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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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 · 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 · 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 · 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

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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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 · 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

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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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 · 06/03/2025

Is this what the next 4 years are going to be? Endless u-turns and change on policy. This is absurd.

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Nantigone @nantigone.bsky.social · 27/02/2025

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.tv

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.

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Peter White @mediumwhite.bsky.social · 20/02/2025

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.

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Ror Preston @rorpreston.bsky.social · 16/02/2025

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

Area chart showing ME funding (£6m) vs. MS, IBD and Parkinson's by the UK Government, 2015-20

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Peter White @mediumwhite.bsky.social · 14/02/2025

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.

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Phillips OBrien @phillipspobrien.bsky.social · 13/02/2025

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.

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Peter White @mediumwhite.bsky.social · 09/02/2025

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.

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Peter White @mediumwhite.bsky.social · 07/02/2025

I look forward to this being published!

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Chris Giles @chrisgiles.ft.com · 07/02/2025

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 🧵

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George Monbiot @georgemonbiot.bsky.social · 07/02/2025

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. 🧵

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Peter White @mediumwhite.bsky.social · 05/02/2025

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...

theteam.co.uk

Parkinson's UK

We turned Parkinson's UK into an active brand campaigning to find a cure and change misconceptions surrounding Parkinson’s

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Peter White @mediumwhite.bsky.social · 05/02/2025

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? 🧵

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Ian Dunt @iandunt.bsky.social · 05/02/2025

A reminder that the BBC can still do accurate, informative analysis when it wants to. www.bbc.com/news/article...

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Ror Preston @rorpreston.bsky.social · 01/02/2025

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

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Peter White @mediumwhite.bsky.social · 01/02/2025

It will be interesting to see what industries Canada and Mexico (and practically everyone else) target in return. Expect to see severe tariffs on products from industries in swing states with mid-term elections. on.ft.com/3PV68sS

on.ft.com

Donald Trump threatens to ignite era of trade wars with new tariffs

US president says he will hit Canada, Mexico, China and EU with levies as he targets major trading partners

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Dan Neidle @danneidle.bsky.social · 01/02/2025

Fraudsters are setting up fake banks on Companies House - here's how we found 16 in three minutes... using an automated tool we've just made freely available. Thread:

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Peter White @mediumwhite.bsky.social · 31/01/2025

This is incredibly exciting news for people with sickle cell. Fantastic stuff!

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Peter Stefanovic @peterstefanovic.bsky.social · 31/01/2025

This is fantastic news. ‘Groundbreaking’ potential cure for sickle cell in England approved for NHS use Clinical trials find one-time gene therapy exa-cel offers ‘functional cure’ in 96.6% of patients 👏 www.theguardian.com/society/2025...

theguardian.com

‘Groundbreaking’ potential cure for sickle cell in England approved for NHS use

Clinical trials find one-time gene therapy exa-cel offers ‘functional cure’ in 96.6% of patients

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George Monbiot @georgemonbiot.bsky.social · 29/01/2025

This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵

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Peter White @mediumwhite.bsky.social · 30/01/2025

Perhaps I’m hypocritical on this, but I’m fine with a third runway at Heathrow. The ability to travel has been fundamental to my personal and economic growth. I don’t wish to deny that to others. I would prefer we invested in high-speed trains, but I don’t think “travel less” is the solution.

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Peter White @mediumwhite.bsky.social · 29/01/2025

I was really hoping BlueSky wouldn’t have so many of these probably fake bot accounts. Despite having no interest in boobs, I am getting loads of follows from these false accounts. What do people do, block or ignore?

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Peter White @mediumwhite.bsky.social · 28/01/2025

It’s is absolutely crazy what lengths scammers will sometimes go to. It’s a travesty that some people fall for this crap.

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Prof Danny Altmann @daltmann.bsky.social · 27/01/2025

#HolocaustMemorialDay. Remembering my Grandmother Bertie, and my uncle, Martin, who both died at Auschwitz

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Peter White @mediumwhite.bsky.social · 27/01/2025

Exciting to see electric busses already operating in Milan. I hadn’t realised these systems were already operational. #EV #NetZero

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Peter White @mediumwhite.bsky.social · 27/01/2025

Major step achieved towards buying a ruin in Italy. We met a current owner. We planned every eventuality but, having heard bad things about the seller, we worried it would go badly. We nearly didn’t go. Long story short: it went amazingly. Lesson learned: Good things can only happen if you try.

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