UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Thank you all for your extremely hard work to produce such depth of information at this pivotal point for people with ME.

 

didn't seem to be a problem for EC at her Tedx talk.

talking of which. re GET; from MAGENTA feasability protocol review:

"Please justify the use of 10-20% progression for use with children/adolescents with CFS."
"Lines 4 and 29-30: A progression of 10-20% per week in physical activity is regarded as standard for healthy adults. Other CFS research suggests that progression for CFS patients should be a lot less or at least self-paced with periods of no progression if symptomatic. Can the authors explain why the 10-20% progression was chosen and support this with references from CFS literature?"

response
"Thank you. We have clarified that this is following UK guidance. A progression of up to 20% is the guidance provided by the National Institute of Clinical Excellence1 and is standard practice in the UK. This is also consistent with the PACE trial, the largest trial done to date. We have now included a reference to NICE guidelines and the PACE trial, the protocol now reads: “The intervention will encourage children and adolescents to find a baseline level of exercise which will be increased slowly (by 10-20% a week, as per NICE guidance1 and the PACE trial2)”.

 

A very big thank you to all who are getting their heads around the current press of information.

I must admit it is taking me time to assimilate what is been published from various sources and I apologise if my contributions are non sequiturs or irrelevances. Hopefully I will catch up in time.

 

https://twitter.com/user/status/1454723427789647872



Quite a few comments under these posts by Phil Hammond.

 

Including this one!

https://twitter.com/user/status/1454733081395482624

 

https://www.youtube.com/watch?v=Cj-JjqrOs6M

Faith-healer Dr Phil Parker is not happy about NICE's decision to recommend against the Lightning Process.

 

Faith-healer Dr Phil Parker can go boil his own head and step inside his own body.
(With apologies for unscientific response.)

 

I have complete faith in his ability to come up with something even more unhinged/unethical/etc, so I'm not too worried about him.

 

I mean he works privately so I expect this might not affect him that much. If people are willing to consider the LP, a change in the NICE guideline probably won't be a dealbreaker.

 

But he also sells training courses and licensing of therapists to use the LP name. If there is reduced demand for LP with fewer therapists undergoing his training courses that will dent his profits.

 

Yes, his income is likely nearly all from his 'ecosystem', but the LP claims to treat all sorts of conditions—essentially anything that is unexplained by conventional medicine.

 

I guess Phil will spend the weekend "dûing" sour grapes.

https://duing.org/index.php/how-do-you-use-du/

 

And he's already chasing LongCovid patients.

 

maybe someone could ask him about the MAGENTA protocol or do they only do it that way in their trials, not in clinic?

https://www.s4me.info/threads/uk-ni...lication-discussion.22996/page-19#post-387301

 

And yet no evidence for PMA or body stepping aiding treatment for these conditions either.

All the while more of his victims and potential victims will hear about this absence of evidence through our deliverance from evil.

 

All we have really heard from any of these people is:
'My patch needs to be bigger - and don't you dare step on it'.
Rehab, psych, LP, GP, ...

 

Can you get patches to stop their addictions?

 

Why not give patients a portable annual budget to spend wherever they want for support or care, pending evidence base for interventions that work.

 

Unfortunately different people have different needs at different times and unpredictable co morbidities.