Updated: Feb 4
I was perplexed and concerned to see the publication of the NICE guidelines on ME/CFS. They are in my view flawed as they don't take into account input from recovered patients.
I and many others voiced their concern about the the draft guidance produced in August of this year. Concerns have been ignored, including those from NHS service providers and professional bodies such as the Royal College of Gps. (1)
It is good to see the voices of people with ME heard. However the voices and strategies used by people who have recovered haven't been listened to. This guidance may add to the burden of those who are at the moment struggling with fatigue and other symptoms of postviral states like glandular fever and other fatigue states for whom recovery is a realistic expectation. #ME #lightningrocess #postviralfatigue #longcovid
Thankfully people do recover. This is the recovery story of Victoria who trained with me in Lightning Process in Leeds.