#decodeme — Public Fediverse posts

Video about DecodeME from the International ME/CFS Conference 2026. About 23 minutes.

https://www.youtube.com/watch?v=SrPWY9v22W4

"Prof. Dr. Chris Ponting presented findings from DecodeME, the largest ME/CFS genome-wide association study (GWAS) to date (over 20,000 participants), confirming the disease is polygenic with heritability concentrated in neural tissues and showing genetic overlap with fibromyalgia."

@mecfs

#MEcfs #LongCovid #Fibromyalgia #DecodeME #SequenceME #Genetics

Interview with Prof. Chris Ponting on recent ME/CFS research. Sadly, the headline says "chronic fatigue" but it's a pretty good article.

https://scienceillustrated.com/health/people-with-chronic-fatigue-have-been-misunderstood-for-decades-reputable-researcher-offers-surprising-advice-to-those-struggling-with-the-illness'

It does have errors. One line claims that Ponting has "found the biological cause of the illness." DecodeME research did yield important data but I think it's wrong to say the biological cause of ME/CFS was found.

[Oops, I was wrong, it doesn't mention Long Covid or SequenceME, hashtags removed]

@mecfs

#MEcfs #DecodeME #Genetics

🚨 Tomorrow, Wed, June 10
2 pm Eastern / 11 am Pacific

Free webinar from Solve ME on Sequence ME & Long Covid research study

"The Search for ME/CFS and Long Covid Biomarkers and Subtypes"

More details here:
https://solvecfs.org/event/sequence-me-long-covid-the-search-for-me-cfs-and-long-covid-biomarkers-and-subtypes/

Registration link:
(shows time in your time zone)
https://us02web.zoom.us/webinar/register/WN_nEjvCzlPQBOMFrr5f5ULuw#/registration

@mecfs @longcovid

#MEcfs #LongCovid #PostCovid #CovidIsNotOver #DecodeME #SequenceME #SolveME

RE: https://trialbyerror.org/2026/05/31/interview-with-chris-ponting-about-sequence-me-long-covid/

I have not watched this interview with Chris Ponting yet, but David Tuller always does good interviews!

On the Science for ME forum there are some interview highlights written by one of the forum members:

https://s4me.info/threads/sequenceme-genetic-study-from-oxford-nanopore-technologies-the-university-of-edinburgh-and-action-for-me.41663/page-13#post-696558

#MEcfs #LongCovid #SequenceME #DecodeME #Genetics #DNA #Science4ME

Interview with Chris Ponting about “Sequence ME & Long Covid”

https://trialbyerror.org/2026/05/31/interview-with-chris-ponting-about-sequence-me-long-covid/

More #SequenceME news coverage:

"UK to sequence genomes of 6,000 ME/CFS patients for treatment clues"

https://www.pulsetoday.co.uk/news/clinical-areas/mental-health-pain-and-addiction/uk-to-sequence-genomes-of-6000-me-cfs-patients-for-treatment-clues/

"The work will build on the earlier DecodeME study, which created the world’s largest ME/CFS research cohort."

@mecfs

#MEcfs #PwME #Genetics #Research #DecodeME

This blog post has a good overview of the project:

"DNA sequencing study to help pinpoint biology of ME gets £4.7m"

https://mecfsresearchreview.me/2026/05/12/dna-sequencing-study-to-help-pinpoint-biology-of-me-gets-4-7m/

@mecfs @longcovid

#MEcfs #LongCovid #SequenceME #DecodeME #Genetics #MedMastodon

Check out the latest News in Brief (May 11 - 17) from the Science for ME forum. It's a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.

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

Good news - Major funding secured for Sequence ME & Long Covid research 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 #Science4ME

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

Free webinar on June 10:

https://solvecfs.org/event/sequence-me-long-covid-the-search-for-me-cfs-and-long-covid-biomarkers-and-subtypes/

"… host Dr. Jessica Maya will talk to the DecodeME management team and recent Catalyst Award honorees Prof. Chris Ponting, Sonya Chowdhury, and Andy Devereux-Cooke about how their study could reveal many more genes, gene-regulation elements, and biological pathways that affect ME/CFS risk, advance efforts to identify new biomarkers for disease subtypes, and ultimately lead to new treatments."

@mecfs @longcovid

#DecodeME #SequenceME #MEcfs

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

More details about the Sequence ME and Long Covid research are in this government press release:

"Thousands of ME/CFS patients to benefit from first genomics study"

https://www.gov.uk/government/news/thousands-of-mecfs-patients-to-benefit-from-first-genomics-study

"…the study will enable the SequenceME programme to sequence the genomes of up to 6,000 ME/CFS patients, generating a world-first high-resolution genetic map of the illness."

20/n

@mecfs @longcovid

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

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

From ME Research UK :

ME Research UK-funded researcher Dr Jarred Younger has recorded a 15 minute explanation of deCodeME's recently published pre-print results. This covers background, method, results, and importance - https://tinyurl.com/5n6buzpj

#MECFS #decodeME @mecfs

In case you missed it:

"Scientists Find Links to Chronic Fatigue Syndrome in Genes and in the Gut Microbiome"

https://www.smithsonianmag.com/smart-news/scientists-find-links-to-chronic-fatigue-syndrome-in-genes-and-in-the-gut-microbiome-180987141/

A report on two recent studies on ME/CFS. One study found markers in the gut microbiomes of ME/CFS patients. The other study, DecodeME, published a pre-print that identified genetic signals in ME/CFS patients.

DecodeME is the largest DNA study of ME/CFS that has ever been done!

@mecfs

#MEcfs #PwME #DecodeME #Research

Just watched the DecodeME webinar presenting the initial findings, and talking about the reaction from the media, other researchers and the community.
The study is finished, they are working on the formal paper to be peer-reviewed and published, but future steps are getting funding for a long Covid/ME genetic study.
And possibly more on links between ME/CFS and fibromyalgia.

I anticipate finding shared genetic signals between all three, as the overlaps in people who have 2 or all 3 of these in a single person or in families seem strong, as well as the overlap in symptoms.

Note their website will close soon, the huge dataset will transfer to the University of Edinburgh for future research (95% of us signed up to be contacted for this).

https://www.decodeme.org.uk/initial-dna-results/

#DecodeME

Need an overview before the webinar? Here are 2 links from the DecodeME website:

1. Initial DecodeME DNA Results:

https://www.decodeme.org.uk/initial-dna-results/

2. X marks the spot where ME/CFS biology can be discovered:

https://www.decodeme.org.uk/x-marks-the-spot/

@mecfs

#MEcfs #PwME #DecodeME #GWAS

🚨 DecodeME Genetic Results Webinar tomorrow, Thursday, Aug 14, 2:30 PM BST

Register here:
https://us02web.zoom.us/webinar/register/WN_C82NbFK_TYGnJ_T6edmV-w#/registration

(registration link will show time in your time zone)

Note from DecodeME:
"There are limited spots to join on Zoom (registering does not guarantee a spot).

Don’t worry though, we will be recording it and we will also be sharing it live on Facebook at the time."

@mecfs

#MEcfs #PwME #DecodeME #GWAS

Here's the latest News in Brief (Aug 4-10) from the Science for ME forum, a weekly summary of ME/CFS and Long Covid news:

https://www.s4me.info/threads/news-in-brief-august-2025.45582/#post-632266

Don't miss the #DecodeME section!

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #Science4ME

@GollataCaitlyn Yes! Most of the #DecodeME discussion is over my head, but the little bits I can understand are exciting!

I'm really happy that the study was so large, and also that it included a lot more severe ME/CFS patients since the DNA kits were sent out and returned by mail. No need for folks to show up in person and then get PEM from the exertion.

#FYI #medicine #me #me_cfs #cfs #DecodeME

Original open access study PrePrint

DecodeME collaboration 6 Aug 2025, University of Edinburgh

Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome

https://www.research.ed.ac.uk/en/publications/initial-findings-from-the-decodeme-genome-wide-association-study-

Donation links to support the researchers behind #DecodeME

Links:
https://www.actionforme.org.uk/research-campaigns/our-research-work/genetics-centre-of-excellence/

https://www.actionforme.org.uk/sequenceme-first-of-a-kind-genetic-study/

https://www.actionforme.org.uk/research-campaigns/our-research-work/decodeme-donate/

https://donate.ed.ac.uk/support/ME-CFSResearch

Screenshot from latest Science for ME weekly update

#PwME #MEcfs #CFS @mecfs

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy, and research for the week of Aug 4 - 10.

Don't miss the news about the #DecodeME initial DNA results!

There's also news about #SevereME Day, Aug 8.

https://www.s4me.info/threads/news-in-brief-august-2025.45582/#post-632266

@mecfs

"Lack of ME research because of ‘medical misogyny’, says top scientist"

https://www.thetimes.com/uk/scotland/article/chris-ponting-misogyny-me-research-c09hp0hfg

"Professor Chris Ponting, who led a groundbreaking study into the disease (DecodeME) says it is 'highly stigmatised and incredibly female-biased'"

"…clinicians and scientists should be asking why his work was not done 15 years ago"

#MEcfs #PwME #GWAS #Genetics #DecodeME

"X marks the spot where ME/CFS biology can be discovered"

https://www.decodeme.org.uk/x-marks-the-spot/

A blog post on the science behind DecodeME

"Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world's biggest ME/CFS study – and its results are striking.

18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eight genetic signals [which] indicate that immune and neurological processes play a significant role in ME/CFS."

#MEcfs #PwME #DecodeME #Research