Category: Community

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.

Read More »
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

Read More »
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

Read More »
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

Read More »

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.

Read More »

Sian: Stop. Rest. Pace.

At age 16 I got a virus. Back then I did the right thing: Stop. Rest. Pace. I recovered. At age 19 I got a virus. My GP told me not to stop. Not to rest. Not to pace. 8 years on I have not recovered.

Read More »

LAST WEEK IN REVIEW: CNN, LONG-COVID SEMINAR, SEVERE ME DAY & MORE!

Last week was inspiring and eventful! We had a huge turn-out for our US Advocacy Meeting about the National Institutes of Health’s (NIH) response to long Covid and ME, we co-hosted and organized a seminar for those with long Covid with amazing organizations and activists, #MEAction UK wrote an open letter to the National Institute for Health

Read More »
Scroll to Top