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Reposted by Peter White

Chris Ponting @cgatist.bsky.social · Sep 1

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...

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...

elxw.fa.em3.oraclecloud.com

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Peter White @mediumwhite.bsky.social · Aug 24

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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Reposted by Peter White

Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · Aug 14

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 · Aug 14

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 · Aug 12

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 · Aug 8

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 · Aug 8

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 · Aug 6

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

DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.

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Reposted by Peter White

Fiona C @drfionac.bsky.social · Aug 6

FAQs on the #DecodeME #MECFS results

www.decodeme.org.uk/faqs/

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.

www.decodeme.org.uk

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Reposted by Peter White

Tilman Andris @tilmanandris.bsky.social · Aug 6

#DecodeME on Channel 4 news

#MEcfs #MyalgicE #pwME #MEscience

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

ME linked to your genetics - early study indicates

YouTube video by Channel 4 News

youtu.be

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Reposted by Peter White

Binita Kane @binitakane.bsky.social · Aug 6

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-...

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 ...

www.decodeme.org.uk

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Peter White @mediumwhite.bsky.social · Aug 6

🎯

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Peter White @mediumwhite.bsky.social · Aug 5

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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Reposted by Peter White

Hilda Bastian @hildabast.bsky.social · Aug 1

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

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…

absolutelymaybe.plos.org

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Peter White @mediumwhite.bsky.social · Jul 30

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 · Jul 4

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 · Jul 4

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 · Jul 4

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 · Jul 3

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 · Jun 30

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 · Jun 29

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?...

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

YouTube video by David M Tuller

youtu.be

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Peter White @mediumwhite.bsky.social · Jun 20

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 · Jun 20

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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 🌻

⬇️

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Peter White @mediumwhite.bsky.social · Jun 20

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 · Jun 20

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.

Peter White @mediumwhite.bsky.social · Jun 20

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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Reposted by Peter White

Chris Ponting @cgatist.bsky.social · Jun 20

📢 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...

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