What's next for DecodeME?

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.

The results webinar

More than 2,500 of you joined us live for the DecodeME results webinar, where the management team presented the findings, discussed what they mean for people with ME/CFS, and took part in a Q&A session.

If you weren’t able to join us, or would like to watch again, you can watch the recording and read the transcript.

A new website

As we approach the end of August, DecodeME's study team will change, and some staff will be leaving, but the project - and the data - will live on.

The DecodeME website will now be the central place for updates and contact information. To ensure everything remains accessible long term, we’ve moved it to the University of Edinburgh. The site contains all the same content, including results and contact details, and will continue to be updated as new findings are shared.

Next steps

DecodeME is not ending, it’s transforming. Here’s what lies ahead:

Further analysis: We will continue analysing the DecodeME dataset and publishing findings.

Data sharing: The dataset will remain available to bona fide researchers through our Data Access Process.

ME/CFS Research: We welcome the start of the PRIME project in October, which will build infrastructure and connections for research, as well as training people with ME and carers to get involved in directing research.

Future projects: We are seeking funding for Sequence ME and Long Covid which will use DecodeME data to analyse the entire genome.

Your data and consent

If you took part in DecodeME, your data will continue to be held securely by the University of Edinburgh. Any consents you gave, for wider use or recontact, remain valid.

To update your details or consent, please email decodeme@ed.ac.uk. (This inbox will be checked periodically, but we will be unable to respond to other queries.) To change your details, please include your name, date of birth and details of the change required in your email.

For general information or support, please contact Action for ME at infosupport@actionforme.org.uk or 0117 927 9551.

Staying updated

Going forwards, we will no longer be able to respond to emails or check our social media. We still aim to let you know of any key updates to the study.

The best way to stay up to date on new findings is through our email list. If you’re not already subscribed, you can sign up at the bottom of our new homepage. You can also check our website for further information.

Thank you

Lastly, thank you. Not just for your support throughout the study, but also for your response to our initial DNA results. We were blown away by your emails, comments and kind words.

This study has also been deeply meaningful for the DecodeME team. As one staff member put it: “I can honestly say this has been the most fulfilling role I have ever taken.”

We are proud of what we’ve achieved together, and incredibly grateful to every participant and supporter.

DecodeME would not be where it is today without you – thank you.

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