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! So please help us spread the word about the study. Visit our Ways to Share page for shareable content and more information. 


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. 

Pie Chart: Sign ups throughout the UK. Greater London 8.8%, Scotland 12.6%, Wales 4.1%, N Ireland 1.3%, NW England 11.7%, NE England 7.9%, West Midlands 6.1%, East Midlands 8%, East anglia 11%, SW England 15.3%, SE England 13.2% Pie Chart: Sign-Ups Age Distribution. 16-24 5.8%, 25-34 15%, 35-44 21%, 45-54, 23.4%,55-64 20.1%,65+ 14.7% Pie chart: ME/CFS Severity Reported by Participants So Far. Severe Mild 32.9%, Moderate 54%, Severe 12.4%, Very Severe 0.7%