DecodeME project update

Quick summary: 

  • DecodeME has welcomed its first test participants and has received valuable feedback from them.
  • We are working to make improvements to the questionnaire after receiving feedback from these participants in the testing phase.
  • We are creating a new online system for the online questionnaire as we are no longer working with the questionnaire system adapted from the You and ME Registry (with Solve ME) due to technical challenges.
  • Once the online system is ready, more participants will be invited to take part in the continued testing phase before the study launches its full recruitment.

We will send you your invitation to take part once the study full opens recruitment and will let you know when there are more updates.


More information if you have the time and energy:

We’re continuing and expanding our work to make the study as accessible and efficient as possible to ensure people with different severities of ME/CFS are able to participate in a way that works for them.

We’re excited to have welcomed the first cohort of test participants with ME during Phase 1 of the DecodeME study launch.

Much of the feedback was very positive, with over half saying it was easy or very easy to complete the consent form and questionnaire. The feedback also showed us ways we can improve, for example:

  • 76% said that they “needed to read the questions more than once”
  • 68% also said they “had to do it in multiple goes, but this was okay as this was normal for [them] with [their] symptoms”
  • We received feedback that some of the language was confusing/difficult to understand.

We will now be taking another look at the participant questionnaire which has been designed alongside people with ME and clinicians and will be including this feedback in a revised version.


Alongside this, we’ve been experiencing some challenges adapting the You and ME Registry (with Solve ME) for online participation in DecodeME. We’d planned to use their questionnaire system for DecodeME. However, over recent months we have encountered numerous technical challenges that we have been working together to try to overcome.

We recently jointly agreed that unfortunately it just wasn’t possible to do all the necessary work within the timescales required and it was leading to delays in fully launching the study to online participants.

We’ve now decided to create our own online system, and we’re already making very good progress. This has also given us the chance to enhance the questionnaire, based on the feedback from our testing phase.

When our new online system is robust and ready, we’ll also test our improved questionnaire on another small group of people with ME. Once feedback has been collected and further improvements made, we’ll launch the study to all with the aim of recruiting 25,000 participants.

We appreciate that some will be disappointed that we’re still not quite ready to fully open recruitment. We want to emphasise that even with this additional work we’re still on course to complete the study within its allotted time. We are confident this revision of work will allow us to deliver a study of even higher quality, which is something the ME/CFS community deserves and we appreciate have been waiting a very long time for.


We’re grateful for your patience as we tailor the study to ensure people with different severities of ME/CFS can take part.  If you’ve registered your interest in taking part via our website, you’re still ‘first in line’ to hear when we’ll be fully opening recruitment. If you haven’t registered, you can still do so HERE.