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...

Britain has a tax on instruments that don’t exist any more. It raises no revenue. It never applies. It was meant to be abolished this year, but wasn't. It still exists. Anyway, I made a chart of all 85 UK taxes.

New report: Long COVID and ME/CFS cost Germany €64.4 billion in 2025 alone – 1.44% of GDP. Over 1.4 million people are currently living with one of these conditions. Total cumulative cost 2020–2025: €318.8 billion. 📊 #MECFS #LongCOVID 🔗 https://t.ly/QeMez

Thinking of the #ME community this #BlueSunday, especially those who are struggling to participate or for whom it brings painful memories. You are not forgotten.

youtu.be/6iRbQNX07zY Please watch & share this fabulous online music concert organised by Isaac Greer for Blue Sunday to help raise awareness & funds for the #MyalgicEncephalomyelitis #ME/CFS research @edinburgh-uni.bsky.social led by @cgatist.bsky.social Prof Chris Ponting youtu.be/6iRbQNX07zY

Amazing musical performances and messages from Prof Chris Ponting @cgatist.bsky.social and @tessamunt.bsky.social All donations to the ME/CFS research at the University of Edinburgh.. www.justgiving.com/page/i4bsc26

1. Training of #hcps People with #ME/CFS and #longcovid I need your thoughts and ideas please. I would like to develop simulation training for all #hcps. We now use a lot of simulation which means that we can simulate severe #ME and #longcovid in a hospital setting.

It took 7 years but we have managed to publish an article in the physiotherapy frontline magazine "Do no harm". Thank you to the @thecsp for publishing. Over 65,000 UK physios will see this important message about #pwme @physiosforme.bsky.social

Join our board of trustees as Treasurer! We are seeking a qualified finance professional to join our board as Treasurer, overseeing our finances and maintaining a strategic approach to reporting, budgeting, target-setting and more. This is a great chance to join a small, energetic charity. 1/

It never ceases to amaze me how many election pundits don’t understand the dynamics of First Past the Post, and how vote-splitting works under the UK’s electoral system. John Curtice does. Listen to John Curtice.

Human brain matters: Navigating the Neuropathology of COVID-19 The aim of this narrative review is to summarize neuropathological features described in postmortem human COVID-19 brains (n = 352). Furthermore, analysis of biofluids and neuroimaging from PASC patients underline long-term changes in

“As the UK Government implements its 10-year plan for the NHS, effective health data infrastructure will be essential to improve outcomes, reduce inequalities, and enhance NHS efficiency.”

eClinicalMedicine, a Lancet journal, has now also published the authors' response. They agree that they were "overly assertive" in promoting exercise--but did not correct the language in their revisions. virology.ws/2026/04/26/t...

👌Bravo Bravo Non-violent action at European Long Covid Conference with a Psychologisation agenda "We are sick, we are disabled, and we are dying because of charlatans like you." Paul Garner spotted Full translation below 👇 🧵 1/

Are you a GP who needs to update your knowledge? 👇

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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

BBC Radio 4 Feedback full segment. Listeners share their concerns about Dr Suzanne O’Sullivan’s claim that #LongCOVID is psychosomatic. Includes an interview with @NickyProctor (11 mins) youtu.be/Du4devaRH5w?...

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.

👏Excellent commentary to @BBCR4Feedback by Helen Gibson, @tedmonroe91.bsky.social & @nickyproctor.bsky.social 🧪 It also shows the power of @DecodeMEstudy in refuting stigmatising, outdated & false views of people like O'Sullivan.

Letter in Times today

🚨What is the problem with just testing PEM with the screening questionnaire DSQ-PEM and then stratify accordingly? A screening questionnaire is not a diagnostic tool. Using DSQ-PEM alone is insufficient because: It includes a large proportion of false positives! ⚠️ Why? 1/n

It’s estimated that 10% of women worldwide are affected by endometriosis.

WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY? YOUR WEEK? YOUR YEAR? #ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone. Practice self care & protect your community. Wear a mask This & more ko-fi.com/saltydyke/shop

These gendered inequalities don’t exist in isolation. They intersect with inequalities related to class, race, disability, sexual orientation and gender identity, creating even greater barriers to access, treatment and outcomes for many groups of women. Read more 👇 www.wbg.org.uk/article/unde...

I thought I’d go and see my Mam today, with it being Mother’s Day. She’s 88 and has advanced dementia, she won’t know if I go or not - but I do. I can’t, because of an #ME flare that’s kept me in bed. Love to others in sim situation. 🥰 to all.

Today is #LongCovidAwarenessDay and--once again for the cheap seats--ANYONE who's had Covid, particularly folks who've had it more than once, can develop #LongCovid. It's an insidious post-infectious illness like #MyalgicEncephalomyelitis. So far, no treatment or cure www.longcovidawareness.life

It’s Ovarian Cancer Awareness Month, everyone. There’s no routine screening for ovarian cancer, and it isn’t picked up by other gynaecological screening (such as smear tests). But if you do think it might be a possibility, you can ask your GP for a blood test and/or a scan.

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.

@ashleydaltonmp.bsky.social @tessamunt.bsky.social pls take this seriously. I'm begging you. QEH's approach is UNSAFE for pwME. I am sure it would be fine for someone who isn't in rolling PEM - but that's not the case and it will kill her. 9 weeks without eating now, in agony and gastric shutdown.

#SaveSavannah #SevereMErgency #pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy

@cabruce.bsky.social @katybrc.bsky.social @actionforme.bsky.social @meresearchuk.bsky.social @meactnet.bsky.social @malnutritionme.bsky.social #ME

@ashleydaltonmp.bsky.social Your words “these must become never events” PLEASE INTERVENE TO SAVE LIFE Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS www.meresearch.org.uk/claims-of-nh...

Clip from German TV - 19-year-old Martha developed ME/CFS following COVID (English subs) Mostly confined to her sofa, carefully pacing her energy to avoid crashes. No school. No social life. No approved treatment. #LongCovid

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):

Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026. The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below! 1/9 #MECFS #pwME #OpenCall #OnlineExhibition

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 🧵 1/n

We want to hear from women with long term health conditions to understand what is working or not in diagnosis and treatment/care. Please share your experience through our anonymous survey: www.smartsurvey.co.uk/s/77KRR3/ Or you can email: [email protected] or call 01904 621133.

We’ve created At Our Pace to support young people with Long Covid and overlapping illnesses to share their lived experiences and to build a growing set of resources shaped by those voices. Flexible, supportive, and youth-led. #Blog: www.longcovidkids.org/post/at-our-... #AtOurPace

Today we’re launching #ForThoseWhoCant, our new fundraising campaign. It’s about making fundraising more accessible, with ideas and guidance for friends, family, and loved ones who want to support our work. Email [email protected] or click here for more: www.longcovid.org/get-involved...

📢 Have your say in the conversation about the SEND reform! Ahead of the publication of the Schools White Paper this year, the Dept for Education is hosting a series of SEND engagement events across the country. These events are for parents & carers, alongside teachers & other education experts.

Come and join us at Imperial College to work a project looking at mechanisms in Long Covid and ME/CFS We're looking for: A keen, experienced Research Nurse A gifted molecular immunologist with a strong bioinformatics background www.imperial.ac.uk/.../descript.... www.imperial.ac.uk/.../descript....

In her first article (part II will follow) Natalie Hilliard shares insights from physiotherapy that will be of particular use to therapists and counsellors. This includes an understanding of post-exertional malaise, the challenges of trying to pace properly, and the impact of

LOCOME Research Project webinar on 5th December - a recording is now available www.youtube.com/watch?v=ITZ3... Screenshot from latest Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves. Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol tandfonline.com/doi/full/10.... #MEcfs #CFS

⏰ 24 hours left! Together, you’ve helped raise over £135,000 to improve the lives of people with ME and accelerate vital research. Although our match funds have now run out, every single donation still counts. ✨ Donate here: bit.ly/2025-big-give  Thank you so much 🧡

@iansample.bsky.social @madifinlay.bsky.social Follow up episode? 😊 This study builds on the DecodeME study that you covered in the summer on your Guardisn Science Weekly podcast #ME #LongCovid #LOCOME @actionforme.bsky.social @decodemestudy.bsky.social

(1/4) 🧬 @precisionlife.bsky.social has released exciting results from the LOCOME project Using DecodeME and other datasets, LOCOME has identified a number of genetic signals and biological pathways that may be involved in ME.

Our #ThereForME Advent Calendar wonderful people who have been #ThereForME starts tomorrow! To start us off, we'd like to share this reflection kindly written for us by Jenny Wilson, who many know as a fierce advocate for the community working closely with Dr Weir.