Coming soon – DecodeME’s Second Questionnaire

05 December 2023


We wanted to give you a quick heads-up on our plans for a second questionnaire.


We would like to thank all participants for their amazing help to date and to ask for their continuing support with this additional activity.


  • All existing participants, who have already completed the first questionnaire, will shortly be invited to complete a second questionnaire


  • This second questionnaire is designed to give scientists more detailed information on ME/CFS


  • Completing this second questionnaire is completely optional, but your answers will help us understand more about ME/CFS.


  • Participants who completed a paper copy of the first questionnaire will be sent a paper copy of the second questionnaire along with their invitation to participate


  • To give people who are completing a paper copy a little extra time, we will send the paper copies out in December and they should be posted back to us by 15 February 2024


  • Invitations to complete the second questionnaire online will be send to all other participants at the beginning of January. You will have until the 29 February 2024 at 5pm to complete the online version of the second questionnaire


When we created the first questionnaire, there were many more questions we would like to have asked, but to keep the questionnaire to a manageable length, we decided we could not include them all.


This second questionnaire is designed to complement the first by delving deeper into your experience of ME/CFS. It asks questions suggested by people with ME/CFS, as well as standard questions previously used in other studies. These standard questions will enable useful comparisons to be made with other illnesses and populations. Your answers to these questions will be useful to both the DecodeME study and other future research.


This is exciting because it means we can harness even more power from this significant research project for the understanding of ME/CFS. The questionnaire data collected from everyone is incredibly useful in our research.  As we learn more about the genetics of ME/CFS, we hope to also learn how this impacts symptoms, severity and more. But DecodeME is not only about understanding the genetics potentially involved in ME/CFS but also your lived experience, from the questionnaire responses, that forms the largest data set on ME/CFS in the world and which provides a foundation for further research.


We will be emailing out invites for this second questionnaire around the beginning of January 2024, so please check your inboxes and spam folders around that time. Invites will be sent to all DecodeME participants regardless of whether they were invited to the DNA stage or not. Paper copies will be sent in December 2023 to those who previously preferred them.


We hope that anyone who receives an invitation to complete the second questionnaire will choose to do so. However, your participation remains entirely voluntary, and you will continue to be a participant of DecodeME, even if you decide not to complete our second questionnaire.