday, March 8th at 10am ET, the NIH is holding a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. Due to the limitations of the technology, only 100 lines are available. Call-in information has been sent to a select number of advocates including members of

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The Unpredictability Factor

Running on the idea that visual representations of life with M.E. can – as accurately as possible – portray the depth, the range, the severity and the unpredictability of the condition, I am pleased to say that I am currently embarking on Change For M.E. Change For Us’ next visual project….

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Submit your questions to the NIH

We invite everyone in this community to take a look at these questions and add your suggestions for additional questions or changes below. We plan to collate them and submit an additional list of questions.

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