DecodeME the ME/CFS Study

With your help, #DecodeME has built the world’s largest data set on ME/CFS. We are now welcoming data access applications from researchers who wish to use this in studies into ME/CFS and other diseases. Find out more ➡️ shorturl.at/wDEKQ

We’d like to say a HUGE thank you to everyone for helping us achieve so much this year. You have helped us create the largest cohort of ME/CFS in the world & we're now deep into analysing the data! We anticipate the DNA analysis to be complete by the middle of next year.

This week, the project team reached a significant milestone: we are into the final analysis stage which tests millions of DNA variants for their association to ME/CFS. Completion of the write-up and announcement of the results will follow as soon as possible.

"Being part of DecodeME’s PPI Steering Group has given me the chance to turn my daughter’s life-altering illness into something purposeful…” - Claire Tripp. PPI is at the heart of #DecodeME, providing lived experience & expertise to ensure #pwME have their voices heard.

This World ME Day, I reflect with pride on the Patient and Public Involvement (PPI)...this is research done differently – because we deserve better.” - Sian Leary. PPI is at the heart of #DecodeME, providing lived experience & expertise to ensure #pwME have their voices heard.

On #MECFSAwareness day, Professor Chris Ponting talks about why we need more funding for research into Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome to help people living with this disease: edin.ac/4jHErAZ @DecodeMEstudy

This #WorldMEday we want to take a pause & recognise the challenges, stigma & neglect that many #pwME face. We hope that #DecodeME can pave the way forward in accelerating research into M.E./CFS & will help to set a standard in research to include voices of pw lived experiences.

TW: Severe M.E. “the data backs up what many people with ME/CFS say: that they feel invisible and ignored.” - Professor Chris Ponting 🚨 Please note that this article is behind a paywall

We’re the world's largest genetic study of ME/CFS. We’ll be sharing our findings on here when available, so follow DecodeME to find out more about our study in the meantime, and help our science reach more people in the #MECFS community. 🧬 #DecodeME #MECFS #chronicillness #pwME

"What the research field now needs most urgently, says Ponting, is a robust scientific foundation…DecodeME, the largest ME/CFS study to date, is now taking a step in this direction in GB" shorturl.at/VJj06 To read in English, open in Chrome & use the translate function.

Happy New Year from #DecodeME. We're sending our best to you and your loved ones for the year ahead. We are now deep into the exciting stage of analysing the DecodeME data, and anticipate the initial DNA results to be available by the middle of 2025. #DecodeME #MECFS #pwME

#DecodeME is now closed for the holidays! Thank you for everything you have helped us achieve together this year & for your continued support. We are now deep into the exciting stage of analysing the data & anticipate the DNA analysis to be complete by the middle of 2025 #MECFS

Dec 11: Prof Chris Ponting is #ThereForME! @CGATist leads @DecodeMEstudy, the world’s largest ME genetic study. “My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”

TW: Severe ME “People’s lives have been blighted by this disease... they cannot get the care that they deserve & that they need.” - Prof Ponting, DecodeME Investigator. To hear from those whose family has been most affected by severe ME, watch below ⬇️ news.sky.com/video/in-full-…

This festive season, we’d like to encourage those with a loved one w/ME to gift an act of kindness. Ask what would be most helpful and comforting to them, what may seem small to you could be immensely helpful & meaningful to someone living with ME #DecodeME #RandomActsOfKindness

"DecodeME is not just the world’s largest study of the genetic causes of ME, but it was the first to place people with experience of ME at its heart." Prof Chris Ponting @CGATist on his journey to becoming a ME researcher for The Conversation⬇️

TW: severe M.E. "(#pwME) are forgotten, ignored & forsaken." - Prof Chris Ponting, @CGATist Read on to hear Nicole & Khalil’s experiences with severe M.E. ⬇️ bbc.co.uk/news/articles/…

2/2 The webinar will feature a number of speakers: • @SonyaChowdhury • @CGATist • Audrey Ryback • Prof Simon Carding & a 30-min Q&A session w. speakers & other GCoE partners on the future direction of ME genetic research 📧 email questions to [email protected]

For those interested in learning more about the future direction of ME genetic research, @ActionForME are hosting a webinar about the activities of the Genetics Centre of Excellence. More info below ⬇️

Hear @JennieJacques1 and @CGATist discuss what’s needed in ME research, including the objectives and science behind the DecodeME study, and the opportunities for data access. Watch on Jennie's YouTube channel ,‘The Monster in ME’ youtu.be/G-sdP7QuGnE?si…

Interesting study from @CGATist