Patient and public involvement (PPI) has been central to the development of the study, via our PPI Steering Group. We also incorporated feedback and ideas from the wider community into the study design. Some examples:
- We consulted 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.
- We gained lots of ideas to help recruit 20,000+ participants.
- We used discussion on the Science for ME forum to inform our plans about recruiting from anywhere in the world, and what impact this might have.
- We recognised the need for a paper-based questionnaire, as well as an online one, for people wanting to participate.
- We’ve used the expertise of people with ME/CFS to develop our marketing strategy and budget.
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The largest ever DNA study of ME/CFS
A partnership between