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. 👏👏👏👏👏

ME Association@meassociation.org.uk

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...

elxw.fa.em3.oraclecloud.comPRIME Project ManagerThe 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...

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

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

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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

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

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I really appreciate how Dr Kane points out the harm that the psychological narratives have done. Drawing parallels with other diseases is so valuable. we can learn so much from what others have done, and how those diseases are being overcome.

Dr Kane calls for investment, but also easier use of off-label therapies on the NHS. This would be a new policy for some ME organistions, and could be a really wellcome change. Should we wait for RCTs for every drug when there are people in such desperate circumstances?

Part 2 of Prof Chris Ponting's presentation to the UK APPGs on ME and Long Covid regarding the failure to fund research into ME and Long Covid, two devastating diseases affecting over 400,000 people in the UK.

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

Long Covid Kids@longcovidkids.bsky.social

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-...

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.

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.

Stephen MIA@stephenmia.bsky.social

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

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

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...

arte.tvLe syndrome de fatigue chronique - L’EM/SFC, une maladie trop peu (re)connue - Regarder le documentaire complet | ARTEDes millions de personnes souffrent d'encéphalomyélite myalgique (EM) : un épuisement extrême et persistant, pour lequel il n'existe aucun remède. Enquête.

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

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

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.

I look forward to this being published!

PolyBio Research Foundation@polybiorf.bsky.social

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

If I told you that the Bank of England upgraded its growth forecasts yesterday, would you believe me? It did.... i HAvE nOt gOne CRazY - honest This is a hill I am prepared to die on - the BoE and others (all central banks, IMF, OECD etc etc) report their "forecasts" in a terrible way 🧵

Peter White reposted

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1. I know this will cause me trouble, but it dismays me to see fellow environmentalists dismissing Small Modular Reactors (SMRs) out of hand, in some cases clearly before they have understood the technologies involved or their potential uses. 🧵

In the end the proof is in the pudding, and we will be able to measure the success of the new brand through the organisation's future fundraising (KPIs: total income growth, income/fundraising cost (ROI), and in-year donations). I hope they continue to grow. I fear they won't.

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There is a story about the flower - apparently it was named after the person who identified Parkinson's disease. But a logo should be instant! It should communicate fast! Who has time to think and interpret the artwork? If you have to explain the logo, then it has failed.

I thought Parkinson's UK was about driving change for people and families with the disease? But flowers are associated with the dead - we give flowers at funerals, we put flowers on graves. Are they now just 'accepting the inevitable'? I really hope this isn't a step backwards.

What I liked most about the old logo was it's energy. It was punchy! That logo showed an organisation with a mission so important that it was stamped EVERYWHERE! I wish. I WISH that there were an ME charity with such a clear mission. Perhaps "Solve ME" gets close?

Again, my view does not matter, but repacing such an important mission statement with a flower just feels to me like you're giving up. It has the visual impact of "thoughts and prayers". "Sorry we can't help you. Have a flower to feel better".

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