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
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
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
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
If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday 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
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.
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 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'
It has been a hot summer for many around the world, and another month of courage, resilience and bravery as people with ME continue to demand equitable research, treatments and respect. We continue to fight against harmful treatments and stigma worsening the health of everyone from the newly diagnosed to
Twenty-year-old, Linda, from Sweden shares her story about getting ME at the age of 4, living with a mild version of it, which has since turned severe. Originally posted on #MillionsMissing Sweden's Facebook page.
Isolated from the outside world, stuck in-between four walls, trapped in the prison of my own body…
It has been another active month in our community! A few major items to share:
Family, Friends and Allies for ME
#MEAction is supporting a new project to build a support network for healthy allies called FFAME – Family, Friends and Allies for ME. FFAME aims to support family, friends, caregivers and allies
We are so thankful for the dedicated work that healthy ally, Shelley Krause, has given to the ME community. For the past three years, Shelley has kept the community informed and updated on issues affecting people with ME through the #MEAction twitter stream. Shelley first made a connection to ME