JLA PSP: Help Shape the Future of ME/CFS Research

April 20, 2021

Russell Fleming, Content Manager, ME Association

What do you want future research to investigate? Do you have questions about ME/CFS that you wish were answered? The JLA Priority Setting Partnership for ME/CFS has launched its first survey as part of a collaborative venture that could result in more research funding and future studies directed at the issues YOU decide are important.

The first of two public surveys is now open

Please encourage everyone you know to take part. We want to hear from:

  • Anyone aged 16 or older who has been diagnosed with ME/CFS at any time
  • Carers, friends, family, and supporters, including parents of children with ME/CFS
  • Health and care professionals who work with people with ME/CFS
  • Anyone else with an interest in ME/CFS and the future of ME/CFS research.

The survey will close on Monday 05 July 2021. It has two sections. In the first section you can submit your questions and ideas for the future of ME/CFS research. The second section has tick boxes that ask for information about you to help us know that we are reaching a good representative sample.

You can take a break and return to the survey at any time – just be sure to click ‘FINISH LATER’ at the bottom of the survey page.

Help available

If you would like a paper copy, please email the project or phone: 0117 927 9551 and we will send it to you.

For help completing the survey by phone or text, contact The 25% M.E. Group: 07392 403591.

Media Toolkit

The PSP for ME/CFS has lots of great resources to help you spread the word about the survey, including sample tweets, WhatsApp links, images for sharing on social media, a poster to print and templates for writing to your local newspaper and GP.

Please help us to reach as many people as possible who have an interest in ME/CFS and in the future of ME/CFS research.

About the JLA PSP

The JLA PSP has an established track record with other diseases, including Multiple Sclerosis and Fibromyalgia. Funding for the ME/CFS project has come from the National Institutes for Health Research (NIHR), the Scottish Government’s Chief Scientist Office and the Medical Research Council (MRC).

The PSP for ME/CFS is led by a steering group comprised of people with ME/CFS, carers, and clinicians. Forward-ME, which has a membership of national and local charities and groups, is also represented on the steering group, making this a truly collaborative venture.

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