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

SNT Gatchaman said:
Compare and contrast with Michael Osborne, Professor of Machine Learning at Oxford. Happily he seems to have spontaneously recovered from LC - which is so uplifting to read.

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The most significant thing about this tweet is the universal agreements in the replies. The failure is total, the kind that simply never happens with expert professions. Because whenever this kind of universal failure is a possibility, genuine experts adapt and move away from failure, they build feedback loops and learn from bad outcomes. They certainly don't attribute themselves good outcomes they had nothing to do with. That's just grossly unprofessional.

Experts don't accept universal failure, because they are held accountable. This is what happens in a system devoid of accountability, even with experts in the best circumstances, if just falls apart completely.
 
rvallee said:
The most significant thing about this tweet is the universal agreements in the replies. The failure is total, the kind that simply never happens with expert professions. Because whenever this kind of universal failure is a possibility, genuine experts adapt and move away from failure, they build feedback loops and learn from bad outcomes. They certainly don't attribute themselves good outcomes they had nothing to do with. That's just grossly unprofessional.

Experts don't accept universal failure, because they are held accountable. This is what happens in a system devoid of accountability, even with experts in the best circumstances, if just falls apart completely.
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Anne Kielland from "Tjenesten og MEg" that has looked at how the Norwegian health service meet ME patients has among other things said that what surprised her the most was that they found no one when collecting their data who had been helped by the rehabilitation centers pwME are sent to. And "everyone had at least one good meeting with a health care provider" is not exactly high praise.
 
Midnattsol said:
Anne Kielland from "Tjenesten og MEg" that has looked at how the Norwegian health service meet ME patients has among other things said that what surprised her the most was that they found no one when collecting their data who had been helped by the rehabilitation centers pwME are sent to. And "everyone had at least one good meeting with a health care provider" is not exactly high praise.
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By the looks of things soon the NHS and others may just be replacing that one good meeting with an app on your phone. It will probably gaslight you less so its bound to review better than a doctors appointment, you can even use it at home!
 
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FMMM1 said:
"SENSE about SCIENCE --- Because evidence matters ---"
Anything less appropriate to live up to the lingo?
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Malboro --- We care about your health
Facebook --- We value your privacy
Literally any bank --- We're not really in this for the money
Big mega chemical corp --- Because the environment is sooo important

Although frankly, pretty much equal.
 
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It's difficult to emphasize just how insane it is to hold medical progress for tens of millions of people based entirely on arguments that are fully limited to "it can, you can't prove it's wrong", even though the same argument is even more valid against this position and that argument is a famous logical fallacy.

It can. Millions of lives are ruined on this flimsiest of beliefs: it could be true, it can work. Even though it's the current paradigm going on for years, the entire evidence base amounts to: it's possible, it can be of help to some. That's it. And heaps of evidence against. Outside of the worst things and places of the world, crime, human traffic, environmental destruction, terrorism, this ideology is one of the most insane things in the modern world, by a very wide margin.

At this point and given everything that happened, I cannot see these people as any different than religious fanatics imposing their beliefs onto people simply because they can. Because they sure can and do. They even talk the same way and have the same glassy-eyed look.
 
from the recovery Norway post in above thread
"Once I started to get better, I was advised by many experts that the only way to get back to full health was to PACE. I was introduced to something called the Spoon theory. This meant building up activity so slowly that you walked, for example, an extra minute a week and only every other day to make sure you didn’t react to the increased effort and not on days where you had increased other activity such as work. I was improving, but it was painstakingly slow and I was frightened."

this is neither pacing nor the spoon theory............who are these 'many experts' who advised her?

(I trained to be an NLP trainer and had done quite a bit about the mind body connection anyway and know it to be significant. However, I’ve never made money out of it. I run training courses for leaders in organisations. I use some of the principles of NLP in this but nothing to do with long covid or ME /CFS etc).
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ah now it makes sense.
 
Sly Saint said:
from the recovery Norway post in above thread
"Once I started to get better, I was advised by many experts that the only way to get back to full health was to PACE. I was introduced to something called the Spoon theory. This meant building up activity so slowly that you walked, for example, an extra minute a week and only every other day to make sure you didn’t react to the increased effort and not on days where you had increased other activity such as work. I was improving, but it was painstakingly slow and I was frightened."

this is neither pacing nor the spoon theory............who are these 'many experts' who advised her?



ah now it makes sense.
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That is literally how some GET is described when patients say they can't do a workout. Increments that are impossible in day to day life.
 



Paul Garner
·
Nov 19, 2022
@PaulGarnerWoof
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Graded exercise therapy in the PACE trial, was reflexive, individualised and negotiated. "The common chosen exercise was walking” Lancet 2011. It’s often represented by activist groups as something else. Useful and sensible approach once people have established their baseline


Physios For ME
@PhysiosForME
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Concise information for all health professoinals can be found via our “seven slides” series, which can help to provide the underpinning knowledge required to understand why this tweet
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contains inaccuracies
physiosforme.com
Seven Slides for Physios | Physiosforme
6:38 PM · Nov 20, 2022
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Quite apart from anything else, I am also extremely wary of things like "negotiated", "mutual planning", etc., because vulnerable patients can be ... vulnerable ... to assertive, pushy clinicians biasing supposedly-agreed-to plans toward something significantly removed from what the patient might feel comfortable with. Especially when the clinician is convinced the patient's main problem is they need to be coerced out of their comfort zone.
 
The more I look at the behavior of some people and Garner's, his specialty and work as a Cochrane co-founder, the more I am convinced that what's happening is to prevent evidence-based medicine from falling apart.

I can only assume that this is a major reason why things are held up at Cochrane with the updated review. Watching Garner's bizarre unprofessional behavior makes the idea that he and others aren't working their asses off preserving their legacy laughable. It's probably even more heavy-handed than with NICE because Cochrane is mostly a private club, it's not subject to public oversight anyway.

This has little to do with us anymore. It's about EBM and how its massive failure is being held off as long as possible.

Because let's be honest here: this is eminence-based medicine, the basis for everything was always "trust us, we're experts, the evidence is that we know better". It's not the evidence that matters, it's that professional and institutional reputations are the only thing backing this up. If it blows up, it's those reputations that will take the hit, as well as the general idea that it's possible to build evidence strictly out of professionals doing their thing, even if it's a fully subjective and arbitrary process where outcomes aren't even checked.

This is simply too bizarre to explain otherwise. It's the last gasp of this ideology, but they are prepared to go nuclear and not give a damn about all the harm they're causing, they don't even see it.
 


A 'conceptual model' of chronic fatigue. He really is down the rabbit hole, with his friends in the Netherlands and Norway.

PS I advise people to screenshot Paul's posts to share here, just to document his nonsense. He's clearly not going anywhere, and I have a feeling he might even be ready to spend more time pushing this crap now that he is retired.
 

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InitialConditions said:
PS I advise people to screenshot Paul's posts to share here, just to document his nonsense. He's clearly not going anywhere, and I have a feeling he might even be ready to spend more time pushing this crap now that he is retired.
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Good idea, especially with Twitter's future in doubt.

We have a thread on the paper here:
https://www.s4me.info/threads/learn...rds-chronic-fatigue-2018-lenaert-et-al.21849/
It was published in 2018. We thought it was prejudiced twaddle then and no doubt will think the same now.
 
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