Inviting More Participants to Donate DNA

26 June 2023


An audio recording of this blog post can be found below:


  • DecodeME can now invite even more people to donate their DNA.


  • This is because we will apply an additional scientific method to ensure that our genetic findings are due to ME/CFS and not to common co-occurring conditions.


  • This new opportunity came after reviewing our genetics analysis steps, and after positive discussions with our Scientific Advisory Board. 


  • The new plan will make DecodeME more inclusive and more likely to increase its number of discoveries


  • DecodeME study criteria are still based on two internationally-applied sets of criteria, the Canadian Consensus and IOM Criteria, both of which require post-exertional malaise. Furthermore, participants are still required to have an ME/CFS diagnosis to participate. 


  • Some, but not all, participants who were previously unable to donate their DNA, will now be invited to do so by email.


In the past few months, we have been working to widen participation in the DNA stage without affecting the validity of our genetic analysis. In short, we have developed a method which enables us to check that any genetic findings are due only to ME/CFS diagnosis, and not due to common co-occurring conditions. We achieve this by doing the genetic analysis both with and without people with each such condition. If you’re interested in finding out more read our analysis plan HERE.


This is exciting because it means we can collect more DNA data to help us find the genetic causes of ME/CFS. Also, our DNA cohort will better reflect the breadth of symptoms and experience within the ME/CFS community. This approach has support from our Scientific Advisory Board, and Patient and Public Involvement Steering Group. The change was reviewed and given a favourable opinion by the project’s ethics committee and was incorporated in our study protocol. 


So now we can harness even more power from this significant research opportunity for ME/CFS.

Many participants who were not previously invited to provide their DNA will now be invited via email to do so. These emails will be sent out in June and July 2023, so please check your inboxes and spam folders.


 We acknowledge that not every participant will be invited, and that this will be disappointing to them. It is important to emphasise that this does not mean that we are questioning the diagnosis of these participants; the questionnaire data collected from everyone remains incredibly useful in our research.  DecodeME is not only about genetics and the data from the questionnaire responses form the largest data set on ME/CFS in the world and provides a foundation for further research.


We hope that anyone who receives an invitation to provide a DNA sample will choose to do so. The more people who take part in this stage, the better the chances of identifying ME/CFS’s biological causes which could lead to possible treatments. 


June 2023