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Table 1 Key principles of Co-production in the DecodeME study

From: DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome

Principle Example in DecodeME
Sharing of power Parity among members of the project’s Management Group: a person with ME/CFS, a charity CEO and a scientist
Including all perspectives and skills PPI representatives equally contribute to every team meeting and decisions. Managing the pace of the study to ensure that all team members can contribute fully
Respecting and valuing the knowledge of all those working together on the research Postponement of a submission to a research ethics committee when it became evident that documents written by scientists could be improved substantially by people with ME taking advantage of their lived experience
Reciprocity Documents and messages open to all project partners
Building and maintaining relationships People with ME/CFS lay at the heart of DecodeME’s inception, planning and launch