Brief Outpatient Rehabilitation Program for Post-COVID-19 Condition, Nerli et al, 2024 - with comment from T. Chalder
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- chalder dpq norway oslo consortium
Utsikt
Senior Member (Voting Rights)
I know it’s a rhetoric question, but I tried to look at what they’ve said in the protocol.
I believe that they are trying to argue that they only said that 10 points would be clinically significant, as in «10 points is over the threshold for minimally clinical significance», but the threshold might be lower.
The problem with that line of reasoning, is that they stated that «similarly» to their value of 10 from another study, 10 was the threshold for ME/CFS.
So they are trying to say that they didn’t say that 10 was the minimal value for CID.
However, other papers defined CID as the threshold, so the minimal part is always implied.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9210237/
So their argument shows that they don’t understand what CID means, or that they chose to ignore the meaning because it suited them. Neither are very flattering..
It mostly shows that they understand that they can provide a picture of poop on a platter in response and no one but us will be bothered by it.
And they are sadly correct. Which is a terrible indictment of academia, but they are simply correct in that nothing they say or do matters, they can still pretend like it's whatever they market it as.
Utsikt
Senior Member (Voting Rights)
Opinion piece by Richard White - he finally got access to some of the data:
And he wants to give this treatment to everyone - shocker!
Nerli answers and ignores most of the criticism or just says that it’s normal with subjective outcomes.
The fact that other studies make the same mistakes and get the same results obviously does not matter for the validity of the results. I think this is a textbook example of someone that’s «methodologically challenged».
And he wants to give this treatment to everyone - shocker!
There is a huge problem in medicine in how they assess the validity of self-rated improvement, which doesn't come close to understanding just how difficult it is to assess.
I had a really hard lesson over this in the last 2 years. I have improved considerably. 2 years ago, I was bedbound. Mainly because of out-of-control POTS, which has improved a lot since. But even with this, I was much better on several aspects of ME/CFS than I had been the year before. Mainly in odd neurological symptoms, sound intolerance, and so on. I was able to hold basic conversations for the first time in probably 4-5 years.
Since then I have slowly improved, but it only made it so obvious just how hard it is to estimate those things. At some point I used to think I was maybe at a 20-30% range of overall capacity, but seeing how much I improved since then, and how much more there is to improve, made it very clear how this 20-30% range was ridiculously over-inflated, how it was more of a 5-6% range. There's too much to consider, it's like trying to guess the number of items in a jar when there are hundreds of thousands of them, and you can only view them from a single (misleading) angle. There's just no possible accuracy here.
It's basically unrealistic to guesstimate something as complex like this on a limited, and not even linear, single digit scale. It just flat out out doesn't work. There has to be metrics, standards and objective measures to compare to. Even the simple joke of using a banana for scale makes most size guesstimates more reliable than any standard health questionnaire I have seen applied to us.
What health care professionals don't understand is that this isn't a problem for us, it's a problem, period. It's irreconcilable. There is no statistical analysis that can turn this mess of wildly inaccurate guesstimates into real practical numbers. They end up being so inaccurate in many cases it's actually worse than not trying to do that. Because they always do the thing where if the numbers look good, they are important and accurate, and if not, well they just have to figure out how to get the numbers just right. Whatever the numbers mean, which is usually both a number of unrelated things, and nothing at all. It just doesn't work like that at all.
But what it means more than anything is that none of those studies are reliable. Straight up not at all. They are not asking valid questions, making anything that comes after, analysis, interpretation, and so on, entirely arbitrary and useless for the most part.
What they are trying to do is the equivalent of doing chemistry without a reliable thermometer. It's just not possible. They could instead try to train a bunch of assistants at guessing the temperature of things by touch, and it would be exactly as useful as how questionnaires are misused in health care. They could show how most of the assistants usually have the same rough guesstimate ranges, and it still doesn't matter. They can show how multiple guesstimates made by the same person also tend to cluster near the same value, and it still doesn't matter: not accurate.
The root cause for much of this is something they will have to let go eventually: they confuse that the best they can do must be good enough, just because it's the best they can do. No, it's not. Especially not this. They even do the same thing with treatments that they poorly assess, here and usually, thinking that since this rehabilitation stuff is the best they can do, then it must be good enough. I don't know what logical fallacy this is, but it's probably the mother of all logical fallacies: I think X therefore I am right about X because me thinking X is the best I can do.
I had a really hard lesson over this in the last 2 years. I have improved considerably. 2 years ago, I was bedbound. Mainly because of out-of-control POTS, which has improved a lot since. But even with this, I was much better on several aspects of ME/CFS than I had been the year before. Mainly in odd neurological symptoms, sound intolerance, and so on. I was able to hold basic conversations for the first time in probably 4-5 years.
Since then I have slowly improved, but it only made it so obvious just how hard it is to estimate those things. At some point I used to think I was maybe at a 20-30% range of overall capacity, but seeing how much I improved since then, and how much more there is to improve, made it very clear how this 20-30% range was ridiculously over-inflated, how it was more of a 5-6% range. There's too much to consider, it's like trying to guess the number of items in a jar when there are hundreds of thousands of them, and you can only view them from a single (misleading) angle. There's just no possible accuracy here.
It's basically unrealistic to guesstimate something as complex like this on a limited, and not even linear, single digit scale. It just flat out out doesn't work. There has to be metrics, standards and objective measures to compare to. Even the simple joke of using a banana for scale makes most size guesstimates more reliable than any standard health questionnaire I have seen applied to us.
What health care professionals don't understand is that this isn't a problem for us, it's a problem, period. It's irreconcilable. There is no statistical analysis that can turn this mess of wildly inaccurate guesstimates into real practical numbers. They end up being so inaccurate in many cases it's actually worse than not trying to do that. Because they always do the thing where if the numbers look good, they are important and accurate, and if not, well they just have to figure out how to get the numbers just right. Whatever the numbers mean, which is usually both a number of unrelated things, and nothing at all. It just doesn't work like that at all.
But what it means more than anything is that none of those studies are reliable. Straight up not at all. They are not asking valid questions, making anything that comes after, analysis, interpretation, and so on, entirely arbitrary and useless for the most part.
What they are trying to do is the equivalent of doing chemistry without a reliable thermometer. It's just not possible. They could instead try to train a bunch of assistants at guessing the temperature of things by touch, and it would be exactly as useful as how questionnaires are misused in health care. They could show how most of the assistants usually have the same rough guesstimate ranges, and it still doesn't matter. They can show how multiple guesstimates made by the same person also tend to cluster near the same value, and it still doesn't matter: not accurate.
The root cause for much of this is something they will have to let go eventually: they confuse that the best they can do must be good enough, just because it's the best they can do. No, it's not. Especially not this. They even do the same thing with treatments that they poorly assess, here and usually, thinking that since this rehabilitation stuff is the best they can do, then it must be good enough. I don't know what logical fallacy this is, but it's probably the mother of all logical fallacies: I think X therefore I am right about X because me thinking X is the best I can do.
who is he?
Utsikt
Senior Member (Voting Rights)
Really nice and competent guy that has been vocal about Norway’s failure to address the pandemic for many years.
https://www.rwhite.no/publications.html
Kalliope
Senior Member (Voting Rights)
I think he is Australian. He has a PhD in biostatistics from Harvard and is now working at the Norwegian Institute for Public Health (yes, that institute! With Flottorp and co..). He has written several superb opinion pieces and given several interviews on Long Covid and has published research into it as well. Great guy with scientific principles! You can connect with him on Bluesky.
Utsikt
Senior Member (Voting Rights)
Andy
Senior Member (Voting rights)
"Trial By Error: Pushback on “Brief Outpatient Rehab” Trial for Long Covid from Norwegian Ideological Brigades
I often find myself responding to crap studies–such as a Norwegian study called “Brief Outpatient Rehabilitation Program for Post–COVID-19 Condition: A Randomized Clinical Trial,” from Nerli et al., published last December by JAMA Network Open. The senior author was Professor Vegard Wyller, the dean of the Norwegian wing of the CBT/GET/Lightning Process ideological brigades. The trial was as bad as one would expect, given its provenance. (Here’s my post about it.)
It is refreshing when other academics issue their own challenges to the kinds of self-evident methodological lapses that mar this study and so much of this research. Richard Aubrey White, a Harvard-trained biostatistician and a researcher at the Norwegian Institute of Public Health (NIPH), has just published a tough take-down of Nerli et al.—to which the lead author has responded with more of the usual blah blah.
The article appeared in Forskning.no, an online publication focused on news about Norwegian and international research, and includes a note that White is not writing on behalf of his employer. (NIPH has been a hotbed of support for the so-called “biopsychosocial” paradigm, so White’s opinion might be unpopular in some quarters.)
White’s critique—called “Promising treatment for long covid without evidence”–highlights similar issues to those I raised. (I am reliant on Google Translate, so don’t hold me responsible for any mistranslations.)"
Utsikt
Senior Member (Voting Rights)
Thank you for calling out NIPH as well! They probably do not care, but at least we know that their lunacy is being observed from the outside.
It's stuff like this that makes it all so... insane. No one in their right mind would ever think such a thing, let alone say it. Results from a single excessively biased study may, in some isolated cases, seem promising, but not for decades, not literally after decades of already offering this exact type of treatment. And, still, no one in their right mind should actually think that it's a good idea to offer some treatment based on being promising on the basis of a single highly biased pilot study, unless that study is truly groundbreaking.
And this is about as groundbreaking as a feather in the wind. It will not break any ground. It will barely sweep a few dust motes before it gets blown by the wind.
The behavior of the medical professionals and its institutions is so out of touch with what they normally do when they take an issue seriously. Most of them would recoil in horror at such suggestions when it isn't about something that has been exempted from the most minimal standards.
It's genuinely insane behavior. And yet it's happening quite rationally, involving people who do know better, and institutions who are supposed to guard against this. And yet they literally all fail miserably at the most basic level. Which can only mean that:
https://en.wikipedia.org/wiki/The_purpose_of_a_system_is_what_it_does
No one seems to think about what it means for such exemptions to become commonplace, how degrading standards in how place erodes them everywhere, because then it becomes a single mental flip to simply turn off all their normal training. It's the same slippery slope that starts with dehumanizing a few people, then some more, then a lot more, then literally everyone can be deprived of basic rights and protections.
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Cort has blogged about this trial: The Big Long COVID Neuroplasticity Trial: Did it Work?
As we've frequently noted, the model is incoherent.
Let's leave aside the development of post-infection syndromes that follow asymptomatic acute infections, ie there is never any initiating sickness behaviour to kick things off.
"Sickness behaviour" including fatigue and flu-like symptoms, is emphasised as entirely driven by the brain. This is framed as self- and community-preserving, with implied evolutionary development.
Then the infection is cleared and the brain now predicts all good: "I’m going to enjoy myself on a walk". But symptoms occur instead (fatigue, pain). Remember, we've established that the brain alone is responsible for producing these symptoms.
The brain is surprised by this turn of events (that it has caused) and sends out unconscious alarms (fight or flight), which causes more of these symptoms.
The brain is locked into this alarm / threat state, but this can be treated by neuroplasticity / brain retraining, teaching the brain that it is safe.
---
So, to summarise the summary: the brain predicts everything is fine, but then says it isn't, despite this prediction. It sends out alarms which presumably means that it is absolutely no longer predicting that everything is fine. But despite at the same time predicting everything is great and everything is really terrible, gets locked in to some diagram with circular arrows, that does... stuff. But we can train you out of it, you just have to believe.
As we've frequently noted, the model is incoherent.
Let's leave aside the development of post-infection syndromes that follow asymptomatic acute infections, ie there is never any initiating sickness behaviour to kick things off.
"Sickness behaviour" including fatigue and flu-like symptoms, is emphasised as entirely driven by the brain. This is framed as self- and community-preserving, with implied evolutionary development.
Then the infection is cleared and the brain now predicts all good: "I’m going to enjoy myself on a walk". But symptoms occur instead (fatigue, pain). Remember, we've established that the brain alone is responsible for producing these symptoms.
The brain is surprised by this turn of events (that it has caused) and sends out unconscious alarms (fight or flight), which causes more of these symptoms.
The brain is locked into this alarm / threat state, but this can be treated by neuroplasticity / brain retraining, teaching the brain that it is safe.
---
So, to summarise the summary: the brain predicts everything is fine, but then says it isn't, despite this prediction. It sends out alarms which presumably means that it is absolutely no longer predicting that everything is fine. But despite at the same time predicting everything is great and everything is really terrible, gets locked in to some diagram with circular arrows, that does... stuff. But we can train you out of it, you just have to believe.
Chandelier
Senior Member (Voting Rights)
You had me at:
Now shut up and take my money!
Theresa
Established Member (Voting Rights)
Or is it that the brain predicts it isn't fine and sends out the danger signals while according to the bps theory the body has recovered but the signals of now being ok are overridden by the mistaken topdown signal that there is still something wrong? Some people then add in the extra step about the brain getting confused. Either way there doesn't seem to be any way to "retrain" it by changing conscious thought and there is the incoherent situation that the person thinks they are better but their brain thinks differently.
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Yeah and regardless of whether the brain is predicting goodness or badness, the whole progression is still incoherent —
A fight/flight response should be supporting expending more energy and reducing pain perception, ie alert but much more physically capable — the adrenaline rush familiar to us all.
But instead, apparently this fight/flight response leads to the need for a cup of tea and a lie down.
A fight/flight response should be supporting expending more energy and reducing pain perception, ie alert but much more physically capable — the adrenaline rush familiar to us all.
But instead, apparently this fight/flight response leads to the need for a cup of tea and a lie down.
Andy
Senior Member (Voting rights)
Arnie Pye
Senior Member (Voting Rights)
*This is just a tongue-in-cheek response*
If I was ever in danger from anything at all, and my body produced a fight/flight response that made me lie down and ask my husband for a cup of tea I think I would probably just die.
As @SNT Gatchaman said, this is totally incoherent.
And another thought just occurred ... This suggests that fight/flight is a more sophisticated response than I thought, and can have multiple outcomes. In other words, if I get a virus that makes me ill my fight/flight response will make me lie down and ask for tea. If someone stabs me I will lie down and scream and forget about the tea. In another emergency situation I'll make a phone call to the police, and so on.
The whole point of fight/flight is that people don't have the time or brain power for multiple outcomes. It should just make them run away. That is what it is for.
Fight/flight and the production of adrenaline is not relevant to people getting flu at all! Getting sick makes people slow down.
If I was ever in danger from anything at all, and my body produced a fight/flight response that made me lie down and ask my husband for a cup of tea I think I would probably just die.
As @SNT Gatchaman said, this is totally incoherent.
And another thought just occurred ... This suggests that fight/flight is a more sophisticated response than I thought, and can have multiple outcomes. In other words, if I get a virus that makes me ill my fight/flight response will make me lie down and ask for tea. If someone stabs me I will lie down and scream and forget about the tea. In another emergency situation I'll make a phone call to the police, and so on.
The whole point of fight/flight is that people don't have the time or brain power for multiple outcomes. It should just make them run away. That is what it is for.
Fight/flight and the production of adrenaline is not relevant to people getting flu at all! Getting sick makes people slow down.
Chandelier
Senior Member (Voting Rights)
Wouldn‘t that be explained away as the freeze part of the fight-flight-or-freeze response?
