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.

1) 🇬🇧 In the UK, the delivery plan for ME/CFS has finally been published. Here's what it says about scientific research on ME/CFS...

UK government press release: "Boost in support for patients with chronic fatigue syndrome or ME: Better care for patients living with #MECFS, with plans to invest in research & offer [care] closer to home" www.gov.uk/government/n... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME

TW: New Sunday Times investigation hundreds of parents, falsely accused of Fabricated or Induced Illness when seeking care for their children - abuse allegations, risk losing access, and waiting months to be cleared— some children worsened and even died. archive.ph/2025.07.19-1...

This article reflects many of my feelings about The Salt Path following revelations about the author’s dishonesty.

June 30 + 8… still no Delivery Plan on ME. Grateful to helenmorganlibdem.bsky.social, LibDem Health Spokesperson for writing to rthonwesstreeting.bsky.social asking that the Plan be published very shortly. We want people with ME, and their carers, to know that the LibDems are on their side.

NEW: Liz Kendall has told MPs that if a disabled person currently on PIP requests a reassessment after November 2026 because of worsening health, they will be assessed on the new tougher criteria. This confirms The Guardian’s report that those with fluctuating conditions will not be protected.

“Over the years narratives are constructed and take root. And when someone comes along with a counter-narrative they are ignored. It would be unkind to call it groupthink but there is, at the very least, a lack of balance.” This could have been written about BBC coverage of ME/CFS.

📢 Now published: www.embopress.org/doi/full/10..... Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences. bsky.app/profile/cgat...

Excluding Royals, there are currently 47 Knights Grand Cross of the British Empire but no Dames Grand Cross. It it somehow fitting that someone who has been so persistently wrong about an illness which is so much more prevalent in women should be awarded an honour that is so seldom given to women.

The UK ME/CFS Biobank are still offering free ME/CFS samples, covering a range of patient groups for comparative research including mild, moderate and severe ME/CFS. You can apply for free samples until the 31 July: http://bit.ly/MECFS-samples #MECFS #pwME #Research #BioBank

1/ At first I thought this fledgling might be dead but when I started stroking her I could see that she was moving. I was going to put her in a shoe box and ask @rspb.bsky.social what I should do…

1) One of the studies that noted 'something in the blood' of ME/CFS patients has now been replicated with a large sample size. Unfortunately, no effect was found.

Edwards et al give short shrift to rehabilitation programs for people with ME/CFS which encourage physical exertion: “It is now clear that this approach not only has no valid theoretical basis but produces no useful benefit and often leaves patients more unwell.”

This much anticipated hypothesis paper on the mechanism of ME/CFS has now been published: www.qeios.com/read/8GI3CT The preprint is being discussing with lead author Prof Jonathan Edwards on S4ME: www.s4me.info/threads/a-pr... “A little more T cells …”

Jonathan Edwards has announced that he has written a hypothesis paper on "A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma" with Jo Cambridge and Jackie Cliff. The preprint should appear on Qeios later today or on Monday: www.s4me.info/threads/a-pr...

1/2 ** TW: Upsetting Content ** The Press Awards 2025: Senior Writer at The Times, Sean O'Neill wins Campaign of the Year for his coverage of ME/CFS and the sad death of his daughter Maeve Boothby-O'Neill. The judges praised “a compassionate and powerful piece of public service journalism”.

Jonathan Edwards has announced that he has written a hypothesis paper on "A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma" with Jo Cambridge and Jackie Cliff. The preprint should appear on Qeios later today or on Monday: www.s4me.info/threads/a-pr...

We will share and discuss the latest ME/CFS & Long COVID genetic findings in a free webinar on 6 June, hosted by @actionforme.bsky.social. Speakers include Steve Gardner, Audrey Ryback, and Sonya Chowdhury. 🎟️ Register: precisionlife.com/webinar-upda... #MECFS #LongCOVID #precisionmedicine