Incidence age is bimodal for myalgic encephalomyelitis/chronic fatigue syndrome, with higher severity burden for early onset disease Open Access @simonmcg.bsky.social, Charles B Hillier , Joshua J Dibble , @tschei.bsky.social, Arild Angelsen , @aryback.bsky.social #ME/CFS #pwME

From Germany Impaired microvascular reactivity in post-COVID-19 syndrome is independent of cardiorespiratory fitness journals.physiology.org/doi/10.1152/... #LongCovid #PASC 1/

Don't try this at home

hijatya Gupta Photographer Wildlife Photographer | Videographer | Storyteller of the wild ॐ The rain and the osprey

1) A research collaboration including Theoharis Theoharides and Nancy Klimas reports dramatically elevated levels of MMP-9, an enzyme that components of the extracellular matrix. They previously reported similar results in Long Covid but I have doubts about their reliability.

IKEA didn't build renewable generation to power 1.47 million homes because politicians told them to. They did it because the economics stacked up. With much of the investment already paid off, savings of over half a billion USD per year on electricity costs, the fundamentals become hard to ignore.

1) There's a new document with care advice for patients with (very) severe ME/CFS. It was published by the Austrian Society for ME/CFS and the Center for Public Health at the Medical University of Vienna.

1) The results of Benjamin Natelsons two-day exercise study have been published. This work was supported by an NIH grant. They tested 58 ME/CFS patients and 25 matched controls but did not find any differences. There was no decline in exercise measures on the second test.

Full segment (9 mins): youtu.be/HHzVXSVvi4o?... New BBC webpage on #MECFS www.bbc.co.uk/articles/c3d...

This is a very moving piece by @swastrosarah.bsky.social, a tribute to her daughter Maeve, clearly an extraordinary, talented young woman who loved life. The love between mother and daughter shines through as well. It did make me smile, and it made me feel a lot of other emotions as well.

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.

An interview with Professor Chris Ponting, a geneticist at the University of Edinburgh, about the recently announced follow-up to DecodeME called Sequence ME & Long Covid. virology.ws/2026/05/31/t...

Great interview. Chris Ponting explain explains how kept sequence ME and long Covid goes beyond DecodeME. The stronger genetic clues it can find will be better at convincing pharmaceutical companies to invest in drug repurposing and drug discovery.

@bettinasemolina.bsky.social @sannara.bsky.social @oleander.bsky.social @infinyti.bsky.social @maosbot.bsky.social @ahandvanish.bsky.social @rosannawregor.bsky.social @osayko.bsky.social Please circulate this wonderful poem by Veronica. Thank you

Powerful poem about the medical mistreatment of ME/CFS patients, published by The Healing Muse. Written by my friend Veronica Ashenhurst, who has severe ME. Read the whole poem here: (@roberthmcmullen.bsky.social) www.s4me.info/threads/publ...

Impact of post-exertional malaise frequency and fatigue in Long COVID patients on health-related quality of life link.springer.com/article/10.1... "Our results suggest while PEM frequency is an important dimension, PEM severity may have a more direct & stable relationship with HRQoL” #LongCovid

Thanks to @biainfection.bsky.social for the kind invitation to present the initial results of the @decodemestudy.bsky.social GWAS. In a quiz, attendees correctly identified PEM as the defining feature of #ME, ☑️ its strong female bias ☑️ and its much higher prevalence cf MS. ☑️ 💪

1) Researchers from the Department of Psychiatry and Psychotherapy in Leipzig highlight that evidence for psychological factors in ME/CFS and Long Covid remains limited and speculative. They warn that psychologising these conditions carries significant risks.

Very interesting that the British Infection Association invited Chris Ponting to present DecodeME results - given that ME/CFS is often a post-infectious illness. And they seemed to know something about this disease; live the quiz that Chris included.

“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.

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've started using AI and I'm finding this a very interesting process. Sometimes AI screws up spectacularly while sounding like it's an expert. Other times, particularly when I know something about the question I'm asking, it feels more like a useful collaboration. What do other people think?

Medscape article www.medscape.com/viewarticle/...

1) 🇪🇸 A new Spanish study measured autoantibodies against adrenergic and muscarinic receptors in 59 patients with ME/CFS, 96 Long Covid and 36 healthy controls. The results show a large overlap, questioning whether these antibodies are involved in ME/CFS pathology.

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...

Channel 4 coverage of the new £4.75M UK government funding for SequenceME. “For decades, many people with ME have been told it is in their heads… But now, a new project will look for the answer in our very DNA, with the world’s first genomic study into ME.” #MECFS

ME/CFS and Long Covid affect millions worldwide, yet have been underfunded for years. It’s great to see the DecodeME project secure new funding to analyse thousands of genomes, helping to uncover genetic drivers and improve diagnosis and treatment. https://bit.ly/3PdjtA4

🧬Join our Sequence ME & Long Covid Webinar Following the announcement of major funding (£4.75 million) from the UK Government, join our webinar to find out more about what this means for the study, and what happens next. 📅 26 May, 14:30-15:30pm GMT 📍 Register here: us02web.zoom.us/webinar/regi...

Simon McGrath (@simonmcg.bsky.social) has written a really good blog on the new government-funded DNA sequencing work for #MECFS. Simon writes excellent, accessible blogs on #MECFS research, and is well worth a follow. I was happy to help out with the video. mecfsresearchreview.me/2026/05/12/d...

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

The science behind this ground-breaking #MEcfs study - congratulation sand thanks to @actionforme.bsky.social @cgatist.bsky.social Andy Devreeux-Cooke @nanoporetech.com and others mecfsresearchreview.me/2026/05/12/d...

DNA sequencing study to help pinpoint biology of ME gets £4.7m The UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really driving the disease. And will probably be…

👉 Read more about the announcement on our website www.actionforme.org.uk/major-fundin...

We are incredibly grateful to the UK government, our project partners, other funders (Schmidt Initiative for Long Covid, the Complex Disorders Alliance (CODA), the Solve ME/CFS Initiative, and WE&ME). Thank you to everyone whose DNA samples, support and lived experience have made this possible

🚨 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

Excellent, a study (in Australia) doing Home visits so that it includes severely affected PwME. Look forward to seeing the results.

I wonder if the current fragmentation in UK politics will lead to parties to adopt proportional representation? Which I think would be a good thing. PR in the past would have had given the UKIP/reform/whatever voice representation - would've been democratic and helpful.

Wonderful to have a proper clinical trial of this, even if the sample size was small. No significant difference on either primary outcome: Chalder fatigue scale and SF 36 physical function. The Pace trial found slightly bigger differences but was unblinded with no proper control group.

I think this Long Covid finding is particularly interesting because it's from the Yale Iwasaki group, and is about to be published in Cell, one of the top journals alongside Nature and Science.

1) 1) Interesting interview of Dr. Audrey Ryback by David Tuller. Her recent study showed that there are likely two age peaks for when people get ME/CFS. It helps to characterise ME/CFS as a unique clinical entity.

It was a delight speaking to @davetuller1.bsky.social about our recent paper lead by @simonmcg.bsky.social with @charliehillier.bsky.social, @tschei.bsky.social, Joshua Dibble and Arild Angelsen. We discuss why this is solid evidence for two age peaks in ME/CFS onset and the biological implications.

I am very touched that Berkeley's crowdfunder for Trial By Error has now received more than 500 donations. If you'd like to support my work exposing bogus research into ME, ME/CFS, Long COVID, etc, here's how: crowdfund.berkeley.edu/project/49720

5) When we discussed the genes that DecodeME highlighted, we said that many pointed to neurons, synapses, and the brain, but that the links to the immune system were still unclear: a lot of potential maybe's. Well, the BTN2A1 results might be that long-sought immune connection.