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...

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.

FAQs on the #DecodeME #MECFS results www.decodeme.org.uk/faqs/

#DecodeME on Channel 4 news #MEcfs #MyalgicE #pwME #MEscience youtu.be/DWCF1_-0yP0?...

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-...

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.

📢 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...

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

@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/...

#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/...

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.

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.

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.

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.

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.

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!

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 🧵

Significant replication of combinatorial genetic signatures for Long Covid risk www.medrxiv.org/content/10.1...

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. 🧵

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...

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? 🧵

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

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

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

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:

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

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...

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. 🧵

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.

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?

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

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

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

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.

While initial experiences of Bluesky were that I had considerably less interaction that the other place, that now seems to be changing and I am interacting more and more here. Fingers firmly crossed this trend continues.

Etymology question - a book I am reading is talking about “buttonholing” - holding someone in a (often one-sided) discussion against their will. Italians have an expression “mi ha attacato un bottone” which means the same thing. Is there a common ancestor, or did they evolve independently?

For adults who earn a reasonable wage, I think “item” presents are very wasteful - many are unwanted and end up in landfill. Give people time and share something you enjoy. These are both cheaper and more valuable.