DecodeME: the largest study into the causes of ME/CFS – Add your voice! 

Published by Simon Lawrence on

DecodeME: the largest study into the causes of ME/CFS – Add your voice! 

DecodeME launched in September 2022, and over 18,000 DNA participants have already taken part, but the study still needs many more people to get involved. Sign up and complete the questionnaire about your symptoms and experience, to share vital information and help us understand more about the disease.

Taking part in DecodeME has two stages, both can be done at home. Some participants may only need to complete the first stage. Others may also be asked to provide a saliva sample, so their DNA can be studied. If so, you will be sent a kit so you can provide your sample and post it back for free. 

The DecodeME questionnaire is shining a light on the ME/CFS community by collecting a wealth of information. This covers many important aspects such as common symptoms, length of illness, severity, simultaneous health conditions, and age. It takes about 15 minutes to complete the questionnaire and when you need a break, you can save and return to your answers later. Alternatively, if you prefer, you can request a paper copy instead by contacting the team. 


The study has been designed in collaboration with scientists, people with ME/CFS and carers.

The strong involvement from the patient community has been vital to making the process as accessible for and representative of the community as possible.


By also studying DNA, DecodeME is providing hope of finding biological causes of ME/CFS. This aims to direct future research and treatment development.


The study has also recently updated its methods so that it is inviting more people to provide a DNA sample. You can read more about this on the blog page of the DecodeME website.


Sign up for the study via the DecodeME website

Or spread the word to help us reach more people by visiting the Ways to share  page. 


Every participant counts


Contact details

0808 196 8664 (Mon-Fri 9am-5pm)

Categories: M.E News


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