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#MEAction Network
A global, grassroots network fighting for equality for Myalgic Encephalomyelitis. Donate:
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#MEAction Network 3h
Replying to @MEActNet
Join us for a community call on next Wednesday October 30th at 10 am PT / 1 pm ET / 6 pm UK to discuss the values and tactics driving our movement. Read the editorials we’ve published so far here:
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#MEAction Network 3h
Replying to @MEActNet
How should the disability movement fight for people with chronic illness? How can we engage in civil disagreement to strengthen our movement? Join us to discuss these topics and more on our Values & Policy Initiative Community Call!
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#MEAction Network 3h
How do we balance sitting at the table versus demonstrating in the streets? How do we ensure our movement is representative of the ME population when ME has historically been depicted as a white women’s disease? How can we build coalitions beyond our disease group?
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#MEAction Network retweeted
Center for Solutions for ME/CFS 6h
Today we are hosting the second annual ME/CFS Consortium Meeting in . Looking forward to hearing from our Collaborating Research Centers presenting new findings in research. Stay tuned for updates
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#MEAction Network 7h
Great work! By the start of business day on the east coast (where NIH is located), we had reached over 1000 signers saying a resounding to ! We now have over 1,100!. Let's go for 2000! Sign & share now!
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#MEAction Network 8h
Replying to @MEActNet
Participating organizations include RTI, Cornell, Columbia, Jackson Labs, Sadie Whitaker from Solve ME/CFS & Canadian Institutes for Health Research (CIHR); Whittemore & Breen from NIH also in attendance. (And Jaime from of course!) We love fall & research in the air!
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#MEAction Network 8h
Our Director of Scientific & Medical Outreach, Jaime Seltzer is at Columbia University as they host the 2nd Annual ME/CFS Consortium Meeting in New York. Presenters discuss preliminary findings of research so far. Great to see so much determination & brilliance in ME research!
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#MEAction Network retweeted
Natalie Azar, MD Oct 21
I was just reviewing your website for a talk I’m giving next month. I will be telling all those in attendance not to use your website as a reference for . Change your treatment guidelines please.
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#MEAction Network retweeted
Carrie Bruin 23h
I joined and told Dr. Walter Koroshetz () the NIH plan for is . This disease has been neglected for over 30 years. It’s not a time for incremental change. This fight is urgent. Join me!
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#MEAction Network retweeted
#MelindaIsMissing ♿ Oct 21
"The ME community needs far more than a few programmatic tweaks, we need a bold plan that provides key pieces for addressing this crisis." This is Please join me & in signing:
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#MEAction Network 22h
Well on our way to 1000 signatures by morning!! At 743 right now! Tell the & that their "plan" is !
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#MEAction Network Oct 21
In a few short hours, we made it to over 500 signatures in our petition to Walter Koroshetz. Let's have him wake up tomorrow morning to 1000 resounding voices saying ! We are in crisis & you cannot kick the can down the road!
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#MEAction Network Oct 21
Thank you!
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#MEAction Network Oct 21
Join in our campaign to tell the NIH Institute Director, that his “plan” for Myalgic Encephalomyelitis is . Everyone around the world can sign the petition & join the fight!
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#MEAction Network retweeted
#MEAction Network UK Oct 20
Such good news that “A Girl Behind Dark Glasses” is one of the People’s Book Prize Finalists. Go Jessica! 👏👏👏
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#MEAction Network retweeted
Tom Kindlon Oct 21
A tragic outcome for a girl with ME/CFS reported in the report on people's experiences of the UK ME/CFS services 😢
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#MEAction Network retweeted
Millions Missing Finland Oct 20
Finnish children with M.E. are taken into care by the state against their own and parents will. Read our FB-post
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#MEAction Network Oct 19
All caregivers of people with ME are welcome to join our support call TODAY - October 19th at 3:00 pm Eastern! Go here for more info:
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#MEAction Network Oct 18
Great to see pics! "Dr Lidbury is grateful for the ME/CFS advocates & patients who have campaigned for more research funding in Australia, & hopes that a new diagnostic test will help address some of the discrimination people are facing."
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#MEAction Network Oct 18
Replying to @MEActNet
Evelien says "This was the best outcome possible! The Committee on Petitions will be able to monitor the progress and hold the Commission accountable. We have found a major ally!" EU citizens you can still sign! REad more and link to sign here:
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