DecodeME – the next step

Via a newsletter, DecodeME has confirmed plans for a second questionnaire designed to delve more deeply into participants’ experiences of ME/CFS by asking questions suggested those with ME/CFS, as well as standard questions previously used in other studies. The standard questions will enable useful comparisons to be made with other illnesses and populations and the data will be used by the DecodeME study and other future research.

  • 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 the second questionnaire is completely optional, but answers will help DecodeME 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 allow those completing a paper copy extra time, DecodeME will send the paper copies out in December and they should be posted back to to the address provided by 15 February 2024. 
  • Invitations to complete the second questionnaire online will be send to all other participants at the beginning of January – 29 February 2024 at 5pm being the deadline to complete the online version of the second questionnaire

The team behing DecodeME intimate their excitement regarding the data to come from the second questionnaire as it means they can harness even more power from this significant research project to aid greater understanding of ME/CFS. The questionnaire data collected from everyone is incredibly useful as the more they learn more about the genetics of ME/CFS, the more insight it may give as to how this impacts symptoms, severity and more. But DecodeME is not only about understanding the genetics potentially involved in ME/CFS but also individual’s lived experience. Genetics and data from the questionnaire responses, will form the largest data set on ME/CFS in the world and will provide a foundation for further research.

Summary –

  • First questionnare paper copy participants – new questionnaire will be sent out in post this month (December) and asked to be completed and returned by post to DecodeME by 15 February 2024. 
  • For those who particpated in the first questionnare online (irrespective of whether selected for a dna test) email invitations for this second questionnaire will be sent out around the beginning of January 2024 and asked to be completed and returned by 5pm 29 February 2024.

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

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