Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

Bit cruel but ---

 

I have had a deep interest in US politics and the broader phenomenon of political culture for years, how it plays out on the Internet, disinformation, trolls and the like. I could speak about this for hours without preparation (if I had my brain back) as easily as I could talk about ME.

You are absolutely right. I see exactly the same behaviors and personalities: messianic, absolutist, rejecting all nuance, prone to logical fallacies and magical thinking. Almost every day I notice the overlap, it's getting seriously old and grating.

And really I have to emphasize that it's not similarities, it's an identical overlap. It's the same thing applied to a different context. It doesn't matter if it's some reactionary politician raging with weird ideas about how women being free has been the downfall of civilization, or our biopsychosocial overlords making all sorts of weird accusations about us and mind-body-this-and-that. It's the same thing. The exact same flaw of reasoning and lack of basic attachment to reality. They choose their own facts, interpret them as they wish to fit their prior conclusions. They "do their own research", the only difference here is that the pseudoscience alternative facts have achieved dominance in the culture. Same as it used to be a simple fact of life that there were peasants and there were lords, and that was that.

Seeing how large segments of the medical profession behave exactly the same way as Internet trolls is very revealing of human nature. The former do it with a bit higher literacy level, they use fancier words, but they're speaking the same ideas, with the same intent and they reason the same way.

It got me to conclude that intelligence is almost entirely social, that individual intelligence barely matters, and that the way it works is similar to how slime mold explore an area: human intelligence just goes everywhere, has all the ideas, especially the bad ones, and some of them survive by succeeding in a way that can't be ignored, they just do objectively better, usually by making someone a lot of money. Since psychosomatic ideology has never achieved anything, it just continues thriving simply because in a large human population, all the ideas will keep on being thought, even the bad ones, especially the bad ones, since most ideas are bad.

And it got me to think that no matter how advanced we get as a species, even if we do achieve Star Trek level of "space luxury communism", there will be people trying their best to bring it all down. I think it's built in the code for our intelligence, that there will always be people unhappy with how things are, even if they're great, even if they themselves are doing great. It's like some sort of cognitive equivalent of how there are fungi and other organisms that will decay everything organic so that it gets renewed.

 

https://twitter.com/user/status/1770534140749750541


PG:
Some top tips from
@Fionas_Story
on mind-body, neural pathway disorders, which include #mecfs, alot of #longcovid, and chronic pain disorders

Fiona: It's really strange seeing a community note go up about evidence on the post of an Emeritus Professor who knows his stuff about infectious diseases. People might do well to consider what that says about how useful community notes are on Twitter.

 

Yer, well, some emeritus professors knows their stuff and others don't, seems to me.
Fiona needs to learn a little about the real world of science and the phoneys who tag along.

 

She should consider what it says about Garner that he collects so many community notes.

 

Well I have to say that I saw fear in his eyes when I watched his interviews on 2 separate US news channel a few of years during his Covid infection.

 

I didn’t know “emeritus professor” meant someone was infallible!

 

Hmm, this is an interesting new tack from PG - drags AfME into the mix on PACE. Slightly strange that he's not tagged them in his posts, almost like he doesn't want to be challenged on it, perhaps?

ETA: I like the fact that @PhysiosforME have replied

 

I can only see tweet 1. Where does AfME come in?

They had a reasonable question, appallingly bad methods, deliberate gerrymandering in the steering committee, biased information for patients and a team unable to accept its negative results. Som what's new?

Even Simon Wessely backed off when I pointed out that his arguments revealed either a deep misunderstanding of trial design or deliberate misrepresentation of the situation. White and Sharpe never did, but then it was their paper. Why on earth does garner feel the need to make himself look so dumb?

 

I think Garner is just parroting something from Michael Sharpe or Peter White - maybe something they would not actually say out loud at a meeting in Bristol though.

Trumping a 'respect' for science, including very bad science, may be no bad thing, Dr Garner.

 

Garner states - "2. The CEO of Action for ME and other senior staff helped plan the PACE trial. That’s why the adaptive pacing arm was added, and designed to the charity’s specifications."
Which is a very weak argument i.e. the problem was that the claimed success was based on unreliable outcome criteria (self reported questionnaires) - conveniently ignoring the objective outcome criteria --- ability return work, education --- actimetry [Fitbit type devices] --- which all demonstrated the intervention was ineffective!
Blaming a patient organisation, for poor quality science, and indeed the scientists failure to fess to the fact that the data was unreliable, is poor form --- nothing more than we'd expect from Garner et al of course!

I noticed @Snow Leopard [@SnowyPanthera] responded - !

EDIT - decided to reply!

 

Garner really is getting into a muddle.
Good point about the change at AfME being in 2018. Certainly in 2014 Peter White was welcomed to defend the PACE trial at CMRC in Bristol

And the post-hoc faux-pas is classic.
The man appears to understand nothing about what these words mean.

 

I completely agree with your overall point, that objective primary outcome measures would have given more reliable results.

But the published protocol paper, published in 2007, long after they started planning and indeed doing the trial, does not list actigraphy as an outcome measure, only as a predictor.

In the Trial Management Group minutes in 2004-5, you can see they they did consider whether or not they should make actigraphy not just a predictor, but also an outcome measure, and opted not to for well-dodgy reasons.

In the minutes the primary outcome measures were always questionnaires - Chalder Fatigue and SF36 physical function - right from 2003 (see the Trial Management Group minutes Trial Management Group minutes Meeting No. 2). In TMG meeting #7 they did discuss whether they should have an objective primary outcome measure, but clearly they ultimately decided not to. They seemed most interested in the potential of the 6 minute walking test:

Regardless of what became of actigraphy, if the 6MWT or step test had been adopted as a primary outcome, then the reception of the trial might have quite different. I think we can guess what the "raw data of Oxford Trial" showed, but does anyone know?

So the PACE investigators saw the disappointing results of trials with objective measures, didn't like the results, and omitted them from their primary outcomes without a solid scientific rationale, which is not how science should work.

Garner argues that patients/activists/patient organisations see the results of trials, don't like the results, and criticize them unfairly, which is not how science should work, and cites AfME's U-turn. However, plenty of people were able to see that the proposed methods would reach unreliable results, long before those results were published. The ME Association and others did not need to see the results of the trial to know the trials were problematic. PACE trial management group meeting minutes in 2004 and 2005, ie 6-7 years before publication of the results, refer repeatedly to a "campaign to stop PACE and FINE", letters of complaint etc.

So Garner will have to come up with a different argument.

Anyone have a copy of this they could upload?
ME Association. MEA calls for PACE trial to be scrapped. ME Essential, July 2004: 91: 3–4.