#MyalgicE is an active hashtag on Bluesky. In the last 30 days, 13 people shared 50 posts with it — around 2 a day. Activity is up 40% versus the previous week, peaking on Jul 13 with 6 posts.

Posts with #MyalgicE

Action for ME

@actionforme.bsky.social

about 21 hours ago

Ahead of #SevereMEDay, we are launching the Severe ME Inquiry Report, exposing systemic failings in care, support and education for people with severe and very severe ME. Read today: www.actionforme.org.uk/th…. #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #SevereME #VerySevereME

A white man lies in bed with ear defenders and an eye mask on. Behind him is a wheelchair and curtains pulled closed. Text overlay reads “Action for ME, 25% ME Group, Severe ME Inquiry Report. ‘The more ill you become, the less care you receive’. Major new #SevereMEDay report exposes systemic failures people with severe and very severe ME face, and calls for urgent action from Government, the NHS and public services.” Photo credit Lea Aring / German Association for ME/CFS.

2 13 20

Honest and Unfiltered

@momazonrises.bsky.social

about 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...

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Tom Kindlon

@tomkindlon.bsky.social

1 day ago

"Symptoms made worse due to physical or cognitive exertion in Myalgic Encephalomyelitis & Chronic Fatigue Syndrome" #MEcfs #PwME #CFS #ME #MyalgicE

Word art of the data from "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome i.e. symptoms that are more common are bigger in font size than ones that are less common

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Tom Kindlon

@tomkindlon.bsky.social

about 16 hours ago

Manx Radio (Isle of Man) Man with severe ME speaks out about 'cruel and difficult' disease www.manxradio.com/news/is…. 8-minute audio plus short text introduction #SevereME #MEcfs #PwME #CFS #ME #MyalgicE

Man with severe ME speaks out about 'cruel and difficult' disease

News Home
More from Isle of Man News

Friday, 7 August 2026 06:17

Photo of Juan Corlett lying down
Picture credit: Juan Corlett

38-year old Juan Corlett's condition has worsened in recent years

A man living with severe ME on the Island says there are times when he can only manage around 15 minutes of conversation a day.

0 3 14

Anil van der Zee

@anilvanderzee.bsky.social

2 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

1 day ago

From Japan Circulating extracellular vesicles-microRNAs as potential biomarkers for the identification of ME/CFS: differentiating fatigue-related conditions link.springer.com/article…. Screenshot from latest Science for ME weekly update #MEcfs #PwME #CFS #ME #MyalgicE

Circulating extracellular vesicles-microRNAs as potential biomarkers for the identification of ME/CFS: differentiating fatigue-related conditions — Eguchi et al
"Circulating EVs from ME/CFS (n = 6), ICF (n = 6), and depression (n = 8) patients were analyzed using flow cytometry, nano-tracking analysis, and comprehensive miRNA analysis."
Article | Thread

1 4 11

Tom Kindlon

@tomkindlon.bsky.social

10 days 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

Abstract
Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from post-exertional malaise. The accompanying physical inactivity may contribute to a lower aerobic capacity and may explain skeletal muscle adaptations in these patients. Here, we compare whole-body exercise responses and skeletal muscle adaptations after strict 60-day bed rest in healthy people with those in long COVID and ME/CFS patients, and healthy age- and sex-matched controls. Bed rest alters respiratory and cardiovascular responses to maximal exercise, which are dissimilar in patients. Bed rest causes muscle atrophy without altering fiber type. Both patient groups have more glycolytic fibers, and ME/CFS patients display type I-specific atrophy. Only after bed rest is oxidative phosphorylation capacity associated with maximal oxygen uptake. As skeletal muscle characteristics differ between patients and healthy individuals after bed rest, physical inactivity cannot solely explain the lower exercise capacity and skeletal muscle adaptations in long COVID and ME/CFS patients.

1 24 58

Anil van der Zee

@anilvanderzee.bsky.social

3 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

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Tom Kindlon

@tomkindlon.bsky.social

4 days ago

NHS England’s ME/CFS e-Learning Modules FOI Results reveal lack of uptake via @lucibee.bsky.social meassociation.org.uk/2026…. Screenshot from latest Science for ME weekly update #MEcfs #PwME #CFS #ME #MyalgicE

$UK ME Association NHS England’s ME/CFS e-Learning Modules FOI Results reveal lack of uptake @Lucibee submitted Freedom of Information requests to find out how many people with government, NHS, academic and other email addresses have accessed or completed these learning modules. Only a tiny fraction of NHS staff and other relevant people have accessed and completed the modules, especially the severe ME/CFS modules. Article | Thread$

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Anil van der Zee

@anilvanderzee.bsky.social

over 1 year 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

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Tom Kindlon

@tomkindlon.bsky.social

5 days ago

ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing by @sunsopeningband.bsky.social et al link.springer.com/article…. Screenshot from latest Science for ME weekly update #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE