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Category Archives: #MEAction Projects

Call for Artists! Sending postcards to doctors!

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CALL FOR ARTISTS We’re taking art submissions for our upcoming Postcards to Doctors initiative! Postcards to Doctors will work a lot like Postcards to Voters. The Postcards to Voters campaign leveraged handwritten postcards to individuals in order to encourage them to vote.  Postcards to Doctors will use the same model in ...

Get involved: support science and advocacy this April

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April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME.  Concurrently, there will be a Congressional lobbying push hosted ...

Dec. 2018 FFAME Minutes: Advocating for ME while Maintaining Privacy

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MINUTES: Friends, Family and Allies for ME (FFAME) meeting: Saturday, December 1 Primary Discussion Topic: Advocating for ME while maintaining privacy for ourselves or loved ones For some of us, privacy isn’t an issue, as the pwME (person with myalgic encephalomyelitis) may be happy with any advocacy we can do. Some ...

Research: supporting advocacy orgs yields huge payoffs

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This Giving Tuesday, I've got some good science to show why you should donate to #MEAction and other advocacy organizations! The study Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy sets out to discuss single-disease interest groups and their influence on US politics: "This article explores their effects on federal ...

Notes from FFAME Sept. 2018 Call

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Hi: Greetings from FFAME, Friends, Family and Allies of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Welcome: Join us for our second on-line phone or computer meeting. We will be meeting monthly, the first Saturday of the month unless another time is suggested. You can listen in or speak up SATURDAY OCT. 6, 4pm EST, ...

Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!

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PETITION UPDATE (Tuesday, September 11, 2018) The CDC has posted an updated, competitive bid solicitation for the development of federal treatment guidelines for ME. The community outcry, and over 8,000 petition signatures, protesting the previous rigged, sole-source contract got the CDC's attention. Yet the solicitation is still only open through Thursday, September ...

Announcing Launch of the #MEAction Young Researcher Fellowship

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#MEAction is thrilled to announce that we are supporting the work of two research assistants working on myalgic encephalomyelitis (ME) for one year as part of our inaugural #MEAction Young Researcher Fellowship. The goal of the fellowship is to grow the field by supporting aspiring research scientists early in their ...

Calling all Family, Friends and Allies – Join the Movement to Support People with ME

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You may have watched your friend or relative struggle with myalgic encephalomyelitis (ME) unsure of what is happening or how you can help. #MEAction is supporting a new project called FFAME - Family, Friends and Allies for ME - to build a network of support for family, friends, caregivers and ...

Netherlands: Artists to showcase their work to raise awareness for ME

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Anil van der Zee, 38, is a former professional ballet dancer in Amsterdam. In 2007, he contracted a viral infection, Cytomegalovirus, and never fully recovered. A few years later he was diagnosed with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). He describes his transition from being a strong, ...

Thirty U.S. House Reps Show Support for Appropriation Language

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Thirty U.S. House representatives signed a letter last week urging their colleagues on the House Appropriations Committee to attach language to its report on the fiscal year 2018 budget that encourages the NIH, CDC and HHS to accelerate and enhance its work in research and education for ME/CFS ...