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

I think those involved in "established rehabilitation practice" are afraid that outside experts like Edwards will look at the evidence in their field critically.

They seem to demand that trials of "complex interventions" are evaluated differently and this exceptionalism seems hard to justify.

 

They make it sound as if someone's actually made some progress in 'managing' fatigue in other conditions, instead of it being one of the most intractable symptoms faced by patients with a whole list of illnesses. None of them are going to be happy if said 'management' consists mainly of attempts to manipulate them into thinking they don't really have fatigue.

 

One of the things that strikes me about the diatribes against @Jonathan Edwards is that they seem to forget that JE has much experience as a clinician & not just as a researcher & so has just as much of an understanding about a therapeutic relationship with patients as they do.

Another thing that strikes me about all the whinging about not holding all research to the same standards and the issues of a combination of lack of blinding with subjective outcomes- even if it weren't possible to avoid this then simply by following up with clinic patients in the long term you could have gathered evidence that supports the research.

We know BPS folk read the forum and have done for years, we know they see our critiques and would have seen that the lack of evidence would be an issue. They have had years to go gather the data and prove their treatments work. The only reason I can see they didn't do this is because the data they might gather would prove them wrong.

 

I think as much as they are afraid they are also furious and incredulous that someone would have the temerity to question their empire. I honestly think a lot of them cannot conceive of any valid criticisms because they are so far gone on their own theories.

 

Quite simply, they have no scientific foundation to their claims, and instead strive to dress up their misplaced beliefs as 'evidence'. They really cannot cope now their ivory tower is crumbling about them.

 

Blinkered, undiluted arrogance is what it stems from I think. "Why am I right? ... Because I am right of course!"

 

They want parity of esteem without having to meet the same quality standards.

 

I didn't have particularly high expectations, but the comments from the Royal Colleges are worse than I expected. So many errors, so much misrepresentation, failure to understand basic concepts, baseless assertions. I'm having trouble coming to terms with the fact that some of these people actually seem to be a little bit dumb

 

Just to remind ourselves how dumb some seem to be:

So, children, why do we blind trials?
Because the outcomes might be biased by subjectivity, Sir.
Well done children. So which trials specifically need blinding.
Trials with subjective outcomes, Sir.
Very good!

Shall we just go over that again, for Josh and Mary?
Yes, Sir, please Sir

So, children...

 

I wasn't expecting much either, but it was their sheer lack of knowledge or insight about ME, despite years of experience of treating patients, that surprised me.

 

I just blogged about the stakeholder submissions here, specifically focused on the Royal College defending the Lightning Process:

https://thesciencebit.net/2021/10/3...tic-processing-as-legit-treatment-for-me-cfs/

 

As always a great piece of writing.

 

I guess having learned how to exploit patients to the detriment of a patients health and advantage of their own careers based largely on a strategy of leveraging collective societal and medical ignorance of such patients biological and political status, they all just felt it was safest not to afford anyone too much access to factual information. Least of all themselves.

Edit:mashed up 1st quote.

 

Many thanks for that @Trish

 

Quite possibly my favourite piece yet. Though they're all so good it's difficult to choose!

Thank you.

 

When Prof Crawley published her Lightening Process study, I genuinely believed that this would be a major step forward in getting people to recognise the failings of the widespread use of subjective outcomes in unblinded trials, that such an obviously flawed study would be the reductio ad absurdum of PACE and associated studies.

At that point it never occurred to me that we would see the reverse and that the medical Royal Colleges would collectively seek to defend the indefensible, not because they believed in the Lightening Process but because they can not admit the principle that the purpose of medical research is to achieve objective answers rather than support their own biases.

 

Brilliant, thank you!

 

Honestly I think there's a good case to make that neurology is far deeper into woo than psychiatry. Which is saying a lot since most psychiatric concepts are very vague and filled with woo.

Freud was a neurologist. 150+ years later and he has completely fried the brains of the entire specialty. Impressive, just not in a good way.