Conducting and facilitating research into patients' experiences of ME and CFS is the PRIME project's central concern.
Aspects of ME/CFS are under-researched. Very little is understood about the experiences and concerns of people living with these conditions, what causes them and how best to treat them.
Our strategy for approaching this problem is to bring patients and researchers together in a forum where they can work together to gain a better understanding.
We have conducted two main types of research within this project:
The PROMs work will identify outcome measures which are used in ME/CFS
We are now completing a review of Patient-Reported Outcome Measures (PROMs).
The literature survey and interviews both focus on the perspectives of individuals living with ME/CFS. We have assembled a comprehensive and wide-ranging patient experience database, reporting the perspectives of those living with ME/CFS and what they see as the important research topics to focus on.
This work was supplemented by a series of Research Workshops where patients, carers and researchers worked together to focus on the agenda for future ME/CFS research, and what outcomes are used in research.
If you want to get involved in the PRIME Project, contact us here.