@Skycloud Thanks for putting things into perspective. Of course I am also truly grateful to all those involved in reforming the guidelines as well. I'm slightly nervous that ME/CFS will again be left in the dark. But as you said we do deserve treatments based on good quality, replicated research just like every other condition that NICE produces guidelines for. Does that mean raising further awareness?
Other people are better placed than me to provide balanced perspective, I was just sharing the little bit I’ve learnt about NICE. I worry about being left out in the dark too, I would like my life back!
in my opinion yes we need to raise further awareness, but I think that the most benefit will come from awareness in specific areas. The inadequacy of the guidelines could be a help in a back handed way. The lack of medical and health worker education, and biomedical research and treatments are so obvious, and analysis of BPS research made clear how bad it is. It’s harder to deny our need.