58 organisations. 1,200 individuals We're incredibly grateful to everyone who supported our open letter to the Royal College of Psychiatrists. This coalition brings us together from across the community. A powerful reminder of what solidarity can achieve. Update & full 💌👇🎙️

Why do I keep banging on about exercise in #LongCovid and PEM? Because people still don’t understand it, specifically people in positions where they can do real harm - directly to the people enrolled in these studies, and indirectly by poor quality research feeding into articles like the WIRED one

Let's Find A Kinder Way To Blame Long Covid Patients

Meet the ‘superdodgers’: The few who never had COVID Researchers say there's a big difference between people who think they’ve never had COVID and those who truly haven't. Data suggest only 2–3% of people worldwide avoided infection, with many unnoticed cases due to mild or asymptomatic illness.

On PEM, exercise and deconditioning #LongCovid #ME

That WIRED article dismisses the concerns patients raise about research into exercise as based on a false belief If your starting point is not believing what patients tell you about their own bodies, you shouldn’t be surprised if patients don’t support your arguments and conclusions #LongCovid

A great listen from @longcovidadvoc.com with the historian and philosopher Elinor Cleghorn discussing the issues around her book ‚Unwell Women‘ #LongCovid #ME podcasts.apple.com/gb/podcast/p...

‚Hospitals in England ranking highly for empathy ‘have better patient outcomes’ Research suggests NHS trusts with higher empathy ratings also benefit financially and have improved staff wellbeing‘ So, what are the conditions allowing empathy to flourish? #NHS www.theguardian.com/society/2026...

This is such a good summary about the issues with the Wired article.

There are hundreds of thousands of publications on SARS-CoV-2 infection. They demonstrate multi-system pathology in acute and Long Covid through some of the most sophisticated scientific approaches in medical history. These are irrefutable facts. #LongCovid

So I read the @wired.com story about long covid The argument seems to be: “no one wants to believe this minority of patients over here, and that’s hypocritical. But all these other patients over there are *hysterical* & I won’t even bother talking about their experience” Did I get that right?

listen, I like Wired a lot! People I love and respect work there. And They do great work, generally speaking. But this just ain’t it. Anyway, If you’re reading this thread and you want to know more about why that piece so bad, this is a good read: open.substack.com/pub/longcovi...

Thank you @casutherland.bsky.social for giving a detailed explanation about how placebo is used in clinical trials for assessing the efficacy of a proposed treatment that is being studied #LongCovid

That WIRED article dismisses the concerns patients raise about research into exercise as based on a false belief If your starting point is not believing what patients tell you about their own bodies, you shouldn’t be surprised if patients don’t support your arguments and conclusions #LongCovid

On XTwitter, tern aka @1goodtern.bsky.social used his sharp mind to analyze the many issues with that LC article published recently by Wired. Here's a 🧵 I assembled of the first 50 of tern's "ten clues" (yes, tern often under-promises & over-delivers😉): docs.google.com/document/d/e...

BBC: ''Pavement potholes make me feel invisible'' 'Bebe Newton, from Ilkeston, Derbyshire, said it was "just pothole after pothole"....due to her conditions, which include fibromyalgia, ME/CFS, Postural Orthostatic Tachycardia Syndrome (POTS)...' www.bbc.com/news/article...

From @mayalongcovid.bsky.social #MEcfs #PwME #CFS #MyalgicEncephalomyelitis

Shoutout to some excellent German psychologists working on #LongCovid - check out the link for who they are

The CDC made a public awareness ad about #MECFS in 2007. I’m not aware of a similar public health campaign since, despite increasing numbers linked to long Covid and the lack of awareness that exercise can make people worse.

#MECFS is a “medical” and a “social catastrophe.” — Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation. One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.

We have guest writer Dr Elke Hausmann examining the controversial Levinovitz WIRED article which has sparked significant concern for its portrayal of Long Covid, recovery narratives, and brain retraining approaches. 🎙️Audio available open.substack.com/pub/longcovi...

Why are RECOVER’s first round of #LongCOVID clinical trials failing? In this episode of Still Here, producer @melaniemarich.bsky.social talks to @betsyladyzhets.bsky.social about why NIH trial results have left many patients and advocates in the Long COVID community disappointed. 🎧 bit.ly/4uNNdTD

Hey @wired.com, how about interviewing neuroscientists who are really studying the brains of people with #LongCovid? "When the brain gets stuck in a feedback loop of fight or flight" What does that even mean? Patients deserve explanations grounded in biology, not vague buzzwords. #Pseudoscience

Watching this was so moving because I never saw anyone nurse Maeve like this. It was all left to me, alone, round the clock for seven months - including during hospital admissions. I couldn't do it all. We needed help. There was no help. Getting her out of hospital was the best help, but without a

“Chronic fatigue is not the only symptom. It is one symptom amongst so many others.” Dr Ranj explains what ME/CFS is, why the term Chronic Fatigue Syndrome does not reflect the reality of the illness, and why many patients prefer the term ME.

More misguided than illuminating I think. Here is some very pertinent info about the article's quality (or lack thereof).

Update: The email of the editor of the Alan Levinovitz Long Covid WIRED article whom letters and concerns can be directed to is available publicly here: jasonkehe.com 💌 [email protected]

Gute Gespräche mit @privilegienschreck.bsky.social und @buechnerronja.bsky.social zu #LongCovid und Psychologisierung 🙏 (Achtung, es werden immer mal wieder zwischendrin ein paar irritierende Musiktöne eingespielt) podcasts.apple.com/gb/podcast/s...

‚I haven't met someone with Long COVID who has not yet tried exercising before consulting with me, a physical therapist.‘ @sunsopeningband.bsky.social on exercise in #LongCovid in response to that WIRED article likeannopeningbandforthesun.substack.com/p/revisiting...

‚…perception is not simply constructed; it is biophysically constrained.‘ Thank you @sunsopeningband.bsky.social for this excellent response to that WIRED article #LongCovid likeannopeningbandforthesun.substack.com/p/revisiting...

For those who have read the WIRED article on #LongCovid and want to know what it’s really like living with this condition, do listen to this great interview with @oonaghcousins.bsky.social which gives a much better insight into life with #LongCovid podcasts.apple.com/gb/podcast/r...

Huge thanks to @sunsopeningband.bsky.social for this powerful piece. “Misperceiving Long COVID as a problem of misperception has real consequences…it distracts the narrative away from help and toward additional marginalization.” #LongCOVID likeannopeningbandforthesun.substack.com/p/revisiting...

Pity the author didn't review the negative studies in PAIS. Brain Retraining doesn't work. New preliminary data from the AIR trial is a good example. The effect is similar to natural recovery & fluctuations of the disease. Gupta scored even a bit worse than TAU. www.linkedin.com/posts/me-cfs... 🧠

For no reason at all, today we're reupping this post on its two-year anniversary: a Last Week Tonight parody about the use of the "Lightning Process", a form of neurolinguistic programming, in #MECFS and #LongCOVID. How is This Still a Thing?

I was planning to write a long thread on the Wire article about long covid, but @longcovidadvoc.com already did a great job. You can find a non-paywalled version of the article in post 22 of the below thread. I do have some additional criticisms though, after diving into some details. 🧵 1/14

BBC Morning Live addresses complaints after Dr Oscar Duke said that Chronic Fatigue Syndrome was “probably the best way to describe” the illness. Feedback from viewers outlines how it trivialises the illness, is just one symptom, and it does not reflect the reality of #MECFS.

1) In this interview with David Tuller, Prof. Chris Ponting gave more info about the SequenceME & Long Covid project that received £4.75 million from the UK government. It will measure the whole genome of ME/CFS patients in high resolution so that rare mutations can be found.

Thank you to @michaelhobbes.bsky.social for highlighting our position on brain retraining as dangerous pseudoscience in the Wired article. It is an awful thing to do to someone - to claim their Long Covid is rooted in their trauma, emotions & mental framing.

We don’t decondition because we don‘t want to exercise. We want to exercise, but we can‘t. We are very aware of the dangers of deconditioning, one of the worst aspects of this illness, alongside the ignorance of PEM on display in this article. Clearly nothing has been understood. #LongCovid

BMA (British Medical Association) OMC (Occupational Medicine Committee) Newsletter Summer 2026 We‘re still no further… #LongCovid i.emlfiles4.com/cmpdoc/2/5/8...

📢 Join the PRIME ME/CFS Research Involvement Hub! Today, PRIME have launched their new ME/CFS Research Involvement Hub which aims to build a virtual network of people with lived experience of ME and match them with research projects to help shape the delivery of those projects.

“They’ve had their lives completely demolished by this illness.” Millions are living with #LongCovid while society has moved on. Former Team GB rower @oonaghcousins.bsky.social developed #MECFS following Covid and had to retire.

We asked “what would make school life easier?” Here’s what we heard. www.longcovidkids.org/post/departm... #LongCovidKids #Education #QuestionsAndAnswers

#Bewegung #LongCOVID @longcovidde.bsky.social @fisiocamera.bsky.social longcovid.physio/german-long-...

#Pacing #LongCOVID @longcovidde.bsky.social @fisiocamera.bsky.social longcovid.physio/german-long-...

Sichere Long-COVID-Rehabilitation #LongCOVID @longcovidde.bsky.social @fisiocamera.bsky.social longcovid.physio/german-long-...

Auswirkungen von #LongCOVID auf den Alltag @longcovidde.bsky.social @fisiocamera.bsky.social longcovid.physio/german-long-...

Heute veröffentlicht 🔔 Die vollständige Long-COVID-Videoserie auf #Deutsch @longcovidde.bsky.social @fisiocamera.bsky.social Zu den neuen Episoden gehören: ⚓️ Auswirkungen von #LongCOVID auf den Alltag 👷‍♀️ Sichere Long-COVID-Rehabilitation ⚖️ #Pacing 🏃‍♂️ Bewegung longcovid.physio/german-long-...

Vor einer Weile haben @buechnerronja.bsky.social und ich mit den lieben Menschen von SodaKlub über Stigmatisierung und Psychologisierung von ME/CFS und Long COVID gesprochen. 1/

Reminds you of something? #LongCovid