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

After years of doubt and stigma, people with ME/CFS finally have scientific validation.💙The University of Edinburgh DecodeME study found strong genetic evidence, proving it is a biological condition and is not “all in the mind.”
This breakthrough paves the way for better research, treatment, and is a turning point for parents, caregivers and patients.
👉 Read the full story here: https://zurl.co/B2gAA

#BabyYumYum #BYY #MECFS #ChronicFatigueSyndrome #DecodeME #MedicalResearch #HealthAwareness

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