Peter White
@mediumwhite.bsky.social
Europhile 🏳️🌈, lived in 🇬🇧🇮🇹🇨🇼🇧🇪 🇧🇩. Dedicated follower of science. Former textile engineer, now a Mgmt consultant. I believe in believing people.
This is why we shouldn’t build any more roads. A train would have been a fraction of the cost and far, far less damaging to the environment.
The Guardian@theguardian.com · 4w agoUK’s public spending watchdog to investigate Lower Thames Crossing project
Beyond thrilled to hear this news about @daltmann.bsky.social and team receiving serious @meassociation.org.uk funding for an immunology project. Prof Altman has already been a great advocate, and I am thrilled this will enable him to keep working in the field. 👏👏👏👏👏
ME Association@meassociation.org.uk · 8mo agoImperial College London: £1.1m awarded to investigate links between ME/CFS and Long Covid "A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid." https://tinyurl.com/mr3ybhwv #MECFSResearch #MECFS #pwME #LongCovid
Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...
PRIME Project Manager
The PRIME project is looking for an experienced and dedicated project manager. This role will be crucial to the successful delivery of PRIME, with the post holder responsible for the strategic executi...
elxw.fa.em3.oraclecloud.com
After 3 years photographing 50 people with #MECFS, I’ve learnt more than in the 40+ years since my own diagnosis. #LivesWeCannotLive #PwME
I haven’t been able to write over the last few days, but what an amazing result! Not much to say other than colossal thank you to @cgatist.bsky.social @actionforme.bsky.social and the full @decodemestudy.bsky.social team. The gratitude that so many #pwME feel cannot be expressed in words.
DecodeME@decodemestudy.bsky.social · 12mo agoOur 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
DECODE ME has published its results. Massive congratulations to @cgatist.bsky.social and team in Edinburgh. Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness. www.decodeme.org.uk/initial-dna-...
Initial DecodeME DNA Results - DecodeME
06 August 2025 The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share. Main findings from our analysis Your genes ...
decodeme.org.uk
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
Six Months Later: What Their Response on ME/CFS Tells Us About the Cochrane Collaboration - Absolutely Maybe
Six months ago, I wrote a post called “When journal, scientific society, and community values clash.” I recounted the tale of the…
absolutelymaybe.plos.org
Great video by @davetuller1.bsky.social on the Sjoerd Beentjes & @cgatist.bsky.social study into molecular signals in the blood of people with ME/CFS, showing that these are not explicable due to inactivity. Really useful to have a lay person explanation. Thank you! youtu.be/JYHVnKEdHig?...
Interview with lead author of new ME/CFS "blood-based biomarker" study from University of Edinburgh
YouTube video by David M Tuller
youtu.be
If we want change, we need to fundraise for it. Around half of medical research is funded through the charity sector. Many people won't be able to donate, but for those who can, I cannot think of a more deserving cause than driving change for people with ME.
Action for ME@actionforme.bsky.social · last yr.1/2 Another Summer Appeal video in 📹 @mediumwhite.bsky.social has long-campaigned for people with ME, calling for an urgent increase in medical research funding. Thank you, Peter, for sharing and supporting our Appeal 🌻 ⬇️
📢 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...
Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity | EMBO Molecular Medicine
imageimageThere are no cellular or molecular biomarkers diagnostic of myalgic encephalomyelitis (also known as chronic fatigue syndrome [ME/CFS]). We find hundreds of blood-based traits are different,...
embopress.org
Chris Ponting@cgatist.bsky.social · 2y ago116 blood traits are significantly different – on average – between people with #MEcfs and healthy controls, *both* in females, and in males. This keeps alive the future ambition of a blood-based biomarker panel for accurate #MEcfs diagnosis www.medrxiv.org/content/10.1...
Excellent presentation made by Dr @binitakane.bsky.social to the APPGs on ME and #LongCovid. We are fortunate to have a Doctor who understands the problems, sees the need for change and can communicate so well. Also some strong new thinking for #pwME. (1 of 4 short vids)
Great presentation made by Prof Chris Ponting (@cgatist.bsky.social) to the UK APPGs on ME & Long Covid about the ongoing failure to fund research into ME. UKRI is failing #pwME and #LongCovid Time for Wes Streeting to step in: @tessamunt.bsky.social Please share. Pt2 in next post.
It’s funny how money can leave your account on a bank holiday, but can never go in. Like a reverse Hotel California.
#LondonMarathon2025 Can you help Seamus hit his target 🎯 and help LCK continue our mission to support children & young people living with Long Covid & related conditions? Tomorrow is the big day!! 🏃♂️ www.justgiving.com/page/seamus-... #Run #runnerspace #runningmotivation #fundraiser
Long Covid Kids@longcovidkids.bsky.social · last yr.Four amazing individuals are lacing up their shoes to run marathons and raise funds for LCK this Sunday! We have 2 💥 people in the #LondonMarathon 1st we have Seamus who is running for us using our charity spot! www.justgiving.com/page/seamus-...
@daltmann.bsky.social This is a study in Science TM showing persistence of elements from cell walls in mouse livers, and appears to suggest it could underpin chronic symptoms… Does this look as significant a discovery for post-infectious diseases as it seems? www.science.org/doi/10.1126/...
The peptidoglycan of Borrelia burgdorferi can persist in discrete tissues and cause systemic responses consistent with chronic illness
Polymeric Borrelia burgdorferi peptidoglycan cell wall can persist in murine livers for weeks to months after direct injection or infection.
science.org
#LongCovid, #MECFS and #PAIS are medical and ethical emergencies. Though many people fail to recognise this as such. On the ethical issues, our website with the video recordings of the talks held at the #postviralethics conference is now online!! 👇 www.ru.nl/en/about-us/...
Postviral Ethics - RCPS & PCNN | Radboud University
Read the workshop report and check out the presentations.
ru.nl
The vast taxes that Donald Trump is imposing on world trade are likely to be devastating to us all. This at a time when economies are already precarious due to Covid. I know many people who are having a hard time at the moment. I fear things could get much, much worse.
This is what I see. What happens to people who are too disabled and sick to work, or even get out of bed, but have no financial safety net? You know the answer to that, you just don’t want to acknowledge it.
Stephen MIA@stephenmia.bsky.social · last yr.So I won’t qualify for PIP with these new rules despite being bedbound. What do I do now, there’s no way I can work at all. What will happen to me?
It's Long Covid Awareness Day. I know ~10 people (still) suffering from life-altering Long Covid. The only 'special' thing about me? I've been public about my own illness, so I hear stories others don't. Long Covid is widespread, devastating, and deserves everyone's attention
Is this what the next 4 years are going to be? Endless u-turns and change on policy. This is absurd.
The Guardian@theguardian.com · last yr.Trump says he is suspending tariffs on many Mexican goods for one month – US politics live
Voici un documentaire de 2021 disponible sur Arte TV visible jusqu'au 18 mars 2025 sur la maladie peu connue dont je vous parle et dont je suis atteinte : l'Encéphalomyelite Myalgique. Arte diffuse depuis cette semaine un 2eme doc sur l' #EMSFC : en prochain post. www.arte.tv/fr/videos/09...
Le syndrome de fatigue chronique - L’EM/SFC, une maladie trop peu (re)connue - Regarder le documentaire complet | ARTE
Des millions de personnes souffrent d'encéphalomyélite myalgique (EM) : un épuisement extrême et persistant, pour lequel il n'existe aucun remède. Enquête.
arte.tv
For those who were aware of the @meassociation.bsky.social saga pre-Christmas… ME-Association trustees are AGAIN threatening to get legal towards people who question payments the ME Assn made to its trustees. I don’t think this is how a charity aiming to support people with ME should behave.
A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's 🧐 @nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan Thank you to @mediumwhite.bsky.social & co. for analysis #MECFS #NHS
I am incredibly grateful that valentine’s day is not really a thing in Italy, and my partner has no interest in valentine’s cards or manufactured drama surrounding this arbitrary day. Relationships are hard enough without the performative crap of valentine’s day.
Jay Rayner@jayrayner1.bsky.social · last yr.Let's send our warmest thoughts to the hospitality business on what is about to be the most complex night of the year. Everywhere full, of course. But also every table a two-top, and a number of toilet cubicles occupied by someone sobbing before the main course has arrived. Happy Valentine's Day.
The fate of freedom and democracy in Europe will now rest entirely in the hands of Europeans. So far they have not been up to the challenge of defending it. The question is whether they will be now--or whether European freedoms will go gently into that good night.
Travelling in France, so for the first time in about 15 years I am in a proper old-school gay bar. I had to ring a doorbell to get in. It feels slightly seedy. A few small groups but also single men alone at tables. A DJ and an empty dancefloor. It’s like being 18 in Brussels again, and I love it.
