NICE Clinical Knowledge Summary (CKS) on ME/CFS, July 2025

[Jonathan Edwards]

This completely misses the point. He should be able to acknowledge that the recommendation is inappropriate even though it was deemed a necessary compromise.

So in fact he admits the answer is no, but we had to compromise.

It reminds me that I was not allowed to be on the committee because I did not actually treat people with ME/CFS and therefore had no conflict of interest!

 

[Nightsong]

I think it would be worth an attempt to try to have the CKS improved. NICE clearly made an effort to create a balance with the composition of the the ME/CFS guideline committee membership, and the result was essentially a compromise between the psychobehaviouralists and those on the committee who had a more sensible view of things.

While the CKS isn't truly dire, it's bad enough. It's issued in the name of NICE, and so it will inevitably be treated by clinicians as a summary of their guideline - upsetting the careful balance that they tried to create, and tilting the field towards BACME's view of things. Given the extensive controversy over the guideline I'm surprised they didn't insist on a proper consultation for the CKS.

I wish I could say I was surprised that the MEA endorsed it.

 

[Utsikt]

It reminds me that I was not allowed to be on the committee because I did not actually treat people with ME/CFS and therefore had no conflict of interest

Reminds me of the ethical committee in Norway that turned down complaints on Wyller’s MINIRICO because the patient that complained wasn’t part of a patient organisation so they weren’t an affected party.

 

[rvallee]

Something else I find hard to understand is why these CKS summaries are going out under the NICE name & branding, yet are being produced by a private company with apparently no opportunities for patient or public involvement. It seems to make a mockery of the NICE guideline procedure if unevidenced recommendations can simply be placed in a "summary" version (which most clinicians will assume is faithful to the guidelines themselves). Why on earth did they not just summarise the actual guideline - why turn to BACME's material?

You know the motto: everything about us, in secret, behind closed doors.

 

[bobbler]

Note there is a fb MEA comment from Charles 5hrs ago:

"Thank you to everyone who has been making constructive comments and criticisms about this new CKS for ME/CFS. I will be sending a summary to NICE - along with MEA comments once I have had time to have a second and very thorough read of the CKS. Dr CS MEA"


So it looks like he is planning to do something - I just have recently become wary of their use of the term 'constructive' to use as some fake caveat excusing censoring that seem to develop around the time RIley went off the rails.

However it is intended, it’s worth flagging how this phrase was used a lot then to mean certain things just so they are aware? .