DecodeME results now due August 2025

The DecodeME team posted an update on 7 March 2024

• DecodeME was due to be completed by August of this year
• Extraction of the DNA from samples has taken far longer than anticipated.
• Our funders have agreed to a funded timeline extension
• DecodeME will now be completed before August of 2025 – results will be released as soon as possible before this date.

DecodeME will use small differences in the DNA of people with ME/CFS to look for biological causes of the disease.

We have an important project update to share with you.

DecodeME participants have done a great job completing questionnaires and returning spit samples. But the next step – extraction of DNA at UK Biocentre – has faced operational and capacity issues.

We have been working hard with UK Biocentre to resolve as many of these issues as possible and to avoid delays. While some issues were mitigated, it became obvious that we simply would not have enough time to perform all necessary data analyses by August 2024, the planned end date.

We discussed this situation with both our Scientific Advisory Board and funders. They agreed with our assessment and funding was awarded to extend the project until August 2025. This will give us sufficient time to finish the project.

We remain fully committed to completing this research to the highest possible scientific standards, ensuring that our findings are as robust as possible. We are acutely aware of the urgency to deliver the study results as soon as possible and we continue to work as hard as we can to fulfill these goals.

A message from our team:

“On the Patient and Public Involvement Steering Group, we recognise that this delay may be disappointing for you, as it is for us.  We live with, and see the impact of, ME/CFS on a daily basis. We’re grateful the funders are continuing to support this project with additional funding. DecodeME will deliver results as quickly as possible and we remain hopeful that the study will give us clues that lead to treatments”. Sian Leary, DecodeME PPI Steering Group member.

Watch our video message below

What’s next?

We continue to formulate plans to build on DecodeME. This includes discussing with other researchers plans for the replication and potential validation of any findings, and working towards securing the longer term future of the DecodeME cohort of participants.  We’ll share details of these plans as soon as we can.

We continue to be grateful for your support of, and engagement with, DecodeME. Your ongoing involvement, as a participant, continues to be essential for successfully completing the search for genetic causes of why people become ill with ME/CFS.

Find out more about the study from the website