Patient and public involvement (PPI) has been central to the development of the study, via our PPI Steering Group. You can find out who the PPI Steering Group members are on the About Us page on this website. We also have PPI members in other delivery teams in the project who provide deep insight and lived experience of ME/CFS.

We have also incorporated feedback and ideas from the wider community into the study design. Some examples:

  • PPI SG consulted the ME community on the criteria for inclusion in the study and decided to use the Canadian Consensus or Institute of Medicine and not Fukuda criteria as a result.
  • PPI recognised the need for a paper-based questionnaire, as well as an online one, for people wanting to participate.
  • PPI helped to rewrite the study questionnaire and had extensive involvement in the DecodeME questionnaire
  • DecodeME has used the expertise of people with ME/CFS to develop our marketing strategy and budget.

To find out more about how patient and public involvement has impacted the study, you can read this blog post.

Watch our webinars to find out more

A partnership between

Action for ME logo
Forward ME Logo
UKRI MRC Human Genetics Unit logo
National Institute for health research