By Simon McGrath in ME/CFS Research Review.
Publicly funded research aims to benefit patients and the best way to make sure it does is for researchers and funders to partner with patients. This will ensure research prioritises what matters to patients. It will lead to more effective research. And it will help ensure that research delivers benefits for patients rather than simply “success” for researchers. Two studies underway showcase this approach, which should become the “new normal”.
Why do charities and (via the Government) taxpayers fund medical research? Simple: to deliver real benefits for sick people. Since it’s all about benefitting patients, the current practice of shutting them out of the research process makes no sense.
We still don’t know what causes ME/CFS and have no effective treatments for it. We need a better approach to research and we need patients to be at the heart of things.
Researchers, funders and patients should now come together and work in partnership. There are three reasons why this approach should lead to faster research progress.
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