UK ME/CFS Priority Setting Partnership launches first survey

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A survey has been launched by the ME/CFS Priority Setting Partnership (PSP) seeking to identify the top 10 research priorities of people with ME/CFS, their carers and clinicians in the UK.  The partnership is led by people with ME/CFS, their carers and health professionals. With your input, this process could change the research agenda for ME/CFS. 

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.”

The survey

The survey asks what questions people with ME/CFS, there carers and clinicians want research to answer, no matter how big or small. Some examples of areas you may have questions about include:

  • Understanding ME/CFS
  • Living with ME/CFS
  • Treatment or management of ME/CFS

The survey is open until Monday 5 July at 5pm. If you can’t participate online and would like a paper copy of this survey please contact [email protected] or call 0117 927 9551.

The Priority Setting Partnership has also partnered with the 25% ME Group to support those with severe ME/CFS who need additional help and would like to complete the survey over the phone or by text. If you would like to do this you can call or text them directly on 07392403591.

Spread the word

Want to do more to help make an impact?

The partnership have provided a series of resources to help you spread the word. They make it easy for you to do everything from tweeting about it, to writing a letter to the editor of your local newspaper. Click below to get started!

And remember to use the hashtag #PrioritiseME!

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