Peter White

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...

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.

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

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).

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.

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.

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 - DecodeME Our FAQs created by people with ME/CFS working with the project team and science blogger and patient, Simon McGrath. It will be updated as the project progresses.

FAQs on the #DecodeME #MECFS results

www.decodeme.org.uk/faqs/

YouTube video by Channel 4 News ME linked to your genetics - early study indicates

#DecodeME on Channel 4 news

#MEcfs #MyalgicE #pwME #MEscience

youtu.be/DWCF1_-0yP0?...

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 ...

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-...

🎯

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.

Six Months Later: What Their Response on ME/CFS Tells Us About the Cochrane Collaboration - Absolutely Maybe Six months ago, I wrote a post called “When journal, scientific society, and community values clash.” I recounted the tale of the…

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

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.

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.

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.

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

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?

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

YouTube video by David M Tuller Interview with lead author of new ME/CFS "blood-based biomarker" study from University of Edinburgh

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.

This is a very important paper to a lot of people.

Thank you for publishing it.

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.

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?

📢 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...

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.

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

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?

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.

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)