This is a fantastic opportunity for you to join a steering group to support an exciting project that could put people with Myalgic Encephalomyelitis (M.E.) at the forefront of future research into this debilitating condition.
The James Lind Alliance (JLA) Priority Setting Partnership brings together clinical and lay experts to identify, through public consultation, those areas of research that remain unanswered and are believed to be of most importance.
Once this list of priorities is published, it will help bring a focus to M.E. that this disease has not had before, a focus that has benefited other fields to the tune of many millions of pounds in additional research investment.
Being part of the Alliance has also helped raise the profile of diseases like Autism and Multiple Sclerosis and bring much-needed attention from researchers in the UK and from overseas.
A second round of recruitment for the M.E. Steering Group is now taking place to ensure those who might have been unable to apply because of the Covid-19 lockdown are able to do so now.
“I believe the PSP represents a fantastic opportunity to promote the need for M.E. research and to attract significant funding to a neglected field.”Russell Fleming, Forward ME, ME Association.
“This is an opportunity for those directly affected by M.E., namely patients, carers, families and friends, to have their voices heard and to direct how research funds are spent”Debbie Smith, Science 4ME Forum
“For many years patients and carers have been seeking to have their voices heard when it comes to the direction of research into M.E.
“A way for the priorities of patients and carers, alongside those of interested clinicians, to be justly balanced and formalised is long overdue. The PSP process provides an exciting opportunity for this to happen.
“We urge all people with M.E. to get involved in the PSP process and play their part in determining the future of M.E. research.
“The priorities identified in PSPs for other diseases have led to significant funding of relevant scientific research; this is our hope for M.E.”The Patient Advisory Group to the UK CFS/ME Research Collaborative (CMRC)
The JLA Steering Group will bring patients, carers, and health professionals together to discern the top 10 unanswered research questions that people with M.E. feel are the most important.
It will comprise 12 people who have been affected by the condition, whether they be people diagnosed with M.E., carers of someone who is affected, or health professionals with a particular interest in the disease.
It will oversee an 18-month project from start to finish. Thousands of questionnaires will be sent out to members of the M.E. community before responses are analysed and carefully whittled down.
A final public survey will ensure only the most popular and pertinent questions remain before work culminates in a one-day workshop where the 10 most important questions will be decided and then published.
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 is open now 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, please click here.
The ME Association
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We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
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