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

Jonathan Edwards said:
I don't think Garner ever claimed he was cured by the Lightning Process. He preferred to spend his money on scuba diving holidays. He seems to have bee cured by a mysterious phone call from a psychiatrist friend in the USA if I remember rightly. Although there was something about contacting some nice people in Norway as well I think.

Ah yes, he remembers it well!
Click to expand...
Bit cruel but ---
:laugh:
 
Jonathan Edwards said:
I cannot help thinking that it is a manifestation of some common quirk of human thinking trait a bit like QAnon that turns arguments back to front.

There also seems to be this tendency to club together to shout rude things in chorus.
Click to expand...
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.
 


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.
 
Last edited by a moderator:
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?
 
Jonathan Edwards said:
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?
Click to expand...
upload_2024-5-4_8-53-30.png
Click to expand...
upload_2024-5-4_8-53-52.png
Click to expand...
upload_2024-5-4_8-53-30.png
Click to expand...
upload_2024-5-4_8-53-52.png
Click to expand...
 
Last edited by a moderator:
Fainbrog said:
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?

https://twitter.com/user/status/1786405964565913821


ETA: I like the fact that @PhysiosforME have replied :thumbup:

https://twitter.com/user/status/1786493435668574710
Click to expand...


AfME were in the mix, though. They were part of the trial and supported it to begin with. They set out a position statement in 2018.

https://www.s4me.info/threads/actio...l-treatments-for-m-e-position-statement.5532/
 
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.
 
Jonathan Edwards said:
Where does AfME come in?
Click to expand...

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 - !

Click to expand...


Click to expand...


EDIT - decided to reply!
Click to expand...
 
Last edited by a moderator:
Charity changes position after data released and reanalysed. Investigators change original protocol after themselves working in clinics and meeting others who had done so and after all the data had been collected.

Which ones are allowing their ideological bias to trump their respect for science?
 
FMMM1 said:
EDIT - decided to reply!
Click to expand...

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.
It was noted that the Dutch study by Bleijenberg and colleagues reported that actigraphy was not a good outcome measure since the majority of patients are reasonably active and there is no change in this in spite of improvement in fatigue. However, pervasively passive people at baseline may do worse on CBT and perhaps better on GET.
A final decision on using this as an outcome has been postponed until we see how much of a measurement load actigraphy is, and it was agreed that this may be changed later if desired.
Click to expand...

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:
Objective Measures of outcome. We had much discussion aboutvarious potential objective measures of outcome, including a six-minute walking test where the patient is timed using a stopwatch and the distance walked is recorded. The possibilities of using actigraphy and the step test for fitness were also discussed. We agreed that we would pilot the use of actigraphy, the step test and the six minute walking test in the first three centres. We had some discussion about whether an objective measure was to be a primary outcome. We had some discussion about the power of the trial to detect clinically significant differences between groups using the six-minute walking test.
ACTION: to send raw data of Oxford Trial in which used the six minute walking test.
Click to expand...
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.
PACE Trial Trial Management Group Meeting #10 Wednesday 15th September 2004
14. ME Association
MEA have agreed to publish the response to their article campaigning to stop PACE and FINE. It was noted that there had been resignations of trustees due to divisions in the MEA about PACE and FINE.
Click to expand...
Trial Management Group Meeting # 12 Friday 10th December 2004 The MRC have received 30-40 letters of complaint about the PACE trial. It was explained that this is a result of a concerted campaign by the MEA and others.
Click to expand...
Trial Management Group Meeting # 14 Thursday 28th April 2005
ACTION 25: to send the letter regarding the campaign against PACE and FINE to the TSC for their approval for use.
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top Bottom