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Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.
MrMagoo
Senior Member (Voting Rights)
At the end of his tweets (point 5) he’s saying that, to him this shows AfME prefer ideological bias over science (paraphrasing)
why did he decide to start tweeting this- which seems to try to undermine AfME- yesterday? (Again, I’m not a scientist so the media/social interests me).
why did he decide to start tweeting this- which seems to try to undermine AfME- yesterday? (Again, I’m not a scientist so the media/social interests me).
rvallee
Senior Member (Voting Rights)
Aside from the absurdity of arguing that criticism of the trial happened after they found out what was in the trial...
And only loosely related, but this is something I keep seeing lately and although Garner didn't use those words, he kind of said the same thing. When it comes to bad trials of dubious treatments, especially psychological woowoo but generally about EBM pragmatic trials, I don't know if it's some latest buzzword that was discussed in some "talking points" action plan, but I just keep seeing the same framing: how they were "well-designed".
And this here sort of overlaps. I don't agree that PACE was well-designed, but more than anything it's a worthless argument, because design is not function, and anyone who praises the design of a trial is simply ignoring the substance. The idea of adding an APT arm, which I frankly doubt only happened because AfME demanded it, is an issue of design.
Design is largely irrelevant here, lots of well-designed trials and studies, or even products and technologies, are also worthless, and obviously an open label pragmatic trial using only subjective outcomes that explicitly tries to influence participants' responses on unreliable questionnaires can only be said to be "well-designed" if the intent is to prove that psychological coaching can treat CFS, rather than finding out whether it does. And since when they found it out that it doesn't, they simply changed the design in secret, we know for a fact that the design was meant to prove their conclusions, not as a serious trial.
Like arguing about how well-built a house is from a picture of the front, from an angle that would entirely miss if it's simply an empty façade. Which was very much the case with PACE. This framing is usually said by the less militant proponents, but I just keep seeing it and it's basically like putting a shredder to my eyes every time I see it.
In my old profession, software development, you can create a design that looks like a functioning software but isn't connected to anything, doesn't do anything. It just looks like it does. A well-designed empty shell. No one would buy that, because we're a serious profession and we can't get away with stuff like that.
And only loosely related, but this is something I keep seeing lately and although Garner didn't use those words, he kind of said the same thing. When it comes to bad trials of dubious treatments, especially psychological woowoo but generally about EBM pragmatic trials, I don't know if it's some latest buzzword that was discussed in some "talking points" action plan, but I just keep seeing the same framing: how they were "well-designed".
And this here sort of overlaps. I don't agree that PACE was well-designed, but more than anything it's a worthless argument, because design is not function, and anyone who praises the design of a trial is simply ignoring the substance. The idea of adding an APT arm, which I frankly doubt only happened because AfME demanded it, is an issue of design.
Design is largely irrelevant here, lots of well-designed trials and studies, or even products and technologies, are also worthless, and obviously an open label pragmatic trial using only subjective outcomes that explicitly tries to influence participants' responses on unreliable questionnaires can only be said to be "well-designed" if the intent is to prove that psychological coaching can treat CFS, rather than finding out whether it does. And since when they found it out that it doesn't, they simply changed the design in secret, we know for a fact that the design was meant to prove their conclusions, not as a serious trial.
Like arguing about how well-built a house is from a picture of the front, from an angle that would entirely miss if it's simply an empty façade. Which was very much the case with PACE. This framing is usually said by the less militant proponents, but I just keep seeing it and it's basically like putting a shredder to my eyes every time I see it.
In my old profession, software development, you can create a design that looks like a functioning software but isn't connected to anything, doesn't do anything. It just looks like it does. A well-designed empty shell. No one would buy that, because we're a serious profession and we can't get away with stuff like that.
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Jonathan Edwards
Senior Member (Voting Rights)
I suspect he had just come to hear about AfME being involved the day before from one of his PACE friends.
I wonder who he thinks he is tweeting to since most people who have any idea what PACE is about will have a much more detailed understanding of the history than he does. Presumably it is for the benefit of those elderly medical people who wander about Wimpole Street hoping to find other like minded souls equally lost to help them confirm their beliefs in the greatness of British Medical Science. And who knows if they are lucky they may get invited to sit on another committee in order to ensure their views are not lost to empty air.
Jonathan Edwards
Senior Member (Voting Rights)
Ah, but he (Garner) was misled, under a delusion, because of the effect of his mind over his body at the time, which he put right by switching to the right effect of mind over body instead of the dodgy one. Its all due to the mind-body you see.
MrMagoo
Senior Member (Voting Rights)
The whole point of his tweets is to say AfME had ideological bias, and despite designing part of the PACE trial, after the results were in, they distanced themselves.
Apart from that not necessarily being what happened, what’s the point of telling people that AfME is “ ideologically biased” citing a widely-derided trial, whose very name is shorthand for “here’s what NOT to do”.
It's a bit like criticising the health and safety record at the bullet factory, after someone has bought a gun and gone on a shooting rampage I.e. a fairly irrelevant side issue.
Apart from that not necessarily being what happened, what’s the point of telling people that AfME is “ ideologically biased” citing a widely-derided trial, whose very name is shorthand for “here’s what NOT to do”.
It's a bit like criticising the health and safety record at the bullet factory, after someone has bought a gun and gone on a shooting rampage I.e. a fairly irrelevant side issue.
There was a recent Westminster hall debate . Was there not similar activity after the last one ?
Speech isn't free, the right to freedom of expression is subject to duties and responsibilities.
5 April 2023
Adil v. GMC
High Court Judgment Template (judiciary.uk)
A brief summary can be found here:
Covid and Free Speech in the High Court - UK Human Rights Blog
Full text of Article 10 of the UK Human Rights Act 1998 is:
“Freedom of expression
1 Everyone has the right to freedom of expression. This right shall include freedom to hold opinions and to receive and impart information and ideas without interference by public authority and regardless of frontiers. This Article shall not prevent States from requiring the licensing of broadcasting, television or cinema enterprises.
2 The exercise of these freedoms, since it carries with it duties and responsibilities, may be subject to such formalities, conditions, restrictions or penalties as are prescribed by law and are necessary in a democratic society, in the interests of national security, territorial integrity or public safety, for the prevention of disorder or crime, for the protection of health or morals, for the protection of the reputation or rights of others, for preventing the disclosure of information received in confidence, or for maintaining the authority and impartiality of the judiciary.”
5 April 2023
Adil v. GMC
High Court Judgment Template (judiciary.uk)
A brief summary can be found here:
Covid and Free Speech in the High Court - UK Human Rights Blog
Full text of Article 10 of the UK Human Rights Act 1998 is:
“Freedom of expression
1 Everyone has the right to freedom of expression. This right shall include freedom to hold opinions and to receive and impart information and ideas without interference by public authority and regardless of frontiers. This Article shall not prevent States from requiring the licensing of broadcasting, television or cinema enterprises.
2 The exercise of these freedoms, since it carries with it duties and responsibilities, may be subject to such formalities, conditions, restrictions or penalties as are prescribed by law and are necessary in a democratic society, in the interests of national security, territorial integrity or public safety, for the prevention of disorder or crime, for the protection of health or morals, for the protection of the reputation or rights of others, for preventing the disclosure of information received in confidence, or for maintaining the authority and impartiality of the judiciary.”
MrMagoo
Senior Member (Voting Rights)
He can “drag” or try to smear AfME all he likes, but nobody cares what a charity’s involvement in some research was, over a decade ago, which they’ve since issued a statement about.
I think when DecodeME concludes next year, AfME will be the good guys.
And by the same token, I can clearly recall watching Paul Garner on a tv interview insisting that he remained ill after his Covid infection due to something the infection had caused, and him being a Professor of epidemiology and all. Which Paul does he want me to believe, 2020 Paul or 2021? We can all play this game.
I think when DecodeME concludes next year, AfME will be the good guys.
And by the same token, I can clearly recall watching Paul Garner on a tv interview insisting that he remained ill after his Covid infection due to something the infection had caused, and him being a Professor of epidemiology and all. Which Paul does he want me to believe, 2020 Paul or 2021? We can all play this game.
Possibly tangential (I often am!) but I think I recall a feature on BBC Radio 4 where scientists recounted setting a puzzle for a chimpanzee and a child. They showed them a solution to the problem and both adopted that strategy. They then removed a cover which allowed them to see that several steps were unnecessary - the chimpanzee immediately modified it's approach but the child persisted - perhaps you (or someone else) referred to "culture" as an explanation of behaviour?
Basically everyone(?) knows that subjective outcome criteria are unreliable for activity monitoring - just do what everyday folks do - buy a "Fitbit" (actimetry) or whatever - and/or place some trust in whether people can return to work, education ---.
Interesting to see (above) that the PACE authors dropped actimetry as they could see it didn't give the "right result" (that the intervention worked!)!
All of this reminds me of @Jonathan Edwards advice to @Dania Ala (if I recall correctly!) i.e. that she should study the psychologists/"scientists" (re ME/CFS); while I find them annoying - the psychology is probably very informative of human behaviour e.g. re conflict --- do we blindly follow culture [EDIT "/tribe"] regardless of it's evident futility? Presumably humans need science to try to remove their inherit inability to be objective in certain circumstances - chimpanzees may not!
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Sounds like the chimp felt the task was to complete the puzzle and then they would get the reward, whereas the child had been put in a different 'task' which undoubtedly included social pressures/coercion/behavioural psychology and so knew they also had to factor in the risk of 'displeasing' someone who held power over them
SO yes hugely relevant to basically what this area obsessed with CFS / ME patients actually engages in
I suspect the culture part is indeed about the 'primary benefits' and secondary benefits for the researchers and those lower down the chain. There is likely to be their own personal agendas, preferences of those who might fund certain things but also I suspect the perhaps already held beliefs of those who they hung around with in the profession. I remember someone saying in a talk on league tables for unis that the test of whether you've got the methodology right there (you can choose various factors and weightings) has to bear in mind that if Oxbridge appeared nowhere near the top then they would be likely to be disbelieved (at that point in time).
Which reminds me about how the answer really does require 'points of reference' re: disability-level when testing out any future scales or measures be they subjective or objective. FOr something to make sense then - and I'm assuming and hoping we are talking about newbies one day entering the field on this - the points and the changes need to represent meaningful things. Like eg someone who is moderate/severe being able to move from once a week showers to twice a week without changes in their cognitive capacity, sleep needs or other symptoms going haywire - as measured over the long-term ie it is kept up for 6months and then measured to make sure it wasn't 'kidding themselves' and followed by slow deterioration at 6-12months. And that can't be 'cheated' by exerting social pressure meaning people are showering differently (shorter) because they feel they have to 'give people the right answer' and have cut back on everything else.
So I agree 100% this just cannot be measured by some PROMS like the fatigue scale. I'd definitely be keen for the measures the study this year that was linked to Bateman (I think a PhD student and linked to them?) of number of hours vertical/reclined is important too. But there are all sorts of other things where it's like a situation of if you aren't measuring everything then it will just be using pressure to get the result on those that are whilst the downsides 'pop up' on other things.
But all of this underlines how it isn't necessarily the data that is the problem but the 'who' and an honourability and skill issue. And an attitude towards measures and reporting and any influence that might be involved there. How we fix the issue of 'fishing for' then using influence to be the louder voice over those who don't...?
Peter T
Senior Member (Voting Rights)
It is decades since I looked at the studies on such as conservation of number or volume in child development, ie knowing that seven sweets spread out is the same number as seven sweets close together or pouring liquid between different shaped containers. The traditional studies looked at the experimenter making deliberate changes then asking about those changes, however if a naughty toy made the changes children could more reliably display an understanding of conservation of number or volume at a much younger age.
The interpretation of this was that the children apparently failing was not due to a failure to grasp the concept, but rather they were assuming if the adult made a deliberate change they wanted that reflected in the child’s answer.
A reminder from the mod team that this thread is about Paul Garner. We have split off some of the posts about the PACE trial. If you wish to continue discussing aspects of the PACE trial, you can do so on this thread: A general thread on the PACE trial!
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yes, actually I think he said it was "shite." But in any event, he invited me to give a talk to his research group about PACE and how awful it was, and I did that in Sept 2020. By the next month or maybe two he was trashing everyone who had criticized PACE as having bamboozled him.
I doubt there's any reason per se why he's put out this series of stupid tweets now about Action For ME's role. I guess he just gave that Sense About Science talk so it's on his mind, or whatever, or maybe as was suggested he heard some new tidbit about what happeend that he thinks is some sort of clincher. I don't think it's part of a strategy or plot.
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Yes. So you can see how the initial incarnation vs the additional amends takes it less and less from whyever it was signed off. But I get the staffing changes notes too.
It is interesting to hear Action for ME said something / changed their mind and backing ?
I’m intrigued given the current situations - but then doesn’t everything in this world often seem like a re-run of Groundhog Day but with slight changes every so often - as to why Paul is focusing on Action for ME this time and today and now? I know the debate is the now, but in relation to choosing Action for ME specifically why now or has he been harping on with this same distraction for ages?
MrMagoo
Senior Member (Voting Rights)
I didn’t want to have to look through his timeline but I saw some other AfME dragging.
AfME is all over decodeME so I’m hoping chickens will come home to roost next year when factual physical science things can be said about ME.
As for the PACE dinosaurs, their time has been and gone. We’ve all got wearables now, they can’t keep gaslighting and fiddling with semantics. Bullying, gaslighting and abuse can only thrive when people are divided, since the internet and social media, their days have been numbered. So let Paul do his echo-chamber tweets.
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