I agree with previous members - surely one of the most important constituencies for such a review to be contacting? just like for a commercial company it would be the loyal customers that should need their product who they'd lost in the last x years.
I can sort of understand the issue with 'anyone with me/cfs in the UK' and how that could be checked on and the potential (although maybe unlikely!) of large numbers of not ill people overwhelming it. Even though I agree very much with the sentiment that lots of those ill and who it should serve haven't quite joined because of this. But how that is done? I'm interested to hear more from anyone who has experience of these reviews, like @Utsikt , to hear what tools or ways of covering this sort of things might be open to them?