The BBC Lifeline Appeal for #ME from Action for ME is now available on YouTube. youtu.be/qmDSP8idEXw?...

How England’s vulnerable children became a gold mine for investors ft.trib.al/KdUMFU8

I’m guessing that Dr Oscar Duke got no further than looking at the first two symptoms of #ME on the NHS website when he appeared on @BBCMorningLive on Wednesday. The website needs changing as a priority & the programme needs a full feature on ME with Dr @binitakane.bsky.social Patients are dying!

Very Severe ME now has a SNOMED CT code, but still no specialist NHS pathway. #SevereMErgency #VerySevereMErgency

We like to imagine that voters make decisions on the basis of accountability and attribution. But they never have, and never will. It's time to drop the myths and build our politics on things that work, such as inspiration and transformation. This week's column. www.theguardian.com/commentisfre...

Far right newspapers are trying to run a smear campaign against Misan Harriman. We can't let them. Add your name to the open letter, and stand against hate and division. goodlawproject.org/s/4ca10b

It’s very hard to digest how the explicit antimuslim racism on display in the streets of London on Saturday is passing by with no consequences. Very hard not to feel like we’re regarded as second class citizens and fair game to be sacrificed on the alter of pacifying angry voters. Very hard & scary.

Caroline visited my daughter Kate many times taking samples for the UK Biobank. She’s an extraordinary woman in that she knows exactly how to treat a severe #ME patient. If only others Nurses and Drs could follow her example.

DoGE "accidentally" cancelled Ebola protection whilst raiding voter data.

Forcing Farage to talk about the Brexit disaster is key to defeating him inews.co.uk/opinion/forc...

A leading 'Raise the Colours' flag activist, who claims to be fighting to "protect our women" from migrants, has pled guilty to assaulting a woman bylinetimes.com/2026/05/18/f...

THE INVISIBLE DOCTRINE w/ @georgemonbiot.bsky.social now has 200K+ views on our FREE Youtube link. Neoliberalism, do you know what it is? "This may be the most important documentary people ever watch.” - Martin Carr, martincar.co.uk www.youtube.com/watch?v=gR4e...

The Hub is the final key aim of the PRIME project and will create the world’s first network of at least 100 people with lived experience of #ME, supported and trained as PPI contributors to work alongside researchers. I’ve signed up! primehub.fillout.com/sign-up?utm_...

Amazing musical performances and messages from Prof Chris Ponting @cgatist.bsky.social and @tessamunt.bsky.social All donations to the ME/CFS research at the University of Edinburgh.. www.justgiving.com/page/i4bsc26

Keir Starmer's political failure comes down to one issue above all others: his unwillingness to put the public interest ahead of the demands of the oligarchs, corporations and foreign governments who lobby him. Whoever replaces him had better be prepared to stand up for us, or Labour's finished.

Where’s the fury about rightwing antisemitism? The newspapers that call out leftwing antisemitism publish antisemitic cartoons and champion politicians with a record of antisemitic statements. So who is holding *them* to account? This week’s column. www.theguardian.com/commentisfre...

Congrats to all involved in securing this critical funding! However, I understand that it is only sufficient for the next phase with a further £15m needed for all that is envisaged. SequenceME is reliant on charities and personal donations to fundraise for this. Sonya Chowdhury called it well…

While all eyes are on Farage, we're overlooking something even worse: the building of the very tight and truly vile operation that is Restore Britain. This excellent essay/report by Simon Pearson should wake us up to the threat - and to what exactly it is. simonpearson1.substack.com/p/tory-30

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...

Yesterday #MEAwarenessDay we tried to draw attention to our illness, #ME, in the hope that healthy people would care and start to advocate for us. To the MSM, government, social media, medics. Today most of us can barely move from our effort and its uselessness. Anyone can get ME! Anyone care?

The Heritage study funded by the government states the annual cost to the U.K. economy from #ME and #LongCovid exceeds £12 billion. That’s £32.8 million a day to the U.K. economy. Yesterday they pledged £4.75 million for research. This makes no economic nor humanitarian sense.

‘The withholding of lifesaving care is not a theoretical concern: it is a documented, devastating outcome of misapplying psychosomatic models to a serious, organic illness.’ BMJ opinion piece on treatment of #ME patients. Too many die Too many suffer for decades. #MEAwarenessDay

DecodeME has received £4.75M in UK government funding to sequence 6,000 DNA samples. This is phase 2 of a wider project, to sequence 9,000 #MECFS samples and 9,000 #LongCovid samples. Full article in The Times: archive.ph/2026.05.11-2...

The quid pro quo of a Starmer leadership was that - fine - we weren't getting a storyteller or a charisma powerhouse, but we'd at least get serious, competent leadership committed to delivery. In fact we got neither.

#ME patient looks at a red object, “it’s red” she tells the Dr, “you’re wrong” says the Dr, “it’s blue, we’ve run some basic tests which tell us it’s blue so off you go, correct your thoughts and do some graded exercise.” “It’s blue”say the politicians, the press, the insurers. Subject closed!

Absolutely heartbreaking. Hard to find the words to convey the disgust I feel that people are capable of treating a young woman like this, because they can and think they know best despite all the evidence that they don’t. Thank you to all those supporting Savannah. #ME 💙

So the "antisemitism rally" has Richard Tice speaking and a gay man was attacked for wearing a free Palestine badge. Will any of this make the news or be condemned by Keir Starmer?

There are so many #pwME all posting on different social media platforms. This can be good but if the orgs or someone could organise us all to post together with a coordinated message it could really get noticed. Millions of us, one message? How could this work? #ME My brain is treacle today.

Today, hundreds of people went to the streets in over 40 cities (!!!) in Germany to demand better support for Myalgic encephalomyelitis (ME/CFS) patients. One of the reasons I chose Germany as my new home. Very proud of you my German friends. #LiegendDemo #MECFS

Two poems by James Strazza who died this week. He had been suffering with severe #ME since 2019. A rare and sensitive man. It’s incredibly sad that once again we are mourning one of our own. May those that have blocked research and psychologised ME feel the pain of their actions 💙

No one expected Keir Starmer to solve our pressing problems overnight. But what we did expect – and had every right to expect – was that he would lay out a clear vision and roadmap for doing so. Instead, we’ve had drift, appeasement and a startling absence of ideas, values and ambition. 🧵1/6

In Wigan, Reform won 96% of seats on 46% of the votes. In Westminster, the Conservatives won a majority on 35%, while @greenparty.org.uk won 18% of the votes without gaining a single seat. We can’t let this happen in 2029 The time to change the voting system is *now* @makevotesmatter.bsky.social

The Greens win our first ever directly elected Mayor - a huge historic victory! Huge congratulations to Zoë and the entire team. Two party politics isn't dying. It's dead and it's buried. And we're making hope normal again.

Just met a Reform UK voting couple who had no idea that it opposed: Recent rise in the minimum wage End of the two-child benefit cap Expansion of free school meals, free breakfast clubs Help with school uniforms Horrified that they would lose big from Reform How many others voted without knowing?

In other news……the first roses are here. 🧡

The response to two Member’s questions about ME in the House was pathetic. ‘integrated care boards (ICBs) should continue to commission appropriate services for patients with very severe #ME/CFS as needed.’ @sharonhodgsonmp.bsky.social There are no appropriate services, none. Disgusting!

Israeli officers 'threaten Gaza flotilla activists with death' during interrogations - https://www.middleeasteye.net/news/gaza-flotilla-activists-receive-death-threats-while-israeli-custody

Hysterical Paralysis to Multiple Sclerosis. Consumption to TB. Melancholia to Depression. Gay-related immune deficiency to AIDS. Names change through medical literature, the results have always been more funding, research and greater scientific and public acceptance #ME not #CFS

“It’s stupid to call it Chronic Fatigue Syndrome. It should be called forever dead syndrome” Keith Jarrett -pianist. 1988 Gary Holmes at the CDC named it CFS as there was no known cause. Multiple studies have shown how that name affects the attitude to the illness. #ME #CFS!

💚to everyone knocking on doors, attending meetings, educating floating voters, challenging untruths, having conversations and fielding attacks from people who find the Green Party a threat to their comfortable status quo.💚

Update on the Crowd Justice page. So important for anyone with #ME or #LongCovid It’s so much clearer. I’m really pleased about that. Would be very good to get a wide range of donors from #ME orgs to non-ME people and 🤞 new patrons with cash to spare. It makes humanitarian & economic sense.

We must stand in solidarity with Jews being attacked by antisemitic criminals and terrorists: no ifs or buts. We must stand in solidarity with Palestinians being murdered by the Israeli government: no ifs or buts. These are not contradictory positions. They are consistent ones. 🧵1/5

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

A powerful article by Dr Nina Muirhead about her experience of having #ME

Psychiatry has caused a lot of delays and damage in the field of #MECFS. A lot of work needs to be done to undo harm from theories such as patients excessively resting, being afraid to exercise, or perpetuating their illness. Dr Nina Muirhead, interview in The Times (2020)

Since Thatcher crushed the unions profits and productivity continued to soar whilst wages collapsed.

👇👇👇👇👇👇

Profoundly good sense.

🎥 NEW INTERVIEW 🎥 "We can't combat climate breakdown without a more effective democracy." @georgemonbiot.bsky.social spoke to Young MVM volunteer Hugo Harvey about how our dysfunctional voting system leads to a toxic political culture and undermines climate action. Watch here 👇

My neighbour Barbara aged 101 saw the programme on Sunday and was absolutely shocked at the number of people suffering from #ME. She knew me even before I became ill but it hadn’t really sunk in. She has most generously sent me a donation to pass on. I’m incredibly moved.