"The national patient organisation I didn’t mention by name above is the ME Association. I would like to make plain that I have a great deal of respect for their work and that of their Medical Advisor Dr Charles Shepherd, who much of the time do a very good job of representing our interests. An example of this work is their recent petition to NICE regarding the decision not update the guidelines on ME/CFS (do consider signing if you haven’t already – this is important). However, MEA’s decision to stay in the CMRC and continue to work with those who malign patients and whose research contributes further misinformation about ME seems to me – and to many other patients – to be a serious error of judgement. They really should listen to the voice of informed patients."
https://spoonseeker.com/2017/07/18/hillsborough-law-shifting-the-balance-in-favour-of-truth/
https://spoonseeker.com/2017/07/18/hillsborough-law-shifting-the-balance-in-favour-of-truth/