Profile avatar
medidier.bsky.social
Severe ME after covid infection Feb'22. Young dad. Bedbound. 🛌 #MillionsMissing #pwME #ThereForME #GreatestMEdicalScandal #PEM 🇬🇧🇲🇫🇪🇦🇧🇪
350 posts 378 followers 763 following
Regular Contributor
Active Commenter
Posts 20 Comments 30

My photo project about ME/CFS is now on Flickr Trying to get these images out into the world, so any shares there or on other platforms much appreciated! www.flickr.com/photos/20215... #Photography #Flickr #MECFS #pwME #LongCovid #DocumentaryPhotography

submitted 1 day ago • 1 comment

In case you needed another reason to hate Epstein-Barr virus- it looks like it might cause primary sclerosing cholangitis: www.nature.com/articles/s41...

submitted 2 days ago • 5 comments

Learning about myalgic encephalomyelitis really changed me. The full depth of suffering associated with this horrific illness is right out in the open for anyone to read about and/or to develop themselves, and our society seems to have decided to address the problem solely by stigmatising patients

submitted 1 day ago • 8 comments

All presentations of the #mecfsconference are now online! Thanks again to @scheibenbogen.bsky.social for organizing this, and bringing so many experts together. Check out the videos at: events.mecfs-research.org/en/events/co.... #MECFS #LongCovid www.youtube.com/watch?v=k4m4...

submitted 1 day ago • 2 comments

Perspective: host factors variants and the underlying causes of long COVID www.frontiersin.org/journals/med... Image is from the latest Science for ME weekly update #LongCovid #PASC

submitted 2 days ago • 2 comments

đź“Ł Current PIP criteria already fail people with energy-limiting conditions. Proposed changes will deepen this injustice, with devastating consequences. @joplatt.bsky.social backs our call for a system that supports people with #LongCovid, in @bigissue.com.

submitted 2 days ago • 2 comments

“NIH researchers found that exercise triggers mitochondrial DNA release in muscle, activating immune pathways that boost fat-burning fibers and fight obesity—but this same response may worsen fatigue in long COVID and #ME/CFS through immune overactivation.” www.cell.com/trends/endoc...

submitted 2 days ago • 1 comment

A groundbreaking documentary on ME/CFS is now available to international audiences German investigative documentary on ME/CFS, Chronically Ill – Chronically Ignored, is now available for international audiences online. www.thecanary.co/uk/news/2025...

submitted 4 days ago • 0 comments

"The gap between what I was living and what others could comfortably acknowledge was deeply isolating." Oonagh sums up living with ME in one stark sentence. It's bad enough to have an illness with a QoL worse than stage 4 cancer, only to be abandoned by most cos they're uncomfortable with it.

submitted 5 days ago • 0 comments

"To rest in the context of chronic illness demands the endurance of immense grief"... Another brilliant and poignant update from @thereforme.bsky.social by @oonaghcousins.bsky.social www.thereforme.uk/p/the-import...

submitted 5 days ago • 1 comment

“The ME community have suffered terribly over the years,” she says. “As a doctor, I look back and I go: gosh, we were almost trained to believe that these conditions are psychological. That’s how we’re taught, because you can’t explain it… 1/2 @binitakane.bsky.social @samwollaston.bsky.social #MECFS

submitted 25 days ago • 1 comment

1000 windows from around the world. All here www.andrevicentegoncalves.com/photography-...

submitted 10 days ago • 13 comments

Nice poster from Rob Wust and colleagues showing micro vascular dysfunction & basal membrane changes in skeletal muscle in ME and Long Covid. Reduction in oxygen & nutrients to muscle tissue contributing to fatigue and PEM.

submitted 10 days ago • 5 comments

Today’s #ThereForMe campaign update follows a thread of solidarity within and outside the ME and Long Covid communities. Link in next post 👇

submitted 12 days ago • 1 comment

Forward! đź‘Źđź’Ş www.thereforme.uk/p/campaign-u...

submitted 12 days ago • 0 comments

As #pwME I am grateful of scientists 'answering' this. But by now this should trigger a legal response, too. In 2025, publishing that a person dying from #ME could have 'prevented' it by 'being positive' - should simply fall into the realm of defamation and slander.

submitted 12 days ago • 2 comments

Huge thank you to everyone who participated in the #MECFSis campaign, shared, or simply witnessed. You made this what it is. 🙏 Awareness Month may be over, but we’re not done. The need for visibility, funding, and change continues all year long. 🔗 See more voices on the @openmedf.bsky.social site

submitted 12 days ago • 0 comments

The #mirrorbox starts its tour TODAY, taking the voices of people who cannot be there, to their chosen location, to connect with those that are there. It’s first location of #TroopersHill in #Bristol 11-6 today, June 1st 2025 iwouldbehereificould.com #iwouldbehereificould

submitted 14 days ago • 1 comment

Charting the Circulating Proteome in ME/CFS: Cross System Profiling and Mechanistic insights www.medrxiv.org/content/10.1... 1/5-Our new preprint on the blood proteome of ME/CFS is a deep dive into the pathophysiology. ~7000 blood proteins were measured in 54 ME/CFS and 27 healthy.

submitted 12 days ago • 1 comment

1/1 Ziemlich wichtige Studie, mit der objektiv spezifische Veränderungen der Serumproteine hinblicklich Immundysregulation, Minderperfusion und gestörte Mitochondrienfunktion nachgewiesen werden kann: www.medrxiv.org/content/10.1...

submitted 13 days ago • 2 comments