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

Have people applied and been turned down?

 

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?

 

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.

 

Helen Dawes was also involved in this: https://www.meassociation.org.uk/20...urvey-on-cbt-and-get-in-me-cfs-03-april-2019/

tbh, I'm going to be a bit concerned about anything involving RCP (or AfME).

 

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.

 

I'd just like to state now that, as tempting as it might be in some cases, I have never tased anyone ever....

 

Why do you keep holding your arm up like that then?

 

Because I have to show my minions who they should tase

 

Soon in a Reuters article: "Professor Sharpe says the anti-science activists made plans to tase him."