Interested in ME/CFS research? Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social? Then apply for a *funded* Future Medicine PhD Fellowship. See: www.findaphd.com/phds/project... Please contact us to discuss before applying.

Refreshingly progressive letter in today’s Times: www.thetimes.com/comment/lett...

New Trial By Error Interview--with Irish psychologist Brian Hughes @bmhughes.bsky.social -- Links: crowdfund.berkeley.edu/project/47768 & www.youtube.com/watch?v=0K75... Screenshot is latest update David Tuller @davetuller1.bsky.social has sent out by email to previous donors. #MEcfs #LongCovid

"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...

Want to join our amazing team for a PhD in ME/CFS research as part of a funded Future Medicine PhD Fellowship? See: www.findaphd.com/phds/project... We offer: Exciting and rigorous science, PPI, truly interdisciplinary and fantastic research culture! Please contact us to discuss before applying!

🧵 Thanks very much to my good friend, Orla Ní Chomhraí, for bravely giving a 6-minute talk about my #MECFS story & work to a crowd of 470 people at the Belvedere College (past pupils’) Union dinner on Friday where I was presented with the Social Justice award. #PwME @irishmecfsassoc.bsky.social 1/

“Grief sits heavily indeed when it must be stared full in the face, day after day. But joy, conversely, soars high in a life stripped bare. How intense is the beauty of the sky or a spring flower when days are bleak.” Another beautifully written blog by @naomiwhitt.bsky.social

@georgemonbiot.bsky.social I’m sure you will be delighted to learn that Dame Clare Gerada, Lady Wessley, has been appointed to the House of Lords. Judging by the responses to the congratulatory RCGP post on X she appears to be nearly as unpopular with drs as she is with ME/CFS patients.

For the first time, Berkeley's Trial By Error crowdfunding campaign has reached 50% of the goal right at the 15-day half-way point. Most times, it's at about a third at this point. If you'd like to donate, here's the link: crowdfund.berkeley.edu/project/47768

Poignant sequel to Rilke’s poem The Panther by Veronica Ashenhurst who has severe ME/CFS: www.westtrestlereview.com/wtr_septembe...

1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.

1) Another interesting interview of Prof Chris Ponting by David Tuller. They talked about PRIME, a new 4-year project that will provide an infrastructure to accelerate ME/CFS research. It received 0.8 million in funding from the Medical Research Council (MRC).

Our 2025 Big Survey is now open! 🎉 For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/ Thank you for supporting our research💙 🤝in collaboration with @durhamimh.bsky.social @kacheston.bsky.social

A rare October wheelchair outing yesterday. Wakehust was magical in the autumn sunshine.

The research used to claim reliability of a ME/CFS blood test has important limitations, shown here. www.theguardian.com/society/2025...

7) Here’s the link to our article:

1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.

The big issue of the day: fewer or less than half of children? www.thetimes.com/comment/colu... @susiedent.com please can you adjudicate?

ME Research UK and the ME Association are excited to announce funding to Dr Fatima Labeed and Dr Jackie Cliff to develop a diagnostic test for ME/CFS, expanding on their initial study showing electrical differences in blood cells from people with ME/CFS.  https://meassociation.org.uk/wohx #MECFS

In 2023 I unsuccessful nominated Tom for an honorary degree at Trinity College Dublin with the support of numerous scientists, organisations and others. (Details here: www.s4me.info/threads/tom-...) Delighted that Tom has now been honoured by the Belvedere Union. Hugely well-deserved 💪 🥳

Prof Chris Ponting, lead author of DecodeME: “It is clear that ME is not a research priority for this UK government ... We have to asked the question of them: Why is ME not a priority when all these other diseases have been and are?“ Why is that @rthonwesstreeting.bsky.social?

Prof Chris Ponting, lead author of DecodeME: “It is clear that ME is not a research priority for this UK government ... We have to asked the question of them: Why is ME not a priority when all these other diseases have been and are?“ Why is that @rthonwesstreeting.bsky.social?

Sometimes the historical dictionary offers solace through the existence of an obsolete word that is sorely needed now. One of them is ‘respair’, recorded just once, in the 15th century. It means fresh hope, and a recovery from despair.

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM

My letter in The Times about #DecodeME and the need for the government, institutions and individuals to acknowledge their mistakes, apologise, and act to ensure that research is sharply increased and patients are given access to appropriate services: www.thetimes.com/comment/lett...

My letter in The Times about #DecodeME and the need for the government, institutions and individuals to acknowledge their mistakes, apologise, and act to ensure that research is sharply increased and patients are given access to appropriate services: www.thetimes.com/comment/lett...

This powerful poem, Art Therapy, might resonate on #SevereMEDAy. It's by my friend and published poet Veronica Ashenhurst, who grows ever more severe. #Gaslighting Read the whole poem at acropolisjournaluk.wixsite.com/acropolisjou... @tomkindlon.bsky.social @strangerandstranger.net

If you'd like to support the researchers behind #DecodeME with other projects eg #SequenceME www.clinicalresearchnewsonline.com/cln/pressrel..., here's donation link www.decodeme.org.uk/support-us/ Alternatively donate directly to Prof Ponting's #MECFS research donate.ed.ac.uk/support/ME-C... #CFS

Strange that #DecodeME was on the front page of the Guardian today and was reported in all the major UK newspapers but it hasn’t yet been mentioned on BBC News: www.theguardian.com/society/2025...

1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome. The Manhattan plot below shows the genes and chromosomes involved. Let’s unpack the results 🧵

I’m hugely grateful to @tessamunt.bsky.social for her advocacy. However, she gets some of the science wrong. The genes that have been identified are not unique to people with ME/CFS – they are just more or less common in healthy people. See: www.decodeme.org.uk/x-marks-the-...

BBC Radio 4’s Today reports on the results of the DecodeME study. Professor Chris Ponting says the largest genetic study of MECFS reveals eight DNA regions linked to the disease. 19-year-old Lucy describes years of not being believed. youtu.be/O4wLpiRXKKs?...

DecodeME results are out! So inspired by my incredible colleagues at UoE who have carried out this research to the highest standard. I hope these results will bring about a paradigm shift in ME/CFS research and attract more interest and investment to the field. shorturl.at/VwN3s #DecodeME

“We urgently need more research, more researchers coming into the field, [and] more research funding to build on what we’ve found.” Sonya Chowdhury, @actionforme.bsky.social CEO, talking about DecodeME: www.science.org/content/arti...

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️ theconversation.com/ignored-blam...

“I’m actually quite angry that this [genetic analysis] was not done 15 years ago, just like for every other major disease.” @cgatist.bsky.social talking about DecodeME: www.thetimes.com/uk/healthcar... Without paywall: archive.ph/BSpnr

Clip: Channel 4 News presenter Krishnan Guru-Murthy introduces new DecodeME findings, the largest genetic study of #MECFS ever undertaken.

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

1) Today's a special day as the ME/CFS community is looking forward to the release of the DecodeME results at 7 PM (British Summer Time). Here are some thoughts about what we might expect.

The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx). We're letting you know the timing in advance so you can pace beforehand. Thank you to our participants & supporters.

1. “The status Cochrane has given this review [on exercise therapy for ME/CFS] encourages the perception that it yielded to vested interests rather than staying true to its mission of providing reliable evidence and health information” @hildabast.bsky.social absolutelymaybe.plos.org/2025/07/31/s...

Six months later: What their response on ME/CFS tells us about the Cochrane Collaboration. New post at Absolutely Maybe .... 1/2 absolutelymaybe.plos.org/2025/07/31/s... #MECFS

1) This factsheet is one of the best resources for explaining what post-exertional malaise (PEM) is. The vague name ‘malaise’ isn’t very clear.

Learned earlier this evening that the #MECFS Collaborative Research Center at Columbia's funding was restored... it's a huge relief to know that their work will move forward. Congrats to the whole lab! 🧪 #NEISvoid

“while in many ways this was as expected, it was still a bleak experience watching our low expectations play out in reality” @thereforme.bsky.social response to the DHSC Delivery Plan for ME/CFS: www.thereforme.uk/p/campaign-u...

“Through a series of Freedom of Information requests, we have obtained the training materials used by the Department for Work and Pensions (DWP) to train healthcare professionals who conduct Work Capability Assessments for M.E./C.F.S.” www.stripylightbulb.com/2025/07/21/c...

My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that: www.bmj.com/content/389/... #MECFS

We’re excited to announce PRIME- a new research project starting in October which will create infrastructure for ME research in the UK.