Category: Severe ME

Investigating the impact of Covid-19 on ME – Survey

Please help #MEAction UK and #MEAction Scotland by taking part in this survey to find out the effect that Covid-19 has on people with ME. Take the survey We are working in collaboration with Action for ME to gather evidence on the impact of Covid-19 on our community. We have heard many stories from people

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Waiting for Superman Book on table

Waiting for Superman – UK Book Giveaway and Review

Do you want to win a free copy of Waiting for Superman? We have three copies to give away to people in the UK!  To enter, all you have to do is follow #MEAction UK on Instagram, like and comment on this post. The deadline is 9am (GMT) Monday 8th March! Win a copy! Thank

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Update on Thane’s civil commitment case

Editor’s note: This update is provided by Thane’s care team. UPDATE: Friday, February 5 , 2021 Thane was released from the hospital today and is home! j UPDATE: Wednesday, February 3 , 2021 Thane’s lawyer shared with us that the evaluation went very well on Monday morning. Thane agreed to a “continuance for dismissal,” which means that

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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

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We Celebrate the Life and Legacy of a Warrior for ME

It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME.  She had a true passion to protect

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We Remember and Honor the Life of Heather Colman-McGill 

Our dear community, Let us take a moment to gather together and comfort one another. We are saddened to bring you news of a death in the community. Heather Colman-McGill has passed away. We send our heartfelt condolences to all of Heather’s loved ones. We know that many in our community had reached out to Heather and

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Words from the Depths of Severe ME: Honoring the life of Rosie

Photo is of Rosie with her niece 10 years ago.  Today we honor the life of Rosie Bayman who died from severe myalgic encephalomyelitis (ME) one year ago, today.* Rosie, from Warwickshire, England, had ME for five years before she died. Rosie wrote poetry in her head when she had to lie in darkness and in silence,

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