UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

Esther12 said:
The way they've acted so far means that patient groups are (rightly) going to be wary of doing anything that could be seen as legitimising NICE's work. Maybe that's part of the problem?
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That's one way of looking at it, but consider the other: if charities don't submit, then who will get the tender? Would that work out better or worse for the charities and the people they represent in the long run?
 
We are pleased to announce that Action for M.E. will be working with Oxford Brookes University to gather the experiences of children and young people with M.E. to develop a new guideline for M.E./CFS.

Earlier this year, the National Guideline Centre, which has been commissioned by the National Institute for Clinical Excellence (NICE) to develop the guideline, invited stakeholders to submit proposals to run a focus group for children and young people with M.E./CFS. Their experiences will be used to inform the current ongoing review of the NICE guideline.

Working in collaboration with Action for M.E., Professor Helen Dawes and her team at Oxford Brookes submitted a successful proposal to carry out this piece of work.
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Is there any concern that the main researcher behind this is a rehabilitation specialist? Or the royal college of physicians are funding this?

There was much discussion on AFME Facebook about the practicality of this for the severe. Lots of wonderful parents determined their child’s voices should be heard. AFME said there would be due accommodation but it would be nice if for once, how the severe could be accommodated was just made clear in the initial material provided, rather than seemingly left out by default.
 
It dos seem crazy that a physiotherapist should be in charge of such a survey since the current mess seems to be largely due to the fact that physiotherapists and psychotherapists do not appear to be able to understand how to gather reliable evidence.

On the other hand it makes it harder for anyone to reject the findings on the grounds that they are biased by patient activists.
 
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