Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of May 11 - 17.

https://www.s4me.info/threads/news-in-brief-may-2026.50158/#post-693584

Highlight: Major funding secured for Sequence ME & Long Covid! (DecodeMe project)

https://www.actionforme.org.uk/major-funding-secured-for-sequence-me-long-covid-a-decodeme-project/

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #SequenceME #DecodeME

Yesterday, as part of a long thread on ME/CFS Awareness Day, I posted that the SequenceME research project had gotten partial funding.

"Major funding secured for Sequence ME & Long Covid, a DecodeMe project"

https://www.actionforme.org.uk/major-funding-secured-for-sequence-me-long-covid-a-decodeme-project/

This is good news! 🎉 More funding is still needed, but this is a good start.

I'm re-posting today because it was buried in my long thread & may have been missed by a lot of folks.

@mecfs @longcovid

#MEcfs #LongCovid #Genomics #SequenceME #DecodeME #MedMastodon

#MEAwarenessDay

ME/CVS is geen mysterie, maar een complexe ziekte: infecties (bv. Long COVID), genetische aanleg en afwijkingen in immuunsysteem/zenuwstelsel spelen een rol. Wetenschap bevestigt: dit is fysiek, niet psychisch. 💙 #MEcvs #OnderzoekTelt #DecodeME

RE: https://mas.to/@eleanorrees/116263420791396664

Donations requested for the #SequenceME genetic research project which builds on the #DecodeME research. Read more about the project here:

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

The JustGiving donation link is in the quoted post.

Thanks to @eleanorrees for setting up this donation page ❤️

And happy birthday! 🎉

@mecfs
@longcovid

#MEcfs #LongCovid #Research #MedMastodon #Fundraising

From the ME/CFS Science Blog:

"2025: looking back on a year of ME/CFS research"

https://mecfsscience.org/2025-looking-back-on-a-year-of-me-cfs-research/

Discussion of ME/CFS research done in 2025 starting with DecodeME:

"DecodeME is the largest ME/CFS study ever conducted; more than 15,000 in the United Kingdom participated by sending their DNA through the mail."

@mecfs

#MEcfs #PwME #DecodeME #Research #LongCovid

"Building Gold Standard Patient and Public Involvement - DecodeME Conference Presentation"

https://www.youtube.com/watch?v=S3SScaC0L1o

Video posted by Action for ME, a recording of the Nov. 12 'Patient Advocacy Panel' session.

"Learn how Patient and Public Involvement worked within the world's largest ME/CFS study - DecodeME, presented at The International Conference on Clinical and Scientific Advances on ME and long Covid in Porto, Portugal."

@mecfs

#MEcfs #DecodeME #PatientAdvocacy #ActionForME

Interview with Professor Chris Ponting on Building ME/CFS Research Infructure with PRIME

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://crowdfund.berkeley.edu/project/47768
(Donations are tax-deductible for US taxpayers.)

**********

The UK Medical Research Council recently awarded £800,000 over four years to PRIME, a partnership between Action For ME and the University of Edinburgh. PRIME will seek to develop a research infrastructure to pursue investigations into ME/CFS. The funding starts this month.

According to Action For ME, the goals of PRIME are:

“1. Coordinate and engage researchers by creating at least 15 new research collaborations. We will bring together researchers from a range of backgrounds, along with private sector partners to investigate the genetics, biomarkers and disease mechanisms behind ME/CFS.

“2. Strengthen International Research Networks by forming two global consortia, one with a focus on genetics and the other on molecular biomarkers. The aim of the consortias will be to share data, replicate research and create a shared research standard.

“3. Build a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers). This will be the world’s first large scale PPI pool available for ME researchers across the UK so that their research can be created and shaped by people with lived experience.”

Chris Ponting, a geneticist at the University of Edinburgh, is the lead investigator of DecodeME, a study that recently identified eight spots on the genome implicated in ME/CFS. Professor Ponting, along with Sonya Chowdbury, Action For ME’s CEO, will oversee PRIME. I spoke last week with Professor Ponting about the project and related issues. (I also spoke with Professor Ponting a couple of months ago about the DecodeME findings.)

(View the original post at virology.ws)

#DecodeME

Blog post explaining results from the recent DecodeME research.

"DecodeME: the biggest ME/CFS study ever"

https://mecfsscience.org/decodeme-the-biggest-me-cfs-study-ever/

"More than 15,000 patients shared their DNA to uncover the underlying pathology of the disease. The results show 8 hits: regions in the human genome where ME/CFS patients differ significantly from controls. Most of the implicated genes point to the brain and nervous system."

@mecfs

#MEcfs #PwME #Research #DecodeME