NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

Professor Edwards was at the round table, why didn't they make these comments to his face?

I hope the expert testimony becomes the tread that unravels the whole CBT system. I'm very thankful for the testimony and all you've done for the ME community.

My favorite part of the Consultation Comments and Responses is the denial, "we do not accept this". I would love to yell at the psychiatrists, "physician heal thyself".

 

I have given up counting the number of times NICE's response to stakeholder comments is along the lines of, 'That is factually incorrect'...

 

They were remarkably patient. If my brothers kids whine for that long they get to sit on the stairs for a couple of minutes until they can behave.

 

Association of British Neurologists :

NICE:

ABN:

NICE [bolding mine]:

I'm not that far through the stakeholder comment tables, but it appears there may be a number of NICE comments that would be worth saving and using for advocacy purposes, as well as to ensure the guidelines are properly implemented.

 

This is genuinely "let them eat cake" level of being detached from reality. Sounds exactly like a millionaire complaining of having to look at homeless people and how it ruins their day. Holy narcissism, Batman. What is it doing taking up so much place in medicine, of all places?

 

So am I.,,, or correctly I was, until life and age got in the way, I used to be called 'carrot top' as a child!

 

I think that might be the very thing they are frightened may now come to pass. Together with a wider public understanding of why.

 

More and more, I wish that meeting had been recorded.

 

The reason NICE gave for not recording it was to allow all the attendees to 'speak freely'. So the four RC attendees who signed the letter in the BMJ (not sure where else it was published) had absolutely no excuse for not raising their concerns at the roundtable meeting.

Edit: NICE did that for them and invited Dame Carol Black to chair the meeting, someone they cannot say would be unsympathetic to a biopsychosocial approach.

 

OMG the Association for British Neurologists are so steeped in the BPS culture, this doc is gripping and essential reading!

Long, long diatribes about the "evidence". Replete with long lists of references to work of BPS believers, including Hotopf and of course all the usual British BPS suspects. Who wrote this? It can't be an unbiased outsider, it must be someone deeply entrenched in the BPS culture.

Lots of reliance on "there's no evidence for XXX ". Which is always a defence for maintaining current consensus - for which no evidence exists.

 

Yes that is because Prof. Edwards understands what words mean. A placebo is a substance or procedure that is designed to have no therapeutic benefit. By definition it has no biological effect. These people are morons.

I'm under a year and I think I'm here.

Perfect. And — again — thank you @Jonathan Edwards

+1

 

This is a wily trick, @SNT Gatchaman. With the advent of fMRI, there are a whole new host of ways you can claim something has a "biological" effect when really it doesn't, not in the usual sense of the word.

For example, did you know that six weeks of mindfulness training can change your grey matter?
https://www.sciencedirect.com/science/article/pii/S092549271000288X

Of course, if we didn't change biologically with each experience, we'd have no memory of it afterwards! But now there are whole new ways people can bullshit about the "biological" benefits of their favourite form of woo.

 

My money ' s on Stone.
Disciple and currently empire building with FND

 

Lol and of course whenever anyone mentions "biological effects demonstrated by fMRI" it is traditional to reply with the words "dead salmon".