Just a friendly reminder that I didn’t become disabled until I was 50. Literally two weeks after my birthday, and I’d ironically been ‘getting fit for fifty’, and was in peak condition. Shit happens. Manic Street warning - if you tolerate this then your children could be next. Or you. Or anyone.

Now Trudie Chalder says "recovery from CFS" through CBT doesn't mean absence of symptoms and getting back to regular life but is more about accepting and coming to terms with chronic illness. Huh??? Isn't that acknowledging that CBT doesn't really produce "recovery"? virology.ws/2026/04/03/t...

Instead of continuing to waste money on pointless psychosomatic explanations, we should push forward with biomedical research to finally achieve real progress for those affected. A shitty situation remains a shitty situation, even if I’ve learned to cope with it. #MECFS

Adults forced a young girl named “Cara” to remove her mask for their comfort. Cara’s mother had cancer and was immune compromised. Cara caught covid, gave it to her mom and her mom died. Imagine doing that to a child because you don’t want to see a mask? It’s appalling.

1) A new article in The Lancet Infectious Diseases calls for "routine patient review of all manuscripts on long COVID, including but not limited to clinical trial protocols and results, pathophysiological research, and opinion pieces"

With Suzanne O’Sullivan claiming a ‘large proportion’ of #LongCOVID is psychosomatic on the Amol Rajan podcast, I’m resharing this clip from 2021 of Dr Xand van Tulleken on BBC Morning Live “You can always find some doctor, some professor to give a quote to a paper saying it’s all psychosomatic…”

11/ “(Contd) There is a particular cruelty in being too sick from a disease to advocate for awareness of that disease on the day set aside for exactly that purpose” #mecfs #longcovid

🧵 Thoughtful blog post by someone with #LongCovid & #MEcfs. Initially focuses on describing the PEM effects of working 3 days in a row before discussing how the whole illness(es) & the effect it's having on his life is making him feel emotionally centerleftstack.substack.com/p/the-debt-c... #PEM 1/

Covid Is Mild And Over So Wash Your Hands To Avoid Breathing It In

Fraudulent claims about "mind-body" behavioral treatments for chronic illness have been made for 4+ decades. This is far worse than what Theranos did, and by now the fault is entirely at the top. None of this pseudoresearch will ever add up to anything, it's ethically and intellectually bankrupt.

“That the universal credit cut will affect new claimants says the quiet part out loud: anyone can become disabled or ill. And every time governments slash the safety net, we can’t know if it’ll be us, a loved one or stranger who will fall through it.” Today’s col www.theguardian.com/commentisfre...

This is Apartheid. It's morally disgusting - and comes at the same time as Israel is committing an ongoing genocide. To see the Labour Government defend Israel repeatedly will horrify the British public - it cannot go on like this.

My good friend Tom Micklem who I first met back in university is running the London Marathon to raise money for Action for ME! @actionforme.bsky.social You can read about it and donate here, good luck Tom!: 2026tcslondonmarathon.enthuse.com/pf/tom-micklem

A UK man with ME is fundraising for SequenceME, a deeper look at the DecodeME samples (whole-genome sequencing study). www.justgiving.com/page/gregsan... Screenshot is extract from his story where he argues there has been a lack of investment in research #MEcfs #PwME #ME #MyalgicE

And incredibly articulate and moving account of the awfulness of this illness that leaves you with no memories because you have no life. And where many doctors tell those places to you it is your own fault.

This was such an important paper, and I was dismayed when it did not have the impact that I hoped it would. But unfortunately, that is the way it usually goes for post-publication "debate", when the vested interests are in bed with the journals. #PACEtrial

It's 8th anniversary of this paper A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop. That surely wasn't because the real results weren't as flattering as they had presented them? bmcpsychology.biomedcentral.com/articles/10.... #MECFS

A powerful US spy-tech company linked to genocide in Gaza, ICE deportations, and Trump’s war with Iran is now expanding across Europe into our hospitals, police and data systems. We must expose it and stop its expansion action.wemove.eu/sign/2026-03...

The language in this X post is horrendous. Other than the obvious cruel nature of such rhetoric, student visa ‘crackdown’ is an act of self-destruction. The UK higher education sector is suffering because of this mindless mimicking of Reform.

And btw, I lived with a mild version of this disease for years without knowing it. Doctors told me I was healthy so I believed them & lived as normally as possible, pushing through awful symptoms, never believing or behaving as if I was sick. And guess what? It made me exponentially worse!

So many of us are living with regret because we trusted our doctors.

John got ME the year I was born & for 40 years has suffered enormously & missed out on an entire life while being treated as an unreliable witness to his own body. Now the same thing has happened to me w/ some of the people closest to me blaming me for my disease. How much longer will we allow this?

The morning after Hannah won I was asked time and time again about this. There was no evidence for it. Instead the establishment media fuelled the fire. It was Islamaphobic. And it's because those in power are scared of us ending rip off Britain.

i need ppl to burn this image into their mind of JKR literally bragging on twitter abt an anti-trans Supreme Court ruling in the UK. She’s as cartoonishly evil as it gets. This is where your harry potter dollars are going.

I wrote about the findings from the inquiry about the impact of the pandemic on the NHS, and the mistakes of the first year. I hope it makes you angry - it should make us all angry. open.substack.com/pub/christin...

This evening’s talk will endorse @simonmcg.bsky.social ‘s Considerations on #MEcfs Pathomechanism. Can a proposed mechanism explain 5 features: PEM, other symptoms, female-bias, common infection trigger & relapses? Does any hypothesised mechanism meet all 5? www.eventbrite.co.uk/e/shaping-th...

We will never forget who backed this war.

@tessamunt.bsky.social !!??!! Why are they intent on letting the NHS continue to torture the most severe? They've completely ignored Maeve's coroners findings. There've been at least 2 deaths due to NHS abuse. And god knows how much suffering.

Israel using white phosphorus to scorch earth in south Lebanon, researcher says

1) Had a look at Putrino's trial on "Microtesla Magnetic Therapy" for Long Covid. Unfortunately, I don't think the trial shows effectiveness. They used 44 outcomes that weren't pre-registered or corrected for multiple comparisons so differences might simply be due to chance.

There is a collection for @meassociation.org.uk at David's memorial service which he organised. Literally dedicating his very last act to our plight. #MECFS www.scottishlegal.com/articles/mem...

1/7 Excited to share our new paper co-produced with @simonmcg.bsky.social. We found that previous reports of ME having two age peaks in Norway replicates in two different datasets and across 7/10 European countries we examined, suggesting this is a generalisable- and distinctive- feature of ME.

1) Two age peaks: a fascinating paper confirmed two peaks for when people get ME/CFS: around 16 years old and in the mid thirties. The early onset in adolescence was associated with severe ME/CFS, an infectious onset, and having relatives with the disease. A brief summary...

"Mosley said that, if Reform won the next general election with a 'clear public mandate' to allow NHS data to be used for immigration enforcement, then the company would execute the plan."

This is why Wes Streeting's promises that the NHS data he is giving Palantir won't be misused are utterly meaningless. Even Palantir says so.👇🏻

Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes. academic.oup.com/ooim/advance... 1/ team credits to follow

Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

Everything we need to do to stop climate breakdown, we also need to do for national security. Energy saving, more renewables, more electricity storage and interconnectors, electrification of transport, heating, cooking and industrial processes, plant-based diets. We win on all fronts.

1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years. A longread with separate chapters on: - viral persistence - cytokines - neuroinflammation - antibodies - immune cells such as NK, B, and T cells

The people who are responsible for the bureaucratic mass disabling machine that is GET/CBT for MECFS, including in the stealth forms they sneak through now, are responsible for countless ruined lives. There needs to be consequences and accountability, or it will keep happening.

At the beginning of the pandemic some disabled people felt hope. We saw inclusion and accessibility improve overnight. We saw accommodations put in place that we had spent years begging for. We saw the world adapt. That hope was ripped away during the rush back to normal. It still hurts.

ℹ️ Controversy in NL as government-commissioned research into ME/CFS will not be allowed to used patented drugs. This does not apply to Long COVID (currently Sonlicromanol is being trialled)! Dr. Jeroen Den Dunnen has had to scrap a grant proposal because of this.

Palantir CEO promises that his technology will reduce educated women's economic and political power newrepublic.com/post/207693/...

I just can't get over the fact he's just coming out and SAYING this shit.

2/ Disappointing information about ME/CFS treatment trial fund in the Netherlands #CVS #MECVS #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome www.linkedin.com/posts/jdendu... @drdendunnen.bsky.social

1) Interesting study showing that a brain infection in mice can lead to loss of synapses and altered excitability of neurons that outlasts the immune response against the virus. Changes are induced by interferon-gamma and involve epigenetic remodelling in the hippocampus.

My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...

#FlashForward to March 2026 - NHS is *still* 'failing' ME patients. There is still no specialist service, particularly for severe and very severe ME. There are still doctors who do not recognise ME and stigmatise against it. UK Government has still not pledged any funding for treatment research.

Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

1) "Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK and patient reports of iatrogenic harm, the RACGP guideline [..] should be withdrawn immediately."