For my birthday on 3 May I’m raising money for Sequence ME & Long Covid via @actionforme.bsky.social: www.justgiving.com/page/robafme
All donations gratefully received, however small or large. Thanks.
Poster showing a video camera on a tripod with text “BBC Lifeline Appeal – Airing Sunday 26 April.” The Action for ME logo appears in the top right, and a Lifeline logo with two reaching hands is at the bottom.
1/6
🚨 ME on the BBC
We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding of ME and share the voices of the ME community across national TV!
#pwME
⬇️
Well, it's now up to 27% of the goal, with 186 donations. So, it's moving along a bit. Thanks to all!!--https://crowdfund.berkeley.edu/project/49720
Blog about the recent study finding evidence across Europe for ME/CFS peaking at two different ages, a v unusual feature. The peak ages of 1about 6 and late 30s is a unique combo even among diseases with two, and could be a clue to the biology of ME/CFS.
mecfsresearchreview.me/2026/04/15/m...
“Ministers justify cutting help for people too disabled to work by arguing it will remove the “perverse incentives” for benefits, as if a 25 year old bedbound with ME just needs incentivising to get back to the office.”
My col. on next week’s Universal Credit cut www.theguardian.com/commentisfre...
“Ministers justified reducing support for people too disabled or ill to work by arguing it would remove the “perverse incentives” that discourage employment… as if a twentysomething bedbound with ME just needs “incentivising” to get back to the building site”
www.theguardian.com/commentisfre...
1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years.
A longread with separate chapters on:
- viral persistence
- cytokines
- neuroinflammation
- antibodies
- immune cells such as NK, B, and T cells
Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes.
academic.oup.com/ooim/advance...
1/
team credits to follow
Great quote from Spock in Star Trek:
“Most illogical reaction. We demonstrated our superior weapons. They should have fled.”
My #MECFS scandal explainer video has just passed 200,000 views.
Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since.
medium.com/@abrokenbatt...
Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.
Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.
Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th...
All welcome to comment and make suggestions before the document before it is finalised.
Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th...
All welcome to comment and make suggestions before the document before it is finalised.
When @davetuller1.bsky.social asked Professor Jonathan Edwards if he could explain the BACME dysregulation model of ME/CFS.
Full interview: youtu.be/jklUXc1XCYI
Open letter to BACME:
www.s4me.info/threads/an-o...
Great to see this. Should be interesting.
BBC Radio 4
Tuesday February 24th at 9.30am
Inside Health:
“Is the tide turning on ME research”? (28 minutes)
www.bbc.co.uk/programmes/m...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The British Association of Clinicians in ME/CFS issued a "therapy guide" last year. Very unsatisfactory. Professor Jonathan Edwards and colleagues have responded in an open letter. I spoke with Professor Edwards about it. virology.ws/2026/02/20/t...
The UK Dementia Research Institute is part of an international group looking for these proteins. Interestingly, the £1m study looking for ME/CFS blood biomarkers is based at the same institute, presumably using similar technologies meassociation.org.uk/2026/02/new-...
www.bbc.co.uk/news/article...
You can donate to the Sequence ME & Long Covid study here:
www.actionforme.org.uk/research-cam...
“Donations will be managed by Action for ME, and restricted to funding the Sequence ME & Long Covid study”
“Action for ME, the Schmidt Initiative for Long COVID, and the Complex Disorders Alliance (CODA) announce the launch of Sequence ME & Long Covid – the world’s largest long-read, whole-genome study of any disease.”
Great news but also frustrating that there is no MRC or NIHR funding.
Image of a DNA double helix against a soft blue background with light particles. The Action for ME logo appears in the top right corner. Text on the image reads: “Research News – SequenceME and Long Covid study launches. The world’s largest long-read, whole-genome study of any disease.”
Quote from Action for ME CEO Sonya Chowdhury.
Quote from Complex Disorders Alliance CEO Amy Rochlin.
Quote from Schmidt Iniative for Long Covid CEO Dr John Redd
Today we’re delighted to launch Sequence ME & Long Covid - the world’s largest long-read, whole-genome study of any disease 🔬
🧬 This £20 million ground breaking initiative will explore the root causes of ME and Long Covid, with the aim of accelerating progress towards diagnostics and treatments.
Gove? 😱
Summary The document represents a failure to move forward to an evidence-based approach to an illness that is recognised as being long term for many people and, at present, of unknown mechanism. It appears to serve interests of BACME members rather than patients and from our perspective involves a deception that can only perpetuate the lack of trust ME/CFS patients have in the healthcare system. Until now policy has been unclear. This document makes it plain that nothing with any evidence base is on offer and that there is no justification for continuing to commission services based on the proposed model. With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths. The lack of a specialist medical 'home' with a research base has halted progress in knowledge and care in ME/CFS. This neglect cannot continue to be tolerated. Continuing current provision without medical leadership will not result in improved outcomes for patients. Filling the vacuum with well-intentioned, but ineffective 'therapies' is a poor use of resources and therapists’ time.
An Open Letter to British Association for Clinicians in ME/CFS (BACME) in Response to the Document ‘Guide to Therapy’, 2025.
www.s4me.info/threads/an-o...
Letter authors:
Jonathan Edwards (professor of connective tissue)
Michelle Bull (physiotherapist)
Joan Crawford (psychologist):
A perfect storm given the apparent indifference to upholding basis scientific standards in psychology, as illustrated by the flawed and arguably fraudulent research which has perpetuated the mistreatment of people with ME/CFS.
🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum.
2 - 8 Feb 2026
Recording of the PRIME workshop webinar on how AI and other quantitative methodologies have been applied to ME/CFS and Long Covid research – and how they could be used to discover molecular or genetic biomarkers: youtu.be/1sVbGePNpgM?...
Reading about Diane’s experience reminded me of the text from an anonymous individual “associated with the Royal College of Psychiatrists” who tried to persuade the NICE CEO to tamper with the Evidence Review for the 2021 NICE Guideline for ME/CFS: domsalisbury.github.io/mecfs/nice-m...
Agree with a lot of the analysis but I don’t understand why he considers Starmer to be “a mostly unserious prime minister”.
On a different thread Prof Jonathan Edwards writes: “We have been a bit deadpan about Liz Worthey's project but there might be something really important in there. I would like to see more discussion on that.”
www.s4me.info/threads/rati...
This paper is being discussed with Liz Worthey on the S4ME forum here: www.s4me.info/threads/unco...
People who consider themselves decent, progressive, or left leaning should not only be embarrassed to remain on X in any active capacity - they should be deeply ashamed. The line was crossed long ago.
