#MyalgicE is an active hashtag on Bluesky. In the last 30 days, 11 people shared 56 posts with it — around 2 a day. Activity is up 9% versus the previous week, peaking on Sep 7 with 11 posts.

Posts with #MyalgicE

Anil van der Zee

@anilvanderzee.bsky.social

2 days ago

A blog about the response of many denialist dismissive cognitive dissonance comments on social media whenever they are confronted with very severe ME in the media. anilvanderzee.com/the-rus…. #pwme #myalgicE #millionsmissing

anilvanderzee.com

The rush to dismiss severe ME or Long Covid in the media may harm you or your loved ones in the future. - Anil van der Zee

The last couple of weeks my social media has had a lot more traffic. Partly due to my own story in the media, but also because other people with (very) severe ME or infectious associated chronic illne...

1 9 21

Honest and Unfiltered

@momazonrises.bsky.social

over 1 year ago

#ProudBlue #MomSky “Before M.E.” ME/CFS is a debilitating illness with no cure or treatments. This year for ME Awareness week, we are finishing this sentence. Before ME, I…? #BeforeME #HiddenCrisis #MECFS #pwME #MyalgicE www.cdc.gov/me-cfs/about...

23 60 181

Anil van der Zee

@anilvanderzee.bsky.social

2 days ago

Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark. This looks really amazing!! vimeo.com/user10350947... #pwme #myalgicE #millionsmissing #severeME

1 9 17

Anil van der Zee

@anilvanderzee.bsky.social

4 months ago

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME. It is one of the only places where the sickest patients can receive specialised care. We need this everywhere!! #pwme #myalgicE #millionsmissing #severeME

6 52 124

Tom Kindlon

@tomkindlon.bsky.social

9 days ago

The Hidden Hierarchy of Illness journals.sagepub.com/doi/…. Screenshot from September AMMES newsletter #MEcfs #PwME #CFS #ME #MyalgicE

Photo of a man with his head in his hand with the following text

The Hidden Hierarchy of Illness
"As a rehabilitation physician working closely with patients with long-standing ME/CFS and functional disorders, I have repeatedly been struck by a paradox that is difficult to forget. Several patients whom I had followed for years, disabled by profound fatigue, cognitive dysfunction, and loss of function, were later found to have incidental MRI findings that supported a diagnosis of multiple sclerosis. Each time, I expected devastation. Instead, more than one patient told me that the day they were given the diagnosis of MS was ‘the best day of my life’. Not because their suffering had changed, but because, for the first time, it had become legitimate. They were no longer exhausted without cause, disabled without explanation, or ill without status. They had crossed an invisible threshold from a condition that required justification into one that commanded recognition."
Read more here>>

4 19 52

Anil van der Zee

@anilvanderzee.bsky.social

3 days ago

"A Special Tribute to Anil van der Zee | 2026 Amsterdam ISLC-PAIS Conference" Thanks to Fred Verdult for his talk and for organizing the honor. Thanks to Michael Chapman for the video of this special moment. vimeo.com/whei/anil-ro... #pwme #myalgicE #millionsmissing #severeME

vimeo.com

A Special Tribute to Anil van der Zee | 2026 Amsterdam ISLC-PAIS Conference

A special moment during the 2026 Amsterdam ISLC-PAIS Conference Patient Recap Session. Fred Verdult shares the news that Anil van der Zee has received a Royal Honour from the Mayor of Amsterdam, recog...

0 5 14

Anil van der Zee

@anilvanderzee.bsky.social

5 months ago

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

youtu.be

Buried Alive with M.E. (with subtitles)

YouTube video by Anil about ME

10 66 105

Anil van der Zee

@anilvanderzee.bsky.social

almost 2 years ago

Austrian minister of Health Johannes Rauch joining the lemon challenge to raise awareness about ME and to stimulate biomedical research. How amazing is that!! www.instagram.com/share/r…. mecfs-research.org/lemonchallen... #pwme #myalgicE #millionsmissing #lemonchallengeMEcfs

1 35 98

#MEAction Network

@meactnet.bsky.social

over 1 year ago

The White House is terminating funding for NIH RECOVER grants studying Long COVID that had been awarded in 2022 and 2023 - effectively stopping 45 studies that were already underway and almost complete. #NoLongCOVIDCuts #LongCOVID #MECFS #pwME #MECFS #MyalgicE

9 58 94

Anil van der Zee

@anilvanderzee.bsky.social

6 days ago

My illness is not part of my identity. Some late‑night, off‑the‑cuff rambling about the notion that some people make their illness part of their identity. This was partly in response to that Telegraph article. #pwme #myalgicE #millionsmissing youtu.be/zFwaPS5c6RI?...

youtu.be

My illness is not part of my identity

YouTube video by Anil about ME

0 3 20

Royal Free 1955

@rfh1955.bsky.social

almost 2 years ago

Thirty-six years ago today. The Gazette, Montreal, Canada. 15th November 1988. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

2 4 70

Tom Kindlon

@tomkindlon.bsky.social

about 2 months ago

Press release on this interesting Dutch research study: "New research: muscle problems in post-COVID and ME/CFS cannot be explained by prolonged inactivity" Google translation: www-amsterdamumc-org.translate.goog/nl/vandaag/n... #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE

Tom Kindlon @tomkindlon.bsky.social

Great to have this research with such a useful control group: Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest www.nature.com/articles/s41... #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE