Research into ME/CFS receives significantly less funding than diseases that cause a similar burden. Furthermore, people with ME/CFS have among the lowest quality of life when compared to other common diseases such as multiple sclerosis, rheumatoid arthritis, stroke and various cancers.

This priority setting process has the chance to finally put the views of people with ME/CFS, their carers and clinicians at the fore. At a time when increasing numbers of people are being diagnosed with ME/CFS post-Covid-19, it is vital that work to boost research funding in this area reaches as many people as possible. This priority setting process will do that, and ensure future funding is funnelled into research that will have the biggest positive impact.

The PSP is funded by the National Institute for Health Research, Scottish Government Chief Scientist Office and the Medical Research Council.  It is facilitated by the James Lind Alliance. For more information about this partnership, or to complete the survey head to www.psp-me.co.uk. 

Sian Leary, an advocate with #MEAction UK and member of the Priority Setting Partnership steering group tells us: “For too long ME/CFS research in this country has focused on the interests of a small number of academics, ignoring the priorities of people with lived experience. This process can be another large step towards changing that, and building the robust, innovative and objective research landscape that we all want to see.”

Debbie Smith, committee member of the Science for ME forum, says: “This is an opportunity for those directly affected by ME, namely patients, carers, families and friends, to have their voices heard and to direct how research funds are spent.”