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Help shape the future research priorities for M.E./CFS

June 11, 2020

There is a fantastic opportunity for people to join a steering group to support an exciting project which will put people with M.E. at the forefront of future research into the debilitating condition. The search for steering group members originally launched earlier this year but a second round has is now taking place to ensure those who may have been unable to apply because of pressures around Covid-19 are able to take the time to find out more.

We have joined forces with the James Lind Alliance (JLA) to bring patients, carers and health professionals together to come up with the top 10 unanswered questions people with M.E. feel are the most important to them and others with the condition. These questions will inform medical researchers which will ensure the best use is made of future research funding.

This collaboration will be known as a Priority Setting Partnership (PSP) and will be spearheaded by a steering group of around 12 people who have been affected by the condition, whether it be someone with M.E., a health professional with a particular interest in M.E. or a carer who is aware of how the condition affects lives.

The steering group will oversee the 18-month project from start to finish. Thousands of questionnaires will be sent out to seek those burning questions before responses are analysed and carefully whittled down. A further survey will ensure only the most popular and pertinent questions remain before culminating in a one-day workshop where the 10 most important questions are decided.

Steering group members will need to commit to:

  • Meeting online every four to six weeks on average, between now and July/August 2021
  • Attend a couple of online workshops
  • Prepare for meetings in advance, including reading documents
  • Listening to others, being respectful and be able to include different perspectives

Recruitment opens today and will run until 5pm on Monday 20 July. Applicants will need to submit an application form before appointments take place at the end of July or early August.

To find out more and access the application pack click here.