The ME Association are pleased to announce that we have awarded Decode ME the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study. Find out more: https://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 [email protected]. For general info or support, please contact Action for ME at [email protected] or 0117 927 9551.

We shared our initial DNA results over the past few weeks to a wonderful response and widespread media coverage. Now, we are moving into the next phase of the study and have some 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? @edinburgh-uni.bsky.social & @actionforme.bsky.social 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

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.

Following the release of initial results from the @decodemestudy.bsky.social, led by @cgatist.bsky.social from #IGC and @cmvm-edinburghuni.bsky.social, @theguardian.com has covered its impact in its Science Weekly podcast 👇 www.theguardian.com/science/audi...

(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.

Thank you for your response to our initial DNA results last week. We have been blown away by all your messages, support and kind words 🙏

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.

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM

Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encephalomyelitis (ME). We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.

'Each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure.' Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF

The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research. A huge thanks to all our participants for giving their time, energy & DNA to the project. Learn more about our findings: shorturl.at/XOVJ1

After the release of our initial DNA results last night, Nicky Campbell's Five Live radio programme will cover ME/CFS this morning, we expect around 10am www.bbc.co.uk/programmes/m...

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

Scientists find link between genes and ME/chronic fatigue syndrome

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

The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx). We're letting you know the timing in advance so you can pace beforehand. Thank you to our participants & supporters.

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, DecodeME PPI. Our PPI group 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, DecodeME PPI. Our PPI group is at the heart of #DecodeME, providing lived experience & expertise to ensure #pwME have their voices heard.

On #MECFSAwareness day, @cgatist.bsky.social talks about why we need more funding for research into Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome to help people living with this disease. @decodemestudy.bsky.social media.ed.ac.uk/media/Decode...

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.” 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 #pwME #myalgicencephalomyelitis

"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 Great Britain" 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 until 6th Jan! 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 and anticipate the DNA analysis to be complete by the middle of 2025 #MECFS #pwME

DecodeME looks forward to working with the SequenceME partnership on this exciting project. We hope they receive the required funding soon and look forward to receiving their data access application. We are also open to other data access requests, and our process for this can be found on our website

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. #DecodeME #MECFS #pwME

Dec 11: Prof Chris Ponting is #ThereForME! @cgatist.bsky.social leads @decodemestudy.bsky.social#ThereForME 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 and that they need.” - Prof Chris Ponting, DecodeME Investigator. To hear from those whose family has been most affected by severe ME, watch below ⬇️ news.sky.com/video/in-ful...

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