The estimated number of deaths linked to long waits in English Emergency Departments has surged almost tenfold over the last 10 years. This shocking statistic is from our State of Emergency Medicine in England report, which has been published today.

Why Are We Not Allowed To Promote Therapies That Don’t Work And Make People Worse

“The deeper problem is older than any trial. The behavioral model of this illness was built by quietly erasing its defining feature. The original, documented hallmark was an abnormal failure to recover after exertion, the thing now called post-exertional malaise. The model replaced it with ordinary

The MECFS situation is not a matter of brave psychobehavioural researchers and dangerous delusional activists. It is more like the situation with smoking or global warming - a truth about real and tangible harm suppresed by vested interests.

Before I followed a psychobehavioural approach for MECFS, I was mild, able to walk miles on a good day, and no less deconditioned than your average office worker. Since that approach destroyed my life and baseline, I have been severe, 95% bedbound and very limited in what I can do for five years.

The way the entire British media is suddenly discussing 'two tier policing' as if it is a real thing worth seriously debating, rather than the obvious far-right white supremacist fantasy it has always been, is very alarming

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

What the WIRED article got wrong… Though he has talked to people inside the illness, and still wrote that article. But maybe his mind was already made up by the time he talked to us. #LongCovid

Highlights from recent German TV that looked at brain retraining for #MECFS. A doctor with #MECFS says the programme made her feel she just had to keep trying harder. She eventually suffered a severe crash. She is “angry” and says that these programmes are endangering people.

The worst possible way to honour the memory of Henry Nowak, victim of a horrible murder and a grave misjudgement by the police, is to do what Nigel Farage appears to want: turn it into an excuse for racial conflict.

Brain retraining is pseudoscience garbage and wired should be ashamed of itself for publishing this crap.

“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Clip from Swiss TV

A part of my book, Who Wants Normal?, that felt important to include was cultural prejudice around disability aids. I spoke with people who endure pain or stay indoors rather than use one. We can talk about helping people keep healthy as they age without stigmatising “ending up in a wheelchair.”

The lie/myth of deconditioning being a cause of symptoms in ME/CFS has been around for decades, has never had any real evidence for, has been thoroughly debunked, and it's still widely believed and asserted. They call this "holistic" evidence-based medicine. 🙄🤦‍♂️

“It made me much worse… Most people I know with ME have exactly the same experience with it.” Annette Barclay, a patient with #MEcfs describing her deterioration following Graded Exercise Therapy.

What some of us have been warning of for decades is happening, faster and fiercer than most imagined, even in the mildest and most temperate corners of the world. #ClimateBreakdown

🥵 The #ClimateCrisis is here. ♨️ Labour are delivering nothing but warm words. ❌️ And Reform want to scrap climate action all together. 🌏 Only the Green Party will take the action needed to reduce our emissions and mitigate the worst effects of climate breakdown.

I spoke to @theipaper.com recently about the battle I’ve faced the past two years covering the spiralling costs of James’ care. Since the interview our local authority has offered a new care package that will take the pressure off - but still doesn’t reflect James’ 24/7 needs.

Heartbreaking. Reminder here we are still locking up in mental health wards for no reason about 2,000 autistics, many young with capacity too. Average time they are locked up 5 years. Parents been stopped from seeing them. 😡 www.bbc.co.uk/news/article...

Water privatisation has been outright theft. Whoever is next PM must commit to ending this scandal and take our water back into public ownership. No more failed regulation. www.theguardian.com/business/202...

“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.

#GMB: "Children are now 3 times more likely to grow up in poverty despite all adults in the household working full time"

This shouldn't need explaining. Human rights don't stop at political boundaries. Suffering is no less real when your team causes it. We should be 100% consistent in opposing violence, prejudice and dehumanisation, wherever they occur and whoever the victims and perpetrators may be. Thank you.

Consistent humanism means opposing the genocide in Gaza, AND antisemitism. It means opposing the US/Israeli invasion of Iran AND the Iranian regime's murder of its own people. It means opposing the US/UK invasion of Iraq AND the Russian invasion of Ukraine. It means confronting violence everywhere.

This is all too familiar. When I discussed Assad's horrors in Syria, people a bit like this called me a "warmonger". When I confronted apologists for Russia's invasion of Ukraine, it was "US imperialist". Now, for lamenting antisemitism, it's "Zionist". In truth I'm against all forms of aggression.🧵

It's not enough he had his conviction for a crime he admitted overturned. Now they're apologising to him.

1) With genetic evidence pointing to the brain, there is renewed interest on the S4ME forum for the buspirone tests done in the 1990s. A couple of small studies found an increased prolactin response in ME/CFS patients but these findings were never studied further.

4 key things about the new £4.7m ME/CFS DNA study DNA uses 4 chemical letters — A, T, G and C — to encode the instructions to build and run a human. The genome contains 3 billion of these letters. 1️⃣ This study uses full genome sequencing to read all of them, while DecodeME…

I can never forgive this UK government for getting on the anti-immigration bandwagon. We are real people with real lives directly impacted by this hostile environment. How can I not feel passionate about rejecting such pandering?

Sleep hygiene can be just as “damaging as graded exercise” for patients with #MECFS Dr Nigel Speight describes a girl with severe sleep reversal. She walked into hospital and was carried out a month later needing to be tube fed.

"Anthropic blames dystopian sci-fi for training AI models to act evil." Oh really? So the stuff you stole because you are a dystopian fucked up company has fucked up your dystopian fucked up company?

Most viewed on the Guardian app this morning 🙄

An excellent blog by @simonmcg.bsky.social which explains what the £4.75 million that the UK government has given to Sequence ME and Long Covid will be used to do: mecfsresearchreview.me/2026/05/12/d... You can donate to the study here: www.actionforme.org.uk/research-cam...

"What’s driving me crazy, then, is not the idea that AI exists or that people are using AI. It’s that I have a finite time on this earth that I mostly want to spend interacting with other human beings."

The hi-tech nanopore @nanoporetech.com DNA sequencing method behind the £4.7m study to help crack #Mecfs is simple at heart. 1. Thread a strand of DNA through a tiny hole in a membrane- 2. each DNA letter passing through the pore creates a disticnt signal 3. read off the DNA sequence

This is monumental news. Apparently the 6000 whole genome sequencing (WGS) samples funded here is the largest WGS Genetic Study of a single illness to date. This feels very symbolic, ME/CFS Research going from lagging decades behind to being on the cutting edge. Hopefully this is a turning point.

#MEAwarenessDay #pwME If healthy people understand what it took to survive alone, in the dark, in an utterly broken body they would not question our strength. They would only ask how we endure.

The UK Government award covers the whole genome sequencing of 6,000 #pwME from @decodemestudy.bsky.social project, but no funds for the people needed to do the sequencing. We already benefit greatly from a kind donation from WE&ME, but further amounts would help greatly🙏 The total project is £20m.

This isn’t a story about a disease that slipped through the cracks. It’s a story about bad science, harmful treatments, and an illness that was wrongly framed as psychological.

Today is #MEAwarenessDay ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.

🚨 Major funding secured for Sequence ME & Long Covid, a DecodeME project. On #WorldMEDay, we’re thrilled to share that the study has received £4.75 million from the UK government, signalling a transformative step towards uncovering the biological roots of ME/CFS and Long Covid.

Great news from the UK🍾 £4.75 million to do whole-genome sequencing on 6000 DecodeME samples www.thetimes.com/uk/healthcar... (paywall) Unfortunately it's not enough to analyse the full sample People can find out more about SequenceME & donate here megenetics.org.uk/our-projects... #MEcfs #PwME

Reform UK’s policy in Suffolk is not to engage in any way with local press. Coincidentally @eastangliabylines.co.uk sent all the candidates across Suffolk and Norfolk the same set of questions. Reform were the only party not to respond. They don’t want to be held to account.

Still doing home visits for research into: -platelet activation -miRNAs -cellular metabolism -immune function in pw/ ME/CFS or w/ Long COVID🩸🔬 If you're a woman with ME/CFS or Long COVID in VIC, Aus + want to be contacted, please fill in this form: redcap.latrobe.edu.au/redcap/surve... 1/2

Germany absolutely rocking and making the rest of us blush miserably... and it is just day 8 of the month across 25 cities... thousands of people in support of #ME... each cardboard, each message, each picture, really touching, it does make oneself feel less alone. DANKE! 👀👀 @longcovidadvoc.com

Wes Streeting wants new laws to force your GP to share your medical records. The bill was not in Labour's Manifesto and Palantir has explicitly said, under a new Government, it would be happy to use medical data for other purposes. Be afraid.

Jewish people have described their own traumatic experiences of anti-Semitic behaviour by Farage. He has effectively called them liars. By inviting him, the BoD is taking his side. They absolutely would not do the same with anyone on the pro-Palestine left. It is blatant hypocrisy and it stinks.

Greens have taken control of Norwich. Their first council of the day. But they will definitely win Hackney too and possibly a couple of others in London.

Exercise is not beneficial for everyone. Graded exercise therapy was the dominant treatment for #MECFS for years, but NICE withdrew it in 2021 after finding no reliable evidence it was effective, the research was flawed, and there was considerable evidence of harm.