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

Thankfully I missed all this on Twitter (blocked him long ago, but never engaged with him so didn't get blocked by him) and catching up here.

It's telling that he gets so few likes for these posts, which suggests most of his actual, irl, (co)believers aren't there. So, why keep going out of his way to stir things up?

PG seems to be increasingly in a group of one that sets out to deliberately bait pwME (and by the looks of it, pwLC). Like those who still insist on using CFS/ME or CFS (but who appear to have largely moved on and left us alone, at least publicly), it seems to deliberately seek to get a rise out of his pronouncements and thus confirm his assertions that there is a baying mob.
 
Garner doesn't seem to understand the topic of placebo and nocebo well. If a person is told that they're about to receive treatment that will reduce their symptoms, then the person's mood will improve and their behavior will change to reflect the expectation. It's not surprising that the person will be less concerned if they're told they will improve. The level of concern will affect how people rate their symptoms. What is often seen as a placebo/nocebo effect in reality consists of several different effects, such as improvement due to passing of time.

If you can understand the difference between being told to be a lottery winner and actually winning then you can understand the difference between a placebo and a real treatment. Being told to have won will also have positive effects for a while.

There's a lot of evidence on placebos and their objective impact on illness and as far as I know this evidence consistently shows no meaningful effects.

Trying to cure ME/CFS via manipulation of perception implies that the illness merely a perception problem with no underlying biological causes. The evidence doesn't support that view. We've had studies like PACE that operated on this assumption and it showed no reduction in disability despite a more positive" perception of symptoms.

I would also be worried about causing harm. Downplaying the illness could lead to worse management of the illness.
 
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Garner doesn't seem to understand the topic of placebo and nocebo well. If a person is told that they're about to receive treatment that will reduce their symptoms, then the person's mood will improve and their behavior will change to reflect the expectation. It's not surprising that the person will be less concerned if they're told they will improve. The level of concern will affect how people rate their symptoms. What is often seen as a placebo/nocebo effect in reality consists of several different effects, such as improvement due to passing of time.

There is a lot more than expectancy biases too, but yes I agree he seems to deliberately ignore all of the biases.
 
Do we know about Garners views on ME/CFS and mind-over-body therapies from before his episode of post-infection fatigue? (Maybe it's somewhere in this thread; I haven't read it all.)

It seems so unlikely to me that he suddenly developed this strong conviction and a will to devote his life to this. It doesn't seem rational.

Was this something he engaged with previously, and he took his post-invention fatigue as a reason to go all in on it, with the rhetoric of personal experience?

Or was he so brain-washed be Lightning Process therapy that it changed his life around?

Has he always been a person of strong and shifting convictions?
 
I watched him circling the drain live on CNN during his Covid infection drama. Then he was put in touch with a PhD candidate in psychology from Norway who had completely recovered from post viral fatigue syndrome (CFS/ME). My impression is that it started from there.
 
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Do we know about Garners views on ME/CFS and mind-over-body therapies from before his episode of post-infection fatigue? (Maybe it's somewhere in this thread; I haven't read it all.)
I did not find anything on google with the search «before:2020 paul garner me cfs».

I think the belief is that his friends at Cochrane put him in touch with Live Landmark (the LP phd student).
 
Do we know about Garners views on ME/CFS and mind-over-body therapies from before his episode of post-infection fatigue? (Maybe it's somewhere in this thread; I haven't read it all.)

It seems so unlikely to me that he suddenly developed this strong conviction and a will to devote his life to this. It doesn't seem rational.

Was this something he engaged with previously, and he took his post-invention fatigue as a reason to go all in on it, with the rhetoric of personal experience?

Or was he so brain-washed be Lightning Process therapy that it changed his life around?

Has he always been a person of strong and shifting convictions?
It could possibly be related to his sister? She was reported to teach pacing for fatigue (or something along those lines)
 
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It seems so unlikely to me that he suddenly developed this strong conviction and a will to devote his life to this. It doesn't seem rational.

Actually, I think this is exactly what happened. He convinced himself he was going to be ill for years and then he recovered after being introduced to a new way of thinking about his illness. That's probably a really powerful experience. He also happened to retire around this time, which probably explains why this has become his new hobby. I've not seen anything from before this period that suggests he was a potential BPS fanatic.
 
It could possibly be related to his sister? She was reported to teach pacing for fatigue (or something along those lines)
From BMJ:
I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long. I talk to my sister. Her personal experience of ME really helps, and she coaches with practical management of chronic fatigue.
I don’t know who his sister is. It would be interesting to see what she’s said over the years.
 
Thankfully I missed all this on Twitter (blocked him long ago, but never engaged with him so didn't get blocked by him) and catching up here.

It's telling that he gets so few likes for these posts, which suggests most of his actual, irl, (co)believers aren't there. So, why keep going out of his way to stir things up?

PG seems to be increasingly in a group of one that sets out to deliberately bait pwME (and by the looks of it, pwLC). Like those who still insist on using CFS/ME or CFS (but who appear to have largely moved on and left us alone, at least publicly), it seems to deliberately seek to get a rise out of his pronouncements and thus confirm his assertions that there is a baying mob.
His emails with the Canadian guideline project even make it clear that they struggle to find laypeople. Most of the ones around them have something to sell, and they probably have 10 health care professionals for every recovered patient they bring along. It's like a pack of sheep where most of the sheep are wolves in sheep's clothing. They claim to represent all sheep, but can barely find one that isn't either a wolf in disguise, or is only there to get paid.

But what he gets on social media is irrelevant, especially on twitter. Even legitimate advocacy has entirely died out. It's what he does behind the scenes with his fellow lobbyists that matters. It is effective, because unlike the patient community, he has access to everyone, in secret, behind closed doors. And they're winning, because they have all the power and are free to abuse it as much as they want.

He's not alone, though. It's roughly the same cabal as always, a group of maybe 30-50 ideologues carrying the same work Wessely pushed into the mainstream, unchanged for the most part, while carrying a confused message that both claims this is all deconditioning that needs proper supervised exercise, but also, a more popular belief in the profession, the fear model where no such thing is needed, and even the most severe patients, bed-bound for years, could simply get up and live a normal life.
 
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He also happened to retire around this time, which probably explains why this has become his new hobby. I've not seen anything from before this period that suggests he was a potential BPS fanatic.
Well, there's a career spent in evidence-based medicine. This would prime anyone to accept all sorts of BS, especially if he shares the view that it's a superior type of evidence. Which he appears to, it is the idea behind Cochrane, after all.

Literally all the evidence the ideologues use come from EBM, the most inferior knowledge system ever used by any group of professionals. The knowledge system of very last resort, when science has failed, and is only ever useful if and when the science that goes in is good.

So I'd say he was really a prime candidate for this, in a similar way as a career as a theologian would make someone more likely to believe in miracles than a random non-religious person. Then you add a chance personal experience that flatters the ego, and you have a perfect recipe for believing in miracles about superior minds overcoming, uh, its own shortcomings, I guess. Because the idea is that the mind heals what the mind breaks. So, basically, ideological homeopathy, without the water, only hot air.
 
Garner doesn't seem to understand the topic of placebo and nocebo well. If a person is told that they're about to receive treatment that will reduce their symptoms, then the person's mood will improve and their behavior will change to reflect the expectation. It's not surprising that the person will be less concerned if they're told they will improve. The level of concern will affect how people rate their symptoms. What is often seen as a placebo/nocebo effect in reality consists of several different effects, such as improvement due to passing of time.

If you can understand the difference between being told to be a lottery winner and actually winning then you can understand the difference between a placebo and a real treatment. Being told to have won will also have positive effects for a while.

There's a lot of evidence on placebos and their objective impact on illness and as far as I know this evidence consistently shows no meaningful effects.

Trying to cure ME/CFS via manipulation of perception implies that the illness merely a perception problem with no underlying biological causes. The evidence doesn't support that view. We've had studies like PACE that operated on this assumption and it showed no reduction in disability despite a more positive" perception of symptoms.

I would also be worried about causing harm. Downplaying the illness could lead to worse management of the illness.
They are also pretending to be blissfully unaware of the coercive situation that most medical and related situations create, I do not know how of course, given that everyone knows you don't upset people otherwise it will go on your record etc.

So the real reason why this area's 'invention' of removing the standard of having blinded and randomised controls is because the placebo effect isn't down to the patient but social pressure and implementation of other pressures forcing answers to be different.

Heck even in a friend situation if someone kindly gave you a special tea or little massage for your bad headache that you'd rather have refused but they were oh so keen, then it takes a certain type (on both sides, because the friend's personality making it so awkward other friends will be required to punish you for being rude) to say 'no it didn't work at all, but thanks'. And even then the thanks is polite coercion.

This area deliberately markets to supporters and those around ill people who are in a position to coerce them, not to the ill person. With promises that their treatment works and if it either doesn't work or the ill person doesn't do it then it is the ill person's fault. Along with a lot of slander about the ill person suggesting they don't even know their own mind so don't listen to them if they say it neither works or that none of that rubbish being stuck on their personality is correct. In BS terms polited over - but not much.

When it gets as bad as it has done for ME/CFS then even healthcare professionals have been lied to and told that it works and 'doesn't harm' (even when that hasn't been tested and all proof of harm has been ignored or dismissed) so that those who don't get better or indeed get worse from treatments that it turns out weren't helpful when the data was properly analysed the patient is branded not just a liar but as the classic article quoted a nurse "the ba**ards just don't want to get better". So yes, more harm on harm. What does someone say in that unsafe situation?


Normal trials or experiments that take place under standard licensing regulations (which this exempts itself from) use double-blinded in order that if a staff member is encouraging a more positive answer they don't know whether it will get subtracted from the total because they are working with someone in the control condition.

This area takes it to a new level by actively telling anyone who gives the wrong answer that it means they are still mad or confused or not trying hard enough. As part of the treatment, nevermind the test which just happens to be the same questions. I can't think of something more in need of proper methodology therefore.

If you took out the brainwashing answers to the test (which they claim is the treatment) then you should have the what the treatment actually changes beyond that. But they won't measure it.

For example most old days things for making someone more confident at maths might have a curriculum where the subject is taught different techniques to try and does lots of maths practice. And then both their confidence can be tested as well as their ability.

Because this whole industry/area claims to work in the reverse: eg give the confidence and apparently that will heal what they claim is their interpretation of the condition, they still try and get with directly only teaching people to give more confident/positive answers and then only testing whether those answers are more confident/positive, but nothing about the condition itself.

IN FACT because of the placebo, the standard norm for years has of course been that all answers due to said placebo should be being subtracted (rather than displayed as 'the effect') as error. Hence why this sort of thing is called propaganda because it is trying to addle people's perceptions of norms. Those who are onlookers that is. So that they accept things that aren't research for good reasons that everyone understood as if they are.

And gaslight people with their own words that have been put into their own mouths by coercion.
 
Do we know about Garners views on ME/CFS and mind-over-body therapies from before his episode of post-infection fatigue? (Maybe it's somewhere in this thread; I haven't read it all.)

It seems so unlikely to me that he suddenly developed this strong conviction and a will to devote his life to this. It doesn't seem rational.

Was this something he engaged with previously, and he took his post-invention fatigue as a reason to go all in on it, with the rhetoric of personal experience?

Or was he so brain-washed be Lightning Process therapy that it changed his life around?

Has he always been a person of strong and shifting convictions?
I suspect this is at best another fascinating experiment of watching those who have been indoctrinated with certain views of what pwme deserve for many many years and in their social/professional surroundings bathed in those who think that way

then having to deal with a come to Jesus moment. He may or may not have hated pwme or thought they were strange before anyway, but it only slightly changes the equation re: agenda and rewards. And how much about his conception of 'self' it is.

He was ill with covid and then - and I say this factually rather than rudely - fortunate in that it didn't turn into ME/CFS and as we know likely privilege and luck played some part in that because so many don't get either the correct advice or/and aren't in a position where they aren't overloaded with committments so can't get the rest needed in those early stages.

But perhaps those he wants to be friends with might be going to doing the same 'behavioural psychology' on him as they have with us when they recovered and basically training him by eg sneering if he suggests it was the above, and patting on the head each time he bridges it with something they approve of. Whether consciously or not. If so, no wonder his story keeps changing because such people probably also gaslight him as they do with us when they try and tell us we were deconditioned even if we were athletes and still made to do full time jobs up to collapsing.

At some point someone in such a situation might feel made to choose between being 'friends with those people' or 'being one' /probably all sorts of buttons got pushed to offer this rewarding alternative where everyone is very pleased with them. It is quite an awkward illness even to have had and be accepted etc.

Sadly when given a choice as we all know most people don't choose the maligned disabled people. And if you are well then you need to be in the world and I can't guess at what % it gets awkward with etc.

And the ticket for re-entry, like you get with most cliques, is to demonstrate you 'aren't like them/that' perhaps. The middle-ground on said cognitive dissonance to pretend it isn't exactly that is the pretence that the abuse is 'help', or some bridging narrative that works for all etc. And there are programmes the world over claiming that same thing for all sorts.

Someone in such a situation might also having to rewrite what they had to something that those people would accept, because it's only when you actually come out and/or face people with it that you realise how bad the 'stigma' is from x, y, z, .

It's only slightly less 'overt' than eg The Program (on netflix) examples the std usage of this required contract if you want to ever get out of this, in episode 2. Basically if all of someone’s mates believe it is something 'mental' then they, even if recovered, might have to go through the charade of 'accepting that they had this issue' and dealt with it, otherwise they will claim they are still in denial.

Could that sort of aspect of the situation also play a part?
 
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I suspect this is at best another fascinating experiment of watching those who have been indoctrinated with certain views of what pwme deserve for many many years and in their social/professional surroundings bathed in those who think that way

then having to deal with a come to Jesus moment. He may or may not have hated pwme or thought they were strange before anyway, but it only slightly changes the equation re: agenda and rewards. And how much about his conception of 'self' it is.

He was ill with covid and then - and I say this factually rather than rudely - fortunate in that it didn't turn into ME/CFS and as we know likely privilege and luck played some part in that because so many don't get either the correct advice or/and aren't in a position where they aren't overloaded with committments so can't get the rest needed in those early stages.

But perhaps those he wants to be friends with might be going to doing the same 'behavioural psychology' on him as they have with us when they recovered and basically training him by eg sneering if he suggests it was the above, and patting on the head each time he bridges it with something they approve of. Whether consciously or not. If so, no wonder his story keeps changing because such people probably also gaslight him as they do with us when they try and tell us we were deconditioned even if we were athletes and still made to do full time jobs up to collapsing.

At some point someone in such a situation might feel made to choose between being 'friends with those people' or 'being one' /probably all sorts of buttons got pushed to offer this rewarding alternative where everyone is very pleased with them. It is quite an awkward illness even to have had and be accepted etc.

Sadly when given a choice as we all know most people don't choose the maligned disabled people. And if you are well then you need to be in the world and I can't guess at what % it gets awkward with etc.

And the ticket for re-entry, like you get with most cliques, is to demonstrate you 'aren't like them/that' perhaps. The middle-ground on said cognitive dissonance to pretend it isn't exactly that is the pretence that the abuse is 'help', or some bridging narrative that works for all etc. And there are programmes the world over claiming that same thing for all sorts.

Someone in such a situation might also having to rewrite what they had to something that those people would accept, because it's only when you actually come out and/or face people with it that you realise how bad the 'stigma' is from x, y, z, .

It's only slightly less 'overt' than eg The Program (on netflix) examples the std usage of this required contract if you want to ever get out of this, in episode 2. Basically if all his mates believe it is something 'mental' then he, even if recovered, has to go through the charade of 'accepting that he had this issue' otherwise they will claim they are still in denial.

Could that sort of aspect of the situation also play a part?

This !
 
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