Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

RECOVER?

 

Trial By Error: Usual Suspects Say NICE Made Eight Errors; Nonsense, Says Committee Member Adam Low

"The usual suspects—several dozen of them—are apparently about to publish a cri de coeur outlining their objections to the ME/CFS guidelines issued in October, 2021, by the UK’s National Institute for Health and Care Excellence (NICE). The upcoming article is expected to appear in the Journal of Neurology, Neurosurgery, and Psychiatry. Not surprisingly, the lead author is our old buddy, Professor Peter White, one of the three main investigators of the now-discredited PACE trial. His PACE co-leads, Professors Michael Sharpe and Trudie Chalder, are also signatories, along with a glittering array of other stars of the biopsychosocial firmament."

https://www.virology.ws/2022/12/29/...rors-nonsense-says-committee-member-adam-low/

I have pointed out on Dave's Facebook post that it should be Lowe , not Low.

 

I particularly enjoyed the interview with @adambeyoncelowe

 

Starting out with usual suspects brings the main point across. They've got a dog in this fight so they are biased, already liking the title. Haven't read the article yet.

*edited to change faith to fight*

 

great thanks so much as usual @dave30th, & @adambeyoncelowe you are awesome in that interview

 

Thanks everyone! I thought I was wittering on, as per usual, but my husband was quietly playing the PlayStation in the background (I've shifted my office from the cold spare room to the dining room table), and he said I got across a lot of information in a short space of time. There was loads more I wanted to say, however, so clearly I could've gone on!

 

@adambeyoncelowe I am so glad you are taking all this on! I just find I’ve not got the emotional energy!! Thank you.

 

No problem. It helps that early on I remembered it all in quite a lot of detail, and putting it down in writing helps me to retain that detail, so it becomes a positive feedback loop.

The more I write about it all, the more I remember.

 

Sometimes less is more. You got the message across very well and @dave30th did a good job on clarifying further when it was necessary. I've listened to the entire interview and it was very well put together. Thanks for the great pre-buttle.

 

Thanks! I was trying to keep it brisk and quick so as not to subject people to a long video, but Adam had so many interesting points to make that sometimes it was challenging!

 

It's one thing to know it, but you communicate it very well. Discussions about this can easily get lost in meaningless details, you make it relatable, especially compared to their robotic "I'm right, you're wrong" and "listen to the patients, no not those many patients" strategy that only works behind the scenes in a closed bubble.

No wonder the roundtable fell completely flat, but they have to explain this. They can say that NICE did this and that all they want, as you mention the GRADEing was done independently anyway, but the roundtable was held as a result of their petty antics, and they have to account for why none of those issues were even raised and why people involved were basically confused at what the issue even is.

You raise an important point about how their thing is clearly strategic: that the points they made often contradict some of their own claims, because they made this list based exactly on the flaws that the committee raised, to the point where they make contradictory arguments about the same thing because of it. They clearly don't bother with the facts or what happens to patients, this is about winning to them. Nothing else.

Glad you're involved in this Adam. It's often annoying when patients are involved but they keep it too restrained and don't go for the killer shots. These people are lying, self-serving charlatans and it needs to be said over and over again because it's the simple truth.

And thanks David! Good questions and clarifications of the main points. On substance, this is devastating. If only that mattered.

 

Just finished watching the video @adambeyoncelowe & @dave30th

BRILLIANT!!

Well done

 

I don’t know if the final article will have ‘eight major errors’ in the title, but I was just thinking that normally I would avoid anything based on a specified number of points, on line they usually end up being click bait and in magazines they usually end up having an arbitrary list written to just make up the desired number of words.

Is the current working title for this great exposé intended to convey how bad the NICE review is because it has so many ‘errors’ or to convey how clever the authors are, presumable all of however many of them there will be, being able to think of so many? Surely the number of issues is irrelevant, rather how significant the issues are. A more rational formulation would look at just two issues, how reliable was the evidence review, and how justified were the recommendations not based on experimental evidence.

I suspect this arbitrary formulation relates to what we have known all along that the BSP ideologues are not interested in promoting understanding of the issues rather trying to ensure their position comes out on top.

 

It was my pleasure!

 

And you are very good at it! Each point could have been a video of its own, TBF.

It's quite frustrating that they don't engage; they just shout.

I am reminded again of the reports I received from the roundtable. Everyone went in prepared and armed with facts... except for the "complainants" themselves.

No doubt they'd been briefed, but only in the usual arguments. They're not used to having those arguments challenged, so quickly fell silent.

Which is why they never want to engage. It's why they send emails once everyone's left the room and have private chats with people to pull strings. Because they know their arguments can't survive the light of day.