What We Achieved in 2022

Summary:

• We opened phase 1 to a few hundred paper participants in January. Their feedback led to us rewriting and improving the study questionnaire.

• We fully launched the study on 12 September to all participants and opened the online portal for registrations. In the first week, over 10,000 people signed up and over 7,000 of those had already completed the DecodeME questionnaire.

• At the time of writing, we have over 23,000 people registered as a user on the DecodeME participant portal. Of those, over 17,000 participants have completed the questionnaire, and nearly 9,000 people have already been sent a spit kit.

• The DecodeME study protocol was published in BMC Neurology in July making the study’s methods and design transparent and available to researchers all around the world.

• We held various webinars throughout the year and a list of these and their recording and transcripts can be found on our website.

More detail:

Phase 1 launch

We officially launched the first participant phase in January 2022 and opened the study up to a small number of people who had originally told us they wanted to take part via a paper questionnaire. This gave us the opportunity to test the process and make any necessary changes based on real-life experience.

This turned out to be extremely valuable as we ended up completely rewriting the questionnaire following feedback. This meant it took us a bit longer than expected to launch phase 2 of the study, but it also means that we ended up with a brand new DecodeME questionnaire which is much more robust and more accurately records people’s experiences of life with ME.

Phase 2 launch

Despite the unfortunate passing of the Queen three days before our planned launch for online participants, we were able to stick to our plan and launched to the study’s biggest cohort on the 12^th of September. By the end of the first week, we had over 10,000 people sign up and over 7,000 of those had already completed the DecodeME questionnaire.

At the time of writing, we have had over 23,000 people register as a user on the DecodeME participant portal. Of those, over 17,000 participants have completed the questionnaire, providing important data on the lived experience of ME. Nearly 9,000 people have already been sent a spit kit and invited to provide their DNA for the genetic part of the study.

Study protocol published

In July, the DecodeME study protocol was accepted for publication in BMC Neurology. This means that other researchers around the world are able to exactly follow the methods in the DecodeME study and replicate it in their own countries.

Webinars

We held various webinars throughout the year which gave people the chance to get to know some of the people behind the project, learn more about the science underpinning the research, and have the opportunity for questions to be put to the panel.

Looking ahead

We are excited about what DecodeME will bring for people with ME/CFS in 2023.

We are already analysing the information data from over 17,000 questionnaire participants and hope to get our initial analysis published soon.

We will be refreshing our efforts to achieve our aim of collecting DNA from 25,000 people with ME, including 5,000 who developed ME/CFS following Covid-19.

Thank you for your support for the study. We wouldn’t be able to do it without you!