DecodeME the ME/CFS Study

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

There’s still time to participate in Action for ME’s Big Survey! To take part and find out more, head to Action for ME’s website: actionforme.org.uk/research-campa… Thank you for supporting ME/CFS research.

📢Action for ME has launched The Big Survey We’re sharing this from DecodeME as we think many of you may be interested in taking part - but please note, this survey is separate from DecodeME’s research. For more information, FAQs, and to take part: tinyurl.com/yzfb8uhw

The ME Association are pleased to announce that we have awarded .@DecodeMEstudy the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study. Find out more: meassociation.org.uk/ir3e #MECFS #pwME #SevereME #MyalgicE #DecodeME #HowesGoudsmitAward

As we move into the next phase of our study, we would like to say a huge thank you. Going forwards, we will no longer be able to respond to emails & check social media. Stay up to date through our email list - sign up at the bottom of our new homepage: shorturl.at/46QSk

If you took part in DecodeME, your data will continue to be held securely by Edinburgh Uni. To update your details/ consent, please email decodeme@ed.ac.uk. For general info or support, please contact Action for ME at infosupport@actionforme.org.uk or 0117 927 9551.

We shared our initial DNA results over the past few weeks to a wonderful response & widespread media coverage. Now, we are moving into the next phase of the study & have updates to share. Check out our blog post to find out what’s next for DecodeME: shorturl.at/Y1hXm

Interested in supporting future ME/CFS research? @EdinburghUni & @actionforme are expanding on DecodeME’s research through projects like SequenceME & Long Covid, which will use DecodeME data to study the entire genome. Help support future ME/CFS research: shorturl.at/rRFD9

Check out @davidtuller1 's interview with DecodeME investigator Prof Chris Ponting to hear more about our Initial DNA results.⬇️ youtu.be/CGUmcB_YIaA?si…

Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb

As we approach the end of August, the new DecodeME website, over on the University of Edinburgh, will now be the central place for our updates and contact information. You can find our new website here: decodeme.ed.ac.uk

“This solid scientific data from DecodeME brings new hope. I look forward to seeing where these discoveries lead for pwME, & their families & carers.” -Claire Tripp, DecodeME PPI. A huge thanks to our participants & supporters for making DecodeME possible.

Check out The Guardian’s Science Weekly podcast on ‘Can science crack the mystery of ME?’ to hear scientists discuss ME/CFS and to hear from Nicky, a DecodeME participant. theguardian.com/science/audio/…

"Knowing that my DNA was a part of this study gives me a real sense of being part of something that is both exciting and could be the start of real change" We are incredibly grateful to every DecodeME participant. We would not be where we are today without you – thank you.

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(1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.

“I am proud that this study was run differently, with lived experience at its heart. Proud that our community stepped up en masse to participate and proud that we are at the forefront of scientific research into this debilitating illness." - Sian Leary, DecodeME PPI

“DecodeME shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” Andy Devereux-Cooke (PPI Member and Co-Investigator)

See you soon for our genetic results webinar! Spots are limited to 3000, and registering does not guarantee a spot. Don't worry - we will also be sharing it live to our Facebook page at the time facebook.com/decodeMEstudy as well as recording it so that you can watch it back.

Together we’ve marked a turning point, and on behalf of the DecodeME team - thank you 🙏

Join us TOMORROW for our genetic results webinar! Register here: shorturl.at/fnB67 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.