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.
 
Michiel Tack said:
Similarly, the letter from the royal college of psychiatrists (obtained by a FOI) stated:

"publishing the guidance in its current form has the potential to undermine the treatment approach to managing fatigue in all neurological conditions and also long COVID"
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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.
 
Michiel Tack said:
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.
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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.
 
Invisible Woman said:
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.
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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.
 
SallyC said:
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.
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Blinkered, undiluted arrogance is what it stems from I think. "Why am I right? ... Because I am right of course!"
 
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:

Michiel Tack said:
"unblinded trials with subjective outcomes are specifically considered unreliable.”
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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...
 
The Royal college of physicians responded: "unblinded trials with subjective outcomes are specifically considered unreliable.” If NICE as an organisation were to generalise this opinion across all guidelines for example those for back pain, osteoarthritis and multiple sclerosis, what would the impact of this opinion be on these other guidelines?"

"publishing the guidance in its current form has the potential to undermine the treatment approach to managing fatigue in all neurological conditions and also long COVID"
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Translation: Oh no, they are on to us. :nailbiting:
strategist said:
They want parity of esteem without having to meet the same quality standards.
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Exactly.

They are being asked only to meet the same minimum technical and ethical standards as the rest of medicine and science are required to do.

They are being singled out for hard technical and ethical criticism only because they persistently refuse to do so.

They have only two options: Lift their standards, or resign.
 
Michiel Tack said:
There were others that defended The Lightning Process including the Royal College of General Practitioners
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Kitty said:
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.
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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.
 
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Brian Hughes said:
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/
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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.
 
Woolie said:
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.
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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.
 
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