DecodeME Questionnaire – Shining a light on the ME/CFS community

The DecodeME questionnaire is creating a large dataset from tens of thousands of people with ME/CFS like you.

It is collecting a wealth of information on important aspects such as common symptoms, length of illness, comorbid health conditions, severity and age to name only a few. 

The information collected from people’s responses is invaluable to understanding more about the lived experiences of ME/CFS and identifying similarities and differences within the patient community.  

This increased understanding can help to inform and direct further research and the development of targeted treatments.  

The more people who complete the questionnaire, the better the study’s results! 

We look forward to sharing the information captured by the questionnaire in the future but for now, here are some statistics on the participants signed up so-far. 

Please note: these figures are only preliminary and will guide our future recruitment efforts in order to represent the ME/CFS patient community as best as we can. 

Sign-ups throughout the UK
Sign-ups age distribution
ME/CFS severity reported by participants

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2022