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

I have just posted a bumper edition of this weeks 'News in Brief' spread over 3 posts. In the first 2 posts I have tried to summarise in an orderly fashion all the news so far on publication of the guideline. (supported ably as ever by the rest of the news team who checked all the links and wrote the rest of the week's news).

The posts start here, if anyone is interested in an overview.
https://www.s4me.info/threads/news-in-brief-october-2021.22736/#post-387281
 
chrisb said:
Well, that's what you expect from committee men. No balls.
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Jonathan Edwards said:
Some of them are ladies though.
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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)”.
 
Trish said:
I have just posted a bumper edition of this weeks 'News in Brief' spread over 3 posts. In the first 2 posts I have tried to summarise in an orderly fashion all the news so far on publication of the guideline. (supported ably as ever by the rest of the news team who checked all the links and wrote the rest of the week's news).

The posts start here, if anyone is interested in an overview.
https://www.s4me.info/threads/news-in-brief-october-2021.22736/#post-387281
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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.
 
InitialConditions said:
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.
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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.
 
Dx Revision Watch said:
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.
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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.
 
InitialConditions said:
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.
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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.
 
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