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ME/CFS Science @mecfsskeptic.bsky.social · 2h

Don't follow their initiatives and work in the UK, but in terms of research, Action for ME has done some great work with DecodeME and now PRIME.
megenetics.org.uk/our-projects...

PRIME - ME Genetics Centre of Excellence

PRIME Action for ME, the University of Edinburgh and the ME Genetics Centre of Excellence have brought in over £800,000 […]

megenetics.org.uk

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Reposted by ME/CFS Science

Simon McGrath @simonmcg.bsky.social · 3h

Great summary of David Teller interviewing Chris Ponting about the new PRIME initiative to boost ME research in the UK and worldwide. This aims to for international consortia for genetics and for molecular biomarkers. Plus 15 new UK research collaborations. Plus conferences/workshops.

ME/CFS Science @mecfsskeptic.bsky.social · 3h

2) PRIME is a collaboration between the University of Edinburgh, the ME Genetics Centre of Excellence, and Action for ME, who will ensure that people with lived experience of ME/CFS are at the centre of the project.

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

10) The interview can be watched here:
virology.ws/2025/10/...

More info about PRIME is available on this page:
megenetics.org.uk/ou...

Trial By Error: Interview with Professor Chris Ponting on Building ME/CFS Research Infructure with PRIME | Virology Blog

By David Tuller, DrPH This is a crowdfunding month for UC Berkekely and Trial By Error. If you'd like to support my work, here's the link: https:/ ...

virology.ws

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

9) But once they have those genes, he said, they will be knocking on the doors of experts in those genes in the field of neurology and immunology and say: "We know you’re a busy person, but you should be working on ME/CFS."

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

8) Tuller asked if DecodeME sparked new interest in ME/CFS among researchers, and Ponting said that the problem is that we only have regions on the genome linked to ME/CFS. We don't know the exact genes yet - that's one of the things they want to analyse further.

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

7) Ponting said that patient participation was key to the success of DecodeME. They're still busy doing additional analyses of the data. They will only submit it for peer review when they have finished doing all their analyses.

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

6) Thirdly, PRIME will build a trained Patient and Public Involvement (PPI) pool of at least 100 people who have lived experience of ME/CFS. It will be available to ME/CFS researchers across the UK, enabling them to involve patients or carers in their studies easily.

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

5) The second goal is to strengthen international research networks by forming two global consortia, one with a focus on genetics and the other on other molecular biomarkers.
By collaborating and forming a network, they might be able to write stronger grant applications.

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

4) PRIME has three main aims. The first is to create at least 15 new collaborations. It will have a project manager who will actively go out and seek new links to industry and academia.

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

3) PRIME’s co-leaders are Professors David Price, Danny Altmann, Simon Carding, Douglas Kel, Karl Morten, and Dr Caroline Dalton.

They will hold an annual conference and 4 workshops per year. The first one wil focus on machine learning and AI in ME/CFS research.

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

2) PRIME is a collaboration between the University of Edinburgh, the ME Genetics Centre of Excellence, and Action for ME, who will ensure that people with lived experience of ME/CFS are at the centre of the project.

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ME/CFS Science @mecfsskeptic.bsky.social · 3h

1) Another interesting interview of Prof Chris Ponting by David Tuller.

They talked about PRIME, a new 4-year project that will provide an infrastructure to accelerate ME/CFS research. It received 0.8 million in funding from the Medical Research Council (MRC).

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ME/CFS Science @mecfsskeptic.bsky.social · 18h

5) Here's the link to the survey. There's one for people aged 18 (Adults) and over and one for people aged 17 and under (Young people).

2025 Big Survey

Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.

www.actionforme.org.uk

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ME/CFS Science @mecfsskeptic.bsky.social · 18h

4) If you are unable to fill out the survey, a friend, family member, or carer can fill it out on your behalf. If this is not possible, Action for ME may be able to help with telephone support.

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ME/CFS Science @mecfsskeptic.bsky.social · 18h

3) The survey is open to people with either suspected or diagnosed ME/CFS and people with Long Covid.

There is an option to save your temporary results and finish them later.

You don't have to fill in every question (they are all optional).

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ME/CFS Science @mecfsskeptic.bsky.social · 18h

2) Action for ME does these Big Surveys every 5 years. The last one was in 2019, so it's time for an update!

They are collaborating with the Discovery Research Platform for Medical Humanities at Durham University. The results will be analyzed by Dr Katharine Cheston.

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ME/CFS Science @mecfsskeptic.bsky.social · 18h

1) 🇬🇧 For ME/CFS patients in the UK only: Action for ME has opened its 2025 Big Survey! Last time, it had more than 4000 respondents, but hopefully this one will be even bigger.

The deadline for submitting your response is 27 January 2026.

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Reposted by ME/CFS Science

Tom Kindlon @tomkindlon.bsky.social · 1d

UK Action for ME Big Survey 2025

The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with @kacheston.bsky.social Dr Katherine Cheston at Durham University.

www.actionforme.org.uk/research-cam...

#MEcfs #PwME #CFS

2025 Big Survey

Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.

www.actionforme.org.uk

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ME/CFS Science @mecfsskeptic.bsky.social · 20h

For those who like to go into the details of tissue and cell-type analysis of the DecodeME results, also check out this blog by Paolo Maccalllini

paolomaccallini.wordpress.com/2025/10/04/c...

Tissue and cell-type analysis of DecodeME GWAS data

AbstractI applied the FUMA SNP2GENE module to genome-wide association summary statistics from the main cohort of the DecodeME study, comprising approximately 16,000 individuals with myalgic encepha…

paolomaccallini.wordpress.com

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Reposted by ME/CFS Science

Tom Kindlon @tomkindlon.bsky.social · 21h

Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet:
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS

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ME/CFS Science @mecfsskeptic.bsky.social · 20h

However OLFM4 also showed up in GWAS of insomnia, depression and recently fibromyalgia. So not sure if it necessarily points to the immune system.

Agree it's an interesting one, we've included it in our third table for being the sole protein-coding gene close to the SNP signal on chr13.

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ME/CFS Science @mecfsskeptic.bsky.social · 23h

Any studies about this worth having a look at?

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ME/CFS Science @mecfsskeptic.bsky.social · 23h

The study had only 42 ME/CFS patients (compared to 15.000 in DecodeME) so the signals it picked up are probably just random noise.

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ME/CFS Science @mecfsskeptic.bsky.social · 1d

Would be interested in hearing if there are any patterns in the candidate genes that we missed that other people are exploring?

ME/CFS Science @mecfsskeptic.bsky.social · 1d

1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.

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ME/CFS Science @mecfsskeptic.bsky.social · 1d

10) We also publish (very zoomed out) graphs of these regions so that you can look how the signal looks like and which protein-coding genes are nearby.

Link to the article:

Genes pointing to the brain: DecodeME part II - ME/CFS Science

DecodeME is the biggest study ever on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In our previousContinue readingGenes pointing to the brain: DecodeME part II

mecfsscience.org

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