Peter White
Peter White
@mediumwhite.bsky.social
Europhile 🏳️🌈, lived in 🇬🇧🇮🇹🇨🇼🇧🇪 🇧🇩. Dedicated follower of science. Former textile engineer, now a Mgmt consultant. I believe in believing people.
374 followers252 following120 posts
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. 👏👏👏👏👏
Imperial 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
Peter White reposted
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...
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.
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
And while all people living with disease will be grateful to their researchers, the @decodemestudy.bsky.social team chose to climb an exceptionally difficult hill with this project. There are many other things they could have done. So the scale of the gratitude must recognise the huge challenge.
Peter White reposted
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-...
Peter White reposted
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
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?...
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.
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 🌻 ⬇️
Peter White reposted
📢 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...
116 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)
The final part is an explicit call to MPs, highlighting how people are being put into medical retirement, to fund research to gain some ability to provide meaningful care and therapies. "We can't turn back time, but we can change the future". 🎯. Thank you @binitakane.bsky.social
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.
Peter White reposted
Peter White reposted
#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
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/...
Peter White reposted
#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/...
Peter White reposted
Replying to @meactnet.bsky.social
Closure of Columbia's ME/CFS Research Center will slow understanding of this terrible disease & progress towards effective therapies. This decision disproportionately affects women & some of the most vulnerable in society. It would've been a privilege to work alongside Ian Lipkin. #pwME #ME #CFS
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.
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?
Peter White reposted
Peter White reposted
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...
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.
Peter White reposted
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.
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.
Peter White reposted
I look forward to this being published!
In a recent RCT of Larazotide for GI symptoms in Long Covid, “the clearance in the Larazotide group of the Spike clearance was much faster,” Dr. Fasano says. “About 30% of placebo group tested positive for spike, while eventually none of them had Spike in Larazotide group.”
Peter White reposted
Peter White reposted
Significant replication of combinatorial genetic signatures for Long Covid risk www.medrxiv.org/content/10.1...
Peter White reposted
More thoughts on the Parkinson's UK rebrand: There's a lot of information about the old @parkinsons.org.uk logo online... Some really useful thinking which is highly relevant to where ME and LongCovid are today. They created a brand with a real sense of purpose... theteam.co.uk/work/parkins...
Here's a report on the new branding, and the people which did it. fundraising.co.uk/2025/01/15/p...
I don't have Parkinson's, so my opinion does not matter, but having used @parkinsons.org.uk as an example of a great charity, I am somewhat disappointed by their new logo. Here is the before & after. What do you think? 🧵
I don't have Parkinson's, so my opinion does not matter, but having used @parkinsons.org.uk as an example of a great charity, I am somewhat disappointed by their new logo. Here is the before & after. What do you think? 🧵
Peter White reposted
A reminder that the BBC can still do accurate, informative analysis when it wants to. www.bbc.com/news/article...
Peter White reposted
This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 *combined* 😅 #MECFS #LongCovid