Involving people with ME/CFS in every stage of our study is a crucial part of DecodeME. Professor Chris Ponting, the study’s Principal Investigator, talks about the value of involving people with lived experience in the study on the Genetics Podcast.
Read the transcript. (With thanks to Sly Saint from the Science for ME forums).
Quote: It's just been, eye-opening what the scientific value of the patient, the person with ME their experience is. Because they are clearly the expert, but not just the expert in their own experience, but often the experts scientifically as, as Andy is because it's their world, they have lived in it. They've explored it. They've understood it far better than I have over the few years that I've been involved with.
Also featuring on the podcast are Andy Devereux-Cooke, co-founder of the Science for ME forum, and Sonya Chowdhury, Chief Executive of Action for M.E. Both are co-investigators (PPI) on the Management Group and have lived experience of M.E. Andy has lived with M.E. for 40 years, and Sonya’s youngest son was diagnosed with the disease.

DecodeME will launch in the new year. Register your interest now.