ME Research UK blog post: James Lind – ME/CFS Priority Setting Partnership, 19 April 2021

Priority Setting Partnerships (PSPs) enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research. To harness the opportunities offered by this process a ME/CFS PSP has been established.

One aspect of the process is to gather the views of people with ME (including those with severe ME), carers and clinicians by means of ME/CFS PSP surveys. The surveys will be shared as widely as possible throughout the ME/CFS community, working with interested organisations and local support groups to reach as many people as possible.

How to help

• Take part in the survey. The survey is open until Monday 5 July 2021 and has two sections. The first allows submission of questions and ideas; and the second has tick boxes to allow collection of information about you. If you would like a paper copy, please email the project questions@psp-me.co.uk or call 0117 927 9551. For help completing the survey by phone or text, please call The 25% M.E. Group charity on 07392 403591.
• The ME/CFS PSP will be more effective if it is shared widely to enable it to reach more people and so discover the most important priorities of people with ME/CFS, their carers and clinicians.
  PSP Process and Information

According to the James Lind Alliance (JLA) it facilitates PSPs which:

• bring patient, carer and clinician groups together on an equal footing
  identify evidence uncertainties (questions which cannot be answered by existing research) which are important to all groups
• work with all groups to jointly prioritise identified uncertainties
• produce a final list (often a Top 10) of jointly agreed research priorities, publicise them widely, and make sure that other uncertainties are recorded and available for researchers and research funders to access
• provide a rare and valuable opportunity for patients and clinicians to shape the health research agenda.
• The JLA PSP process results in a Top 10. The aim of the Top 10 is to highlight important areas for research, but not necessarily to come up with the specific research questions. The Top 10 may include broader areas of importance where patients, carers and health professionals have agreed that there is a need for research. This informs researchers and research funders about priorities so that they can make their research as meaningful as possible to the people who need it.

The ME/CFS Priority Setting Partnership is run by a steering group that supports and represents many different organisations involved in ME/CFS advocacy, care and research. The Steering Group comprises representatives from the Science for ME forum, the Forward-ME Group (of which ME Research UK is a member), a representative from the CMRC Patient Advisory Group, and the PSPs lead – Sonya Chowdhury from Action for ME.