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Two weeks to send in your research ideas

June 22, 2021

Woman with severe ME looks exhausted, laying down with head on pillowA major project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your responses must be in by Monday 5 July 2021.

Find out more and add your ideas now: psp-me.co.uk/take-part

Who are they?

The ME/CFS Priority Setting Partnership is run by a steering group of people with ME, carers and clinicians. The project is funded by some of the largest research funders in the UK – the National Institute for Health Research, the Medical Research Council and the Scottish Chief Scientist Office. The process has been carried out over 100 times in other disease areas, resulting in new research findings, treatments and improved quality of life.

So what do I have to do?

The short survey asks you what questions you think research should answer about M.E./CFS. You can write as little or as much as you like. They want you to think about your experience of M.E./CFS. If we could answer any questions, which ones would have the most impact on your M.E./CFS, or your ability to care for or support those with M.E./CFS?

Claire Dransfield, Research Officer and Coordinator of the M.E./CFS Priority Setting Partnership, urges everyone to get involved:

“Your ideas matter, your experience matters, your priorities matter. This project is a powerful example of the importance of putting people affected at the heart of decision making, and has already enabled over 850 people to have their say. But we want to reach 1000, so take part before the 5 July deadline!”

This project is aiming to kickstart a new era of research into ME/CFS. An era that puts the priorities of those most affected by this disease first. It’s taking place at the same time as another separate project: DecodeME, the largest ever DNA study of ME/CFS, and both are modelling excellence in patient and public involvement.