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Category Archives: All News

NOW Adopts Resolution for ME

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The National Organization for Women (NOW) adopted a resolution for diseases and conditions affecting large numbers of women, including myalgic encephalomyelitis (ME), at its conference this past July. The resolution is now live on NOW's website, read the full resolution below. The resolution recognizes the need to increase research funding, raise awareness ...

UK Coordinator Joins #MEAction Team

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#MEAction is thrilled to welcome aboard UK Coordinator, Espe Moreno, for the UK coordinator position this fall. Based in London, Espe previously worked for the Time for Unrest impact campaign in the UK, overseeing social media, screening events, and various advocacy efforts. Espe is a marketing, film and communications professional ...

Alphabet Soup – Your Guide to Current U.S. Actions

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When it rains, it pours! There has been so much activity in our US health institutions that it’s easy to lose track. Here’s a handy update to help us all keep it straight. HHS (Health and Human Services) The HHS recently and without warning shut down CFSAC, the Chronic Fatigue Syndrome Advisory ...

NIH Creates Council to Advance ME Research

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The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The committee, called the NANDS Council Working Group for ME/CFS Research, will be comprised of scientists, clinicians, representatives from advocacy organizations, and individuals with ...

Scottish Lib. Dems Pass Motion for ME, with Amendment

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ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME - Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is now party ...

Beauty Sleeping: A Real Life Fairytale

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Once upon a time there lived a very beautiful princess, and the way you could tell she was beautiful was that she knew it. She didn't bother with big puffy dresses, or make up—she was beautiful on a tyre swing out in the woods of her poor little kingdom, and ...

HHS Secretary Kills CFSAC!

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If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning: Good morning, I’d like to personally extend my gratitude to you for serving as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).Your input as a subject matter expert in myalgic encephalomyelitis/chronic fatigue ...

Scottish Liberal Democrats will Vote on Motion for ME

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At the Scottish Liberal Democrats conference this Saturday in Dunfermline, party member Emma Walker will present a motion about Myalgic Encephalomyelitis (ME), focussing on the need for biomedical research and the removal of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) as treatments for ME in Scotland. If it ...

NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!

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The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this ...

August 2018 — Research Roundup

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August was a mixed month in the world of ME research, with some truly innovative studies coming out and a few that needed another couple of rounds with the thesis advisor.  Some great books and book chapters debuted -- and we faced Afflicted, battling not only the usual stigma, but the directors' ...