Do we have an idea of what % of people have ME (or ME/CFS) these days, both Long Covid ME and the other kind? I've read some wildly different figures, from 0.6% to 6%!

The BBC has covered our study on medical power and #LongCovid. It’s a shame they didn’t name me and got my university name wrong, but nonetheless, good to see some MSM attention www.bbc.com/news/article...

Substack post: How common is Ehlers Danlos syndrome? It's surprisingly hard to find out. mecfs.substack.com/p/how-common...

New substack: 'How medical training promotes medical gaslighting'. mecfs.substack.com/p/how-medica...

Doctor Very Confident He Is Right About You

Does anyone in the UK know how to get LDN from Dickson Chemist's? I tried to figure this out years ago but I couldn't work it out. They're a chemist's, right? So you need to already have a prescription from a doctor, but there aren't any doctors who will give the prescription, so...? #pwME

New substack post: "This is endometriosis" is a stunning, award winning short documentary with resonances for people with ME. mecfs.substack.com/p/this-is-en... The documentary is here: www.youtube.com/watch?v=1q-u...

New substack post: "Freud's Hysteria, Part of the history of psychologizing physical illness". mecfs.substack.com/p/freuds-hys...

Please share this around #MedSky. Far too many clinicians are still practicing like it's 2019. #SciSky #StandUpForScience

New post: Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong) mecfs.substack.com/p/some-peopl...

Thinking that *chronic fatigue syndrome* is *chronic fatigue* is like thinking that jelly fish are fish, or that wine gums contain wine, or that a cat burglar is a person who steals cats.

Clip 2 from Austrian TV report about Samuel ME/CFS was largely ignored in Austria until Covid. The hallmark symptom is that exertion can make the illness worse. Many doctors are completely unaware, even though patients have been saying this for decades. #MECFS #LongCovid

Coming Soon: 2025–2026 UCSD ME/CFS Essay Contest Winners! Help us amplify these student voices advancing care for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). We’re actively seeking media coverage. Please DM us or email [email protected] with any contacts.

Update on Savannah: They are now urgently seeking any UK doctors or hospitals willing to provide TPN and restart cyclizine. If no safe option is found, they are even considering treatment abroad. If you have suggestions, please fill in the form tally.so/r/81KxGO

New post exploring how sexism, bad science, and an inability to acknowledge uncertainty, can lead doctors to treat everything they don't understand (or prefer to ignore) as psychosomatic. Specifically: somatic symptom disorder (SSD). mecfs.substack.com/p/somatic-sy...

@tessamunt.bsky.social did you speak to @ashleydaltonmp.bsky.social on this? Savannah cannot wait for a new service. She has been without nutrition for 8 WEEKS in constant agony and is literally dying. You MUST force the hospital to listen to her expert & restore pain meds and nutrition. #mecfs

we need to talk about that Ring Super Bowl ad

"Ultimately, all disabled people risk confrontation because nobody can live up to the impossible stereotype required for being truly ‘deserving’."

I watched Jennifer Brea’s excellent documentary Unrest today and I highly recommend it for anyone interested in learning more about ME/CFS and the medical dismissal and gaslighting ME patients face youtu.be/RLQNfsTih10

BREAKING: Another rapid response action! Indivisible Vancouver is leading a protest rally THIS FRIDAY January 30 against Jim Pattison, who is planning to sell one of his warehouses in Virginia to DHS/ICE to become a human processing facility. #boycottpattison #ice #iceraids #protest

I'm setting up a new account, @lighterkatiej.bsky.social, for the non-ME/CFS aspects of my life, mainly books & films I love and some politics. I'm unfollowing a bunch of people here but rest assured, I'm going to follow you on the new account!

Just outside Seattle on I-5 🤘

Reminder that, in recent days, children have rallied and protested for their freedom inside an ICE detention center where water has been described as "putrid" and meals reportedly contain “bugs,” dirt, and debris. This is where the kidnapped 5-year-old Liam Ramos is being held.

Neil Young is from my hometown, and he just took gave his entire music catalogue to Greenland! www.youtube.com/watch?v=n2Mt...

The best compliment in the world is when someone discovers your account and likes a bunch of old posts. 😀

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids! Please scroll to the end to copy/paste an email to NHS Trust Chief Executive! Please share! www.thecanary.co/uk/analysis/... #pwME #MECFS #SevereME

I've sent an email, I used the one from the Canary article and changed it a bit. This is so heartbreaking. 💔💔💔

With so many of us watching the tremendous mobilizations in Minneapolis, culminating in the call to action against ICE today, I wanted to share some of what I have gathered from talking to comrades in Minneapolis over the past few weeks. A few things stood out:

I'm deeply grateful to all the people in Minnesota who are standing up for humanity and decency by taking part in the protests and the general strike today.

What we’ve seen in Minnesota should make you furious, but it should also inspire you.

I'm still coming to terms with the fact that managing my chronic illness is a full-time job. I'm basically a full-time carer, but the person I care for is myself. #moderateME

“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome link.springer.com/article/10.1...

It's a good day to stop using Hootsuite and tell them why.

Godwin is famous for Godwin's Law, which says that if any internet discussion goes on long enough, someone will call someone else a nazi, which will end the discussion.

Simon Wessely used intimidation to change how an author wrote about ME and Long Covid. The threat of a law suit was likely a bluff, but still had the desired effect. This is how Wessely operates.

Oh, I do love this. They weren't wrong back in 1979.

What disability and illness advocacy groups are doing good work in Minnesota right now in terms of direct aid and background activism/advocacy?

I feel like at this point we're all living in Star Wars Andor? Like some people are having to deal with actual Stormtroopers, and others are just more or less living normal lives but knowing the Stormtroopers could come at any time.

This is a wonderfully compassionate and real German documentary about ME, narrated by a young man whose friend developed ME and is now very severe. It covers what life is like with severe ME, and the ignorance of doctors and the lack medical care. www.youtube.com/watch?v=XTWI...

I know people on Bsky know this but I hope it filters out: The feds are OCCUPYING the Twin Cities. This is a blockade, a siege. They are shutting down economic and civic activity. They are conducting "papers please" stops. They are criminalizing being a bystander/witness. You could be next.

when ICE asks you questions about your neighbors, you've never met your neighbors in your life. you've never even seen them from afar. neighbors? what neighbors?

Yup, we are 100% living in a science fiction story.

My friend Alice Wong was a civil rights & disability justice activist, community organizer, & author. She was unapologetic in her pursuit of building a more just world & shining a light on issues society hesitated to address. She is deeply missed, but her legacy carries on.

Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome @sunsopeningband.bsky.social Todd E. Davenport, @scheibenbogen.bsky.social Carmen Scheibenbogen, Mark A. Zinn, Mary Dimmock, Janet Stone, Karl J. Tronstad, Øystein Fluge, Jonas

The @uwofa1 - University of Western Ontario Faculty Association - is quickly becoming a leader in post-secondary education messaging about the equity implications and importance of masking as an integral layer of C19 and flu mitigation. Let’s show them some love, folks! ❤️🙏

Thanks for this detailed and thoughtful 🧵, it's incredibly valuable that you picked up on and described all the nasty little tricks the author used to misrepresent ME and Long Covid and other illnesses.

Oh crap. I'll admit I thought this looked like a good one and shared a couple of posts about it. Yikes.

I'm sure other countries - the UK, the US, Canada, and others - would come up with similar figures if they did the same math.

Today in @thesicktimes.org: An excerpt from @emendenhall.bsky.social's new book "Invisible Illness" detailing the long history of post-viral illnesses and their impact across the globe and time. thesicktimes.org/2026/01/08/a...