We've published a blog article summarizing the most interesting presentations at the 2026 Berlin Conference on ME/CFS. 👇 Includes talks on DecodeME, immunoadsorption, low-dose naltrexone, and methylprednisolone.

Update on Savannah: Cyclizine was restored 2 weeks after arriving in Devon, which immediately enabled her to start eating again. After nearly 3 months of “relentless agony and begging”, oxycodone injections were also restored to a level that controls her pain.

What is #MECFS? A brief overview of symptoms, diagnosis and management based on the 2021 NICE guideline. It’s not being tired all the time, patients have an energy impairment that dramatically limits their activity.

youtu.be/ohHdYWngR-g The 2026 trailer is here for Blue Sunday - The Online Concert for M.E. #pwME #MyalgicEncephalomyelitis

“So what you’re really telling us is that everything we’ve been taught in our training as nurses is wrong for this condition.” Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.

Wes Streeting wants GPs to stop writing so many sick notes and send people to the gym. Worth remembering Brynmor John MP had #MECFS and died on Westminster Bridge in 1988 after exercising in the House of Commons gym. He had been advised to exercise his way back to fitness.

“To fight for ourselves is dangerous.” @maggieboxey.bsky.social has #MECFS following a suspected Covid infection. In her TEDx talk, she explains that after speaking to Congress, she spent several days in a crash and that if she’s not careful, it could permanently lower her baseline.

This has been a challenging crowdfunding for Berkeley's Trial by Error project on ME, ME/CFS, Long COVID, etc, but it seems like things are catching up in the final days. Now at 80% of the goal! Thanks to all!!! crowdfund.berkeley.edu/project/49720

Short German TV clip. Kalea, 17, has lived with #MECFS since 2019. Post-exertional malaise means she must carefully ration her energy, even small activities can trigger a drastic deterioration in symptoms, leaving her unable to see anyone, in a dark, quiet room.

Natasha Devon raising concerns about Simon Wessely being involved in the government’s mental health review. Wessely has “already said that he thinks that mental illness is overdiagnosed. So he's not coming from a place of impartiality”. 25 April 2026.

A few news items--"frail & furious" is this year's #MillionsMissing slogan; psych confab hosts usual suspects on Long COVID; LC Activists channel ACT UP!!: virology.ws/2026/05/04/t...

I’ve just donated to @DavidTuller1.bsky.social’s crowdfunding campaign again. I really hope his work investigating #MECFS, #LongCovid can continue. These highlights sum it up… Everything they’ve done for 30 years is not only “bad science” it’s actually been “really harmful” to people.

Short German TV clip. #MECFS cases have doubled since 2020, many linked to #LongCovid. Patients describe lives wiped out overnight, years housebound or bedridden, and having to choose between showering or playing with their child.

“You mourn yourself while still alive. And others move on as if you’ve already died.” Buried Alive with M.E. — a new film by Anil van der Zee (13 mins) Extraordinary work from someone who is so severely affected by #MECFS

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)

1) There's a new review on Long Covid by Mark Faghy and (many familiar) co-authors. I wanted to zoom in on their section on post-exertional malaise (PEM). I'm a bit skeptical, for example, about their statement that 50-80% of Long Covid patients experience PEM.

Jo Platt MP, who lives with #MECFS and #LongCovid, told UK Parliament the COVID-19 Inquiry found Long Covid was repeatedly dismissed despite affecting nearly 2 million people. She asked the Government what steps it will take to act on the Inquiry’s findings, 23 April 2025.

£20,000+ raised for ME research since 2013 is remarkable, Rob. Sequence ME & Long Covid is exactly the kind of research we need right now. I’ve just donated.

1) 🇪🇺 The controversial European project on Long Covid includes a randomized trial on amygdala retraining and online CBT. In a preliminary analysis, both fared no better than usual care.

“She actually asked me a couple of times, you know, am I going to die? She felt so unwell.” Isla is 10 and developed #MECFS after a COVID infection. She is 95% housebound and just wants to “have fun and do things with her friends”. From BBC Lifeline: Action for ME

Hearing the stories of people with #MECFS who took the Decode ME results to their doctors and for the first time were believed is incredibly powerful. Sonya Chowdhury CEO of Action for ME on BBC Lifeline and how they are building on this work to move closer towards treatments.

Great to see @anilvanderzee.bsky.social and his powerful work getting attention in the mainstream press. Wishing him all the best with the exhibition tomorrow. archive.is/2026.04.28-1...

With one week left, the appeal is only at 53% so I have donated for a second time. I am very grateful to David for his work and have no appetite to go back to similar work myself. #MEcfs #PwME #LongCovid

“Having earned my living as an inventor and a thinker, having limits on my thinking is pretty awful.” Mark, a retired technologist, developed #MECFS after catching chickenpox in the mid-80s and gradually became more disabled. From BBC Lifeline: Action for ME

1) A new study estimated the disability and prevalence of Long Covid and compared it to NIH research funding. Long Covid should receive $740 million per year, but it only gets 14%-50% of that amount, depending on how you count. ME/CFS only gets 1% of its proportional funding...

“They’ve grown up with me always being ill and I feel that I’ve let them down because of that.” Andrea has lived with severe #MECFS for 33 years and is confined to bed nearly 24 hours a day. From BBC Lifeline: Action for ME

Olympian Montell Douglas presenting BBC Lifeline for Action for ME “For years, I’ve had chronic pain due to a medical condition and know how difficult it can be to live with. And those with ME also have to deal with social stigma and a lack of support.” #MECFS

1) This review on exercise for Long Covid now has a corrigendum, following a letter by David Tuller that points out multiple flaws.

Brief clip: Whoopi Goldberg raises concerns about #LongCovid on The View. She says one of her employees’ mothers has the condition and can no longer go out to do her job, so now works from home. She also raises concerns about the CDC.

1) Looks like the journal 'Psychosomatic medicine' has changed its name to 'Biopsychosocial Science and Medicine' since 2025. The journal has published a lot of problematic articles on ME/CFS in the past.

BBC Radio Scotland segment on hyperbaric oxygen therapy. Dr Charles Shepherd from the @meassociation.org.uk said we don’t have good research evidence to support its use for #MECFS or #LongCovid, but a lot of patients report they have benefited youtu.be/yx8l7p9qRnk?...

1) Trigger warning: suicide This paper analyzed 505 entries on the National CFIDS Foundation memorial list. These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes.

Excellent piece in New Scientist on exercise research in #LongCovid and #MECFS. Highlights studies ignoring post-exertional malaise, the PACE trial, and comments from David Tuller, Tom Kindlon and Todd Davenport. Full article: archive.is/2026.04.22-1...

As George Monbiot says in this clip @davetuller1.bsky.social’s work was “absolutely crucial” in helping him understand the problems with #MEcfs research when writing his seminal article. I’ve just donated to David’s crowdfunding campaign to help keep his work going.

Emma Shorter was told people who don’t recover from behavioral treatment for #MECFS have made the illness their personality. She was told not to meet other patients and to trust the therapist over her own body. She went from walking 4 mins a day to needing a wheelchair.

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018 “It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

1) Re-reading some ME/CFS history: in the late 1990s the CDC diverted millions of dollars budgeted for ME/CFS into work on other diseases. The CDC presented misleading data to Congress, a whistleblower was needed to uncover the misuse of funds.

Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.

Helen Gibson and Edward Monroe on BBC Radio 4’s Feedback challenge Suzanne O’Sullivan’s claims that #LongCovid is largely psychosomatic when she was interviewed on Amol Rajan’s podcast. Mentions #MECFS, NICE’s 2021 guidance and DecodeME genetic findings.

Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.

Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”. “We’ve had letters from GPs saying we have changed their minds” Clip from Hope 4 ME & Fibro NI Collaboration

Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS “This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”. Clip from Hope 4 ME & Fibro NI 2026

Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder. Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026

#MECFS patients and advocates not only had to fight flawed research and harmful treatments, they also had to deal with attempts to discredit them, like a PACE author calling an MP “unbecoming” and accusing MPs of defamation and libellous comments for scrutinising his work.

Reading the new OECD report on Long COVID as a clinician is a sobering experience. www.oecd.org/content/dam/...

New research: first comprehensive estimate of the economic burden of long Covid across EU and OECD countries. Long Covid is projected to cost OECD economies up to $135bn a year and the damage is expected to last at least a decade. archive.ph/2026.04.08-0...

I’ve written a short thread responding to Suzanne O’Sullivan’s claim that criticism of her books largely comes from “10 people on social media” highlighting responses from UK ME charities. twitter-thread.com/t/2041098446...

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…”

Suzanne O’Sullivan was on the BBC Amol Rajan podcast saying #LongCOVID is psychosomatic for a large proportion of patients. I’ve written a response highlighting a number of problems with this claim on X, which can be viewed via this webpage: twitter-thread.com/t/2040085001...

Clip from German public broadcaster ZDF’s science programme MAITHINK X – Die Show discussing claims made by the Gupta Programme, a brain-retraining approach for ME/CFS.