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Priority Setting Partnership

M.E./CFS Priority Setting Partnership

The M.E./CFS Priority Setting Partnership (PSP) identifies important but, as yet, unanswered research questions and prioritises them. This is not done by researchers seeking funding but by asking those with lived experience, carers and clinicians working in the field.

It is led by an independent group of people with M.E./CFS, carers and clinicians, and facilitated by non-profit making initiative, the James Lind Alliance (JLA). Our Chief Executive, Sonya Chowdhury, is the PSP Lead, and therefore accountable and responsible for the funding for the project which comes from the National Institute for Health Research, the Medical Research Council and the Scottish Chief Scientist’s Office.

Using an approach tried and tested with a range of other illnesses, including MS and fibromyalgia., the project will:

  • bring patients, carers and clinicians together to identify research uncertainties in the field of M.E./CFS
  • agree by consensus a prioritised Top Ten list of those uncertainties for research
  • publicise the methods and results of the exercise
  • publicise and disseminate the results to research funders, independently of the JLA.

We have already asked people with M.E./CFS, carers and healthcare professionals to tell us the questions that they think research should answer. Around 1,450 people submitted over 5,300 questions or statements in response to our first survey. About 3,700 of these were questions that could be answered by research. We have been working with this information to sort them into themes, see whether any of the questions have been answered by high quality research already, and develop a "long list" of questions

From October to December 2021, we will ask you to look at the long list of questions and prioritise them. Which questions do you think are most important?

The long list survey is now available on the PSP website. The survey can be saved if you need to take a break while filling it in or want to spread it over a few days. Similarly, a PDF of the long list of questions can be downloaded, allowing you to take your time to review it away from the computer screen.

  • If you would prefer a paper copy of the survey, please call us on 0117 927 9551.
  • If you would prefer to complete the survey over the phone, please call Helen at The 25% ME Group on 07392 403591

Once this survey has closed, a workshop will be held in February 2022, with representatives of people with M.E., carers and clinicians; and the final Top Ten list will be agreed.

All the questions submitted, including those that don’t make the Top Ten and those that were considered out of the scope of this study will be published on the website alongside the final reports from the project.

The Top Ten will be widely published and promoted to research funders and researchers. We also plan to use the PSP to raise awareness among those responsible for policy and strategy to inform conversations about what questions matter most to people with M.E./CFS, their families and carers and the clinicians working alongside them.

Find out more and get involved in the project on its dedicated www.psp-me.co.uk website, which has lots of free, downloadable resources to help you share the project with others, and follow updates on Twitter @PSPforMECFS