iiinova — where your digital self keeps evolving

Peter White @mediumwhite.bsky.social · 12/07/2026

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.

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Peter White @mediumwhite.bsky.social · 10/12/2025

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. 👏👏👏👏👏

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Chris Ponting @cgatist.bsky.social · 01/09/2025

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.com

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...

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Peter White @mediumwhite.bsky.social · 24/08/2025

No sure I agree. I sit in that bucket. I can and have jogged, but I then end up with PEM, which doesn’t necessarily stop me from jogging again, but it makes all my symptoms (energy loss, brain fog, shits, chest pain, insomnia, etc etc etc) flare for a few days.

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 14/08/2025

After 3 years photographing 50 people with #MECFS, I’ve learnt more than in the 40+ years since my own diagnosis. #LivesWeCannotLive #PwME

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Peter White @mediumwhite.bsky.social · 14/08/2025

I want to be a part of it: Mew York Mew York Meeeeeiuuuwwww York! (Sorry, but I do like the sound of this cat focussed city).

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Peter White @mediumwhite.bsky.social · 12/08/2025

Thank you for linking with me Sarah. I will have a look at it this week. Also - I have been sharing your incredible interview with 5live from some weeks ago. Thank you so much. You are a powerful and persuasive voice.

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Peter White @mediumwhite.bsky.social · 08/08/2025

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.

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Peter White @mediumwhite.bsky.social · 08/08/2025

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.

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Binita Kane @binitakane.bsky.social · 06/08/2025

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-...

decodeme.org.uk

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 ...

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Peter White @mediumwhite.bsky.social · 05/08/2025

Many people are nervously looking forward to this news. Whatever the outcome, thank you and congrats. After the SMC curveball during the recent Today Programme interview, it would be greatly appreciated if anyone doing interviews could anticipate and prepare to refute psychological narratives.

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Peter White @mediumwhite.bsky.social · 30/07/2025

How does that conclusion emerge from that study? Did the researchers make any enquiries at all about levels of stress and loneliness? No. People need to stop drawing psychological conclusions without any supporting evidence whatsoever. It’s bad science.

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Peter White @mediumwhite.bsky.social · 04/07/2025

Well your departure appears to have coincided with their huge electoral win, so thank you for departing the Labour Party and helping remove the Tories from government.

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Peter White @mediumwhite.bsky.social · 04/07/2025

So he was undermined by his party, which you say is a bad thing… Yet when he undermines and splits the Labour vote, apparently it’s OK? This is why the left loses elections.

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Peter White @mediumwhite.bsky.social · 04/07/2025

So he just completely undermined his party’s position, and the best future for those Labour is created to support.

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Peter White @mediumwhite.bsky.social · 03/07/2025

How many elections did he win for Labour? How many elections and referendums did he lose? Why is the left obsessed with being out of power and in opposition?

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Peter White @mediumwhite.bsky.social · 30/06/2025

This is very good news. Huge congratulations to the Action for ME team and @cgatist.bsky.social for making this happen. A major achievement.

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Peter White @mediumwhite.bsky.social · 29/06/2025

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?...

youtu.be

Interview with lead author of new ME/CFS "blood-based biomarker" study from University of Edinburgh

YouTube video by David M Tuller

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Peter White @mediumwhite.bsky.social · 20/06/2025

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.

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Peter White @mediumwhite.bsky.social · 20/06/2025

This is a very important paper to a lot of people. Thank you for publishing it.

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Peter White @mediumwhite.bsky.social · 20/06/2025

I don't know, and I don't want get into individuals' personal situations. What I can see is that she appears to understand and communicate the issues very well, and that is exactly what these diseases need.

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Peter White @mediumwhite.bsky.social · 20/06/2025

Thank you for this study and paper. Do you see a path for this group of biomarkers to gain wider acceptance and become a clinically or research-used biomarker? What does that path look like?

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Peter White @mediumwhite.bsky.social · 19/06/2025

nb: videos have been trimmed to remove pauses in the words and fit into the 2m 20s video time limit on this platform. No words have been cut out. Word sequence has not been changed.

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Peter White @mediumwhite.bsky.social · 19/06/2025

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

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Peter White @mediumwhite.bsky.social · 19/06/2025

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?

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Peter White @mediumwhite.bsky.social · 19/06/2025

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.

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Peter White @mediumwhite.bsky.social · 19/06/2025

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)

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Peter White @mediumwhite.bsky.social · 18/06/2025

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.

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Peter White @mediumwhite.bsky.social · 18/06/2025

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.

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Peter White @mediumwhite.bsky.social · 30/05/2025

What those emails are actually doing is giving you permission to harass them and their employees across Social Media. A Railway Journal did this to me and soon removed me once I pushed back.

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Daniel Norcross @norcrosscricket.bsky.social · 05/05/2025

It’s funny how money can leave your account on a bank holiday, but can never go in. Like a reverse Hotel California.

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Long Covid Kids @longcovidkids.bsky.social · 26/04/2025

#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

Screenshot of a just giving page. ‘Seamus’s fundraiser for Long Covid Kids.
The total raised so far is £2,054 of £3000 target.
Seamus is standing on a running track wearing a black hoodie and shorts with white socks and trainers. He is smiling. It is a sunny day.

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Peter White @mediumwhite.bsky.social · 23/04/2025

@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/...

science.org

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.

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 17/04/2025

#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/...

ru.nl

Postviral Ethics - RCPS & PCNN | Radboud University

Read the workshop report and check out the presentations.

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Peter White @mediumwhite.bsky.social · 06/04/2025

Frustratingly the Medical Research Council and National Institute of Health Research are barely spending anything on researching the condition. Prof @daltmann.bsky.social has spoken publicly about the funding agency’s disinterest, but still things are not changing.

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Peter White @mediumwhite.bsky.social · 05/04/2025

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.

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Chris Ponting @cgatist.bsky.social · 22/03/2025

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

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Peter White @mediumwhite.bsky.social · 19/03/2025

I have known Stephen for 4 years on SM. He is (was) an NHS radiologist but was disabled by ME/CFS due to LongCovid. He is now mostly bed bound. If he cannot access PIP, what will happen to him? I think we know the answer, we just don’t want to write it down.

Stephen is wondering what will happen to him, a qualified NHS radiologist who was left disabled and bed bound by ME/CFS following LongCovid, when he is no longer able to access PIP.

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Peter White @mediumwhite.bsky.social · 19/03/2025

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.

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Peter White @mediumwhite.bsky.social · 17/03/2025

Great - but perhaps there may be a better graphical style than that used on Severance?

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Peter White @mediumwhite.bsky.social · 17/03/2025

Presumably the @meassociation.bsky.social is organising a campaign around this hugely important issue? Perhaps we can use the materials they have made on the topic?

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Maike Osborne @maosbot.bsky.social · 14/03/2025

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

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Peter White @mediumwhite.bsky.social · 16/03/2025

Glad you’ll still be writing. Given the move to the FT, will you still be reviewing such a broad range of places (including price range)? And if the place is decorated in “fuck you”, will they FT let you say so?

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Peter White @mediumwhite.bsky.social · 10/03/2025

Hi Professor - you previously raised concerns about UKRI:MRC / NIHR lack of interest in funding LC studies. Have you seen any change in that? A bunch of us wrote to DHSC in the context of funding for the ME/CFS delivery plan, but they appear to be in denial about issues. Any changes?

This is a screenshot of a letter from the UK DHSC in response to a group letter from people with ME calling for research funding for IACCs including ME/CFS.

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