Category: Community

Severe ME Artists Project

#MEAction is excited to announce our Severe ME Artists Project which will feature work from those within the severe ME community in honor of Severe ME Day on August 8th! This project will be an opportunity for those with severe ME to showcase their artwork (whether it be writing, photography, drawing, singing, or any other medium that illustrates their talents) with multiple ways to participate based on a person’s energy levels.

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Read Pieces of Work from the Writing from Our ME Lives Group

read Pieces from Writing from our ME Lives Group

#MEAction is excited to share two pieces of work from the Writing From Our ME Lives writing group. We will be sharing more work in the coming days! Hope you enjoy their work.  If you are interested in joining the next Writing From Our ME Lives meeting, they meet on every Thursday at 11am PST.

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Screenshot showing 4 of the panelists on a Zoom screen with a red paly button in the middle and the MEACtion logo in the corner

Telebriefing was a success!

We were thrilled at the outcome of the #MEAction press briefing last week where we invited a panel of experts to discuss the intersection between long COVID and myalgic encephalomyelitis (ME) to the media. The panelists made it crystal clear that a subset of long haulers are meeting the criteria for ME, and that it

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Terri Wilder - #MEAction Activist Camp

#MEAction’s ACTIVIST CAMP! – the Highlights!

It’s a wrap! Last weekend concluded the final session #MEAction’s first ever ACTIVIST CAMP!, a teach-in series for activists in the United States. We are so proud of this program and what it has accomplished. Congrats to our new grads!  #MEAction ACTIVIST CAMP! aimed to deepen our campers’ engagement with activism – teaching our collective

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Rise Up by Andra Day Lyrics

A note from Holly | #MEAction’s Social Media Coordinator:

I am so thankful that I get to witness the extraordinary compassion of this community on a daily basis. As the social media coordinator for #MEAction, I see the best, worst, and everything in between of the community. It is my job to help communicate out to the community and wider world all that is

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Goodbye to graded exercise therapy but concerns about physical activity programmes – Community Discussion

There were significant concerns about the recommendation of a physical activity programme in the draft ME/CFS guideline, even with the caveats attached. The recommendation that a physical activity programme should be considered if patients would ‘like’ to start one, was felt to imply that there is a choice or a desire involved, rather than increased physical activity being impossible for many.

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