I don't know if this matters, but I thought I'd mention that NICE have tried to use concern about online 'abuse' to avoid releasing some important information.
I don't think that criticism of someone in a position of medical authority who makes claims unsupported by the evidence should be seen as abuse... but who knows what's acceptable according to the values of the UK Establishment. Personally, I reckon it's worth being a bit cautious and thinking more than normal about the possible costs/benefits of what one posts.
Also, while I thought that there were some problems with the patient representative's submission, and there's no need to pretend it was perfect, I'll try to be kindly on their role - they were in such a difficult position, and don't have the advantages of the sort of support provided to those working in academia, and in doesn't look like NICE provided assistance to help them express their concerns in a way that would be most effective. If I was them, I know that I'd have felt under a lot of pressure to try to make things better for other patients, while being in a very difficult spot with NICE. It's really not fair that patients are having to do so much to try to clean up the mess made by shoddy researchers!
