ME/CFS services in the United Kingdom

[MrMagoo]

Yet again the NHS is unleashing untested, unscientific “treatments” which most closely resemble the discredited “PACE” trial specifically pointed out as harmful in NG206 NICE guidance 2021.

 

[Sean]

they think it is those other therapists who are doing it wrong never them, as they "don't do GET" and somehow failing to see that adaptive pacing upwards is the same thing.

They are not failing to see it, they are refusing to see it.

There is no excuse left whatsoever for these clowns. The evidence is overwhelming. They are completely wrong, and have been since day one. The fundamental problems with their 'science' and the claims based on it, and the harms resulting from it, have been comprehensively exposed, and they still cannot admit it and change paths.

The real question now is how are they able to keep getting away with it? Why are they and their claims so protected? What is it about what these people are offering that is so special and important that it cannot be allowed to fail, no matter how obvious and costly and cruel that failure and the denial and coverup are?

 

[MrMagoo]

They are not failing to see it, they are refusing to see it.

There is no excuse left whatsoever for these clowns. The evidence is overwhelming. They are completely wrong, and have been since day one. The fundamental problems with their 'science' and the claims based on it, and the harms resulting from it, have been comprehensively exposed, and they still cannot admit it and change paths.

The real question now is how are they able to keep getting away with it? Why are they and their claims so protected? What is it about what these people are offering that is so special and important that it cannot be allowed to fail, no matter how obvious and costly and cruel that failure and the denial and coverup are?

Data.

I had a hopeless interaction with the hospital this week (assisted by my advocate) as to why certain things can’t be considered - doesn’t gather data, can’t send us info on usage or effectiveness so who cares if it’s effective, it cant justify itself to the NHS so it’s not used. So stark.

Although my first thought was, no my first thought was F.F.S. and a close second was “Sarah Tyson really missed the mark then” and my third was “urgh the NHS is obsessed with measuring and justifying stuff”.