This jives very well with my experience of fibromyalgia, which I'm sure has some biological component, but it mostly settles down when I choose to just live and stop feeding it attention and push through it. (As with OP, this is not a recommendation to do this yourself! Your mileage may vary significantly!) Your nervous system is not an omnipotent panopticon. It's just a friend that's, if you forgive some anthropomorphizing, trying to understand the best it can what's going on by using imperfect information, including memory and context clues.
Only partially related tangent incoming: I think it's almost meaningless to use the word "real" when it comes to chronic body dysfunctions, even seemingly straightforward "physical" things like low back pain, which research has shown has no functional correlation between reported pain and imaging results. There's also some research on stretching to your limit that shows a strong cognitive-somatic component; your body tries to protect you from even getting close to your physical limit until you "prove" to it that it's safe. It's much more explanatory to treat the body as an integrated system where all experience ultimately is produced by the nervous system, and it can have better or worse mapping to the biological "realities" of yourself and the physical "realities" of the outside world. So all experience is real; it's just a matter of what's useful.
Yes, people get confused about mind-body interaction and what the "mind" is (some people conceptualize "mind" as just your conscious thoughts). So I prefer to use the term brain or nervous system instead of "mind".
To be a bit more precise RE Back pain , I think what studies show on back pain is a large fraction of cases (40%?) have no identifiable cause on imaging.
As you qualified in your post, I think it's worth reiterating that "pushing through" may be very dangerous for some subset of people, causing a decline in "baseline" that could last weeks or months or be permanent. It's my understanding that, after exertion, people should be vigilant for heightened symptoms that could start 2-3 days after the exertion and maybe should at least wait for those symptoms to fully and completely subside before further experimentation.
"To the surprise of doctors and patients alike, accumulating research suggests that most chronic back pain isn't actually the result of illness or injury. Study after study indicates instead that back pain is very often caused by our thoughts, feelings, and resulting behaviors"
David, this is great! Your writing style is engaging too. (I've realized my writing is a quite dry recently and am trying to find a voice that is engaging but also true to who I am.)
I'm going to write a response to your essay to go into detail - because I think your story illuminates a few difficulties people have with the theory. Additionally, I think it's important to acknowledge other likely causes for Long COVID fatigue explicitly, like persistent virus and Epstein-Barr reactivation.
Here's three points I'd like to make here:
1. "Five months into long COVID when it was nearly gone, I got covid again. I got Paxlovid this time, which knocked it right back [and a month later long COVID was gone]".
-- It's quite possible you had persistent virus that your immune system wasn't removing. The combination of the 2nd infection (which ramped your immune system back up) and the Paxlovid may have wiped out the persistent virus. (Note: Paxlovid is being studied as a treatment for LC at both Stanford and Yale). So, it's quite possible that GET + CBT or "Just fuck it and push through" would not have helped you at all at that time. In fact, it may have backfired, causing "post exertional malaise" due to the body/brain saying "STOP, I'M TRYING TO FIGHT THIS PERSISTENT VIRUS". Since I wrote my piece on the "false alarm theory", I've updated my model of long COVID. When I wrote the piece, I thought maybe 75% of long COVID cases could be mostly explained by the false alarm theory or some similar psychosomatic/neurological theory. However, I now think that ~50%+ of cases are caused by persistent virus and or latent virus activation (Epstein-Barr Virus). For those people, GET+CBT is not the solution (although it may help on the margin). Furthermore, "pushing through" or any form of overexertion may backfire. I doubt pushing through or overexertion could cause permanent damage or worsen LC (as some claim), but it's not going to be the best solution.
2. "So I ran six miles. And my body kept saying “you are exhausted, you can’t do this,” and I said fuck you, I’m doing it."
-- This is very interesting. I think your overall theory makes sense. If you felt the fatigue pervasively throughout your body and mentally - that was probably the central governor. I had a similar experience, but with walking, not hiking. About 15 months into my LC ordeal, I was somewhat recovered, but I noticed that walking a few blocks left me super fatigued. At the time, I was running a mile maybe once a week (prior to LC I ran 5 miles 2-3 times a week). Oddly enough, I noticed walking a 1/4 mile left me more fatigued than running a mile (although both wore me down quite a bit). The effect was very striking and consistent. My theory about this is that because walking was the only exercise I did during the first year of LC, my brain developed the notion that walking is a very strenuous and fatiguing activity, requiring a lot of rest afterwards. The same association was not made with running, however. It feels like a bit of a crackpot explanation, though. An alternative explanation and perhaps more plausible explanation is that running generates endorphins and other things which offset the fatigue.
3. "This is an N=1 report. N=2 if you count Dan Elton (but he also applied psychological treatments and I didn’t). N=4 "
-- There are many stories of GET working on the internet -- I can dig up at least 3 or 4 easily. I've also had two people tell me my article helped them with their LC recovery. There also stories of it not working and some claim it makes their condition worse. There are also stories of people making very rapid recoveries from severe chronic fatigue either by "pushing through" or using the "lightning process". The "lightning process" is a bit shrouded in secrecy, but basically, from what I can tell, it's a series of techniques for rapidly building up confidence (using neurolinguistic programming methods) while also learning how to reduce your stress/anxiety response (using breathing and meditation, etc). The goal of the lightning process (LP) is to enable people to develop confidence so they are able to push through the fatigue sensations and anxious voices/narratives in their head telling them to stop. It doesn't work for everyone, but a sizable fraction of people who try it undergo a very fast recovery (like within a week or month). There is even an RCT on it, in youth. (Of course, it must be emphasized that LP has only been studied for CFS, not LC, and LC that is caused by persistent virus should be considered a separate clinical entity.) A good place for LC recovery stories using GET is here: https://recoverynorway.org/ and you can also read https://www.theguardian.com/society/2016/feb/15/it-was-like-being-buried-alive-victim-of-chronic-fatigue-syndrome for a rather dramatic story of GET recovery.
This piece was meant just to be "here's a cool thing that happened today, and here's an interesting theory about why." So I deliberately didn't go into any of what I know about long covid, which would inevitably be incomplete and maybe inaccurate, as I am only a causal, unqualified research reader myself. FWIW, my casual reading aligns with your noting that long covid appears to be several different conditions with different causes, for which different treatments will probably turn out to be optimal.
The observation that a repeat infection plus Paxlovid can knock out a persistent reservoir is interesting and may be important. In my case, the LC was already pretty much gone before that, so it's quite likely also to be a coincidence.
> I noticed walking a 1/4 mile left me more fatigued than running a mile
I've noticed this also! Your possible explanation makes sense.
The oxygen theory makes me wonder if some of the Buteyko method training would be helpful for dealing with some instances of long COVID, as a huge part of it is about training you to breathe less and thus feel less need les for oxygen.
I'm... a little skeptical of their general claims of over-breathing being the cause of all problems, but as with a lot of slightly weird things, having a wrong theory about the world can make you figure out things that other people with more sensible goals wouldn't have bothered.
That's interesting... it might relate with the finding of mitochondrial dysfunction in many cases of long covid.
Funnily enough, I was reminded about a week ago of the luck-based medicine post you link. I first read it when she posted it two years ago, and mentally bookmarked it as interesting because the specifics seemed like they *might* be relevant to my *other* fatigue syndrome, which I mentioned in passing in this post. I've now got *that* one nailed down as food intolerances, which an exclusion diet has reliably fixed. (I'll probably blog about that eventually too.) Anyway, on the strength of her post and then a bunch of follow-on reading, I ordered some Boswellia. I feel major identity conflict in taking a herbal supplement! But conceivably it would let me eat the things I currently have to exclude, which would be welcome.
Having Covid is awful. I was unable to learn how awful it is until I got properly sick with it last winter, and then I realized I don't want that to happen again.
I don't think I've had long Covid, or at least never thought of that as a possibility. I've had life-long problems with fatigue though, which have gotten better since a month ago. A month ago I started taking an SSRI; may be because of that.
I'm glad to hear that the curse plus the Paxlovid did the job, especially since my spouse and I are both on the Paxlovid routine as I squeak.
However, having been through all of the comments I have found one error, right at the end, that was still uncaught. The curse is uttered, not by Wormtongue, but by Gandalf, to Wormtongue, who had been doing the long-form curse on Theoden. This way it makes your point more strongly. Hopefully the Tolkien police are too busy having their elevenses to have noticed.
You’ve basically summed up how I healed my chronic fatigue syndrome after almost 10 years. The brain and in particular the limbic system becomes cross-wired and sees energy expenditure as a threat and reproduces symptoms from the initial infection. We can rewire the brain when we do things without fear (just as you did with your exercise) so it can click back into its usual programming. Brain retraining using the program DNRS helped me heal this! Healing the nervous system also allows the body to heal and move out of a sympathetic or dorsal vagal into parasympathetic healing. The mind-body connection is fascinating and amazing
Having read some of the CFS controversy, I think I don't trust clinical trials in this area that rely exclusively on patient self-report, and don't use actigraphy or some other more objective measure of recovery.
One thing that might be happening is that CBT encourages patients to *say* they're feeling better, when actually they are not getting better. (There are hints that, worse, CBT might be making them sicker and more disabled than no treatment at all). So you'd like to see some measure of recovery that isnt self report.
#
(This is conceptually related to the whole "placebo effect" discussion; you;'ld like to distinguish between (a) treatment actually makes patients better (b) a bunch of patients randomly get better anyway, but treatment makes no difference (c) "experimenter pleasing" and and other instrumentation problems, where treatment has an effect on your experimental measure but the patient isn';t getting better.
How you handle participant drop-out also matters (see "Intention to treat" experimental protocols).
If a large proportion of patients drop out because (a) they are too sick to follow the experimental protocol (b) they think the experimental protocol is making them sicker; and you exclude these from the criterion group, you get a spurious effect where the treatment seems to be working but isnt. (In reality: patients are recovering or not randomly, and you are failing to count the ones that didnt get better randomly)
I was at one point wondering whether to give a talk on research methods to our students that take the PACE trial as the central example of How Not to Design an Experiment.
My main takeaway was that the central governor theory does explain most physical needs (water, oxygen, food, etc.). And in most cases, the body is somewhat stingy with allocating resources, since its primary goal is to make sure you don't overexert yourself and die. So you can often push past what your body feels capable of, up to a point.
The book seems most applicable for athletes who are much more serious than I'll ever be, but I still enjoyed it.
So, I want to be clear - I did not invent the false alarm theory - as I explain at the top my post - it was Dr. Vergard Wyller. Dr. Paul Garner later elaborated it. (see the refenences in my post)
What I can take credit for, though, is writing about the connection to the central governor theory (CGT). Although even for that I can't fully take credit - I was explaining the "false alarm" theory to my friend Greg Fitzgerald, and he recommended the book "Endure". I read the book and immediately saw its relevance to Long COVID, including functional neurological disorder theories of Long COVID.
As a side note, Tim Noakes, a key researcher on CGT, has hypothesized severely broken CGT circuitry could explain *some* cases of chronic fatigue syndrome for which no "organic/biological" cause can be found.
One thing I'm a bit intrigued by is your comment "Long covid fatigue is also real, and not psychological or malingering or illusory" — which to me implies that 'psychological' conditions are not 'real', which gives me a hint of a dualistic boundary around 'biological' vs 'psychological'.
It seems that, because the world is deeply nebulous, to some extent all our perceptions are illusory — but there is a gradient from more to less fabricated, which makes it also a fabrication to differentiate between 'biological' and 'psychological'.
The fear from the demon you think you see under your bed is not different from the fear of being in tall buildings — both are perceptions that on some level you would disavow, but show up in very biological symptoms.
You may well have been thinking this — in which case I am reading too much into that sentence. If not, I'm curious where we differ here.
However, in general, the existence of marginal or intermediate phenomena doesn't negate the contextual usefulness of distinctions. That's true particularly if there are very clear cases of each side. Here, there is "broken leg," which is an unambiguously real medical condition, and "Koro" (disappearing penis disease, https://en.wikipedia.org/wiki/Koro_(disease)) which is an unambiguously "non-real," psychological condition.
We might, then, remodel the ontology as a continuum between "real" and "psychological." (Although there must be a better term to use here than "real"!)
In that case, long covid might be somewhere between the extremes, inasmuch as in many or most cases there are objective markers, but psychological stress seems to play a role, and psychological treatments are apparently sometimes helpful.
Thank you for the clarification. It seems we'd largely agree. I'd emphasize that when we are talking about the experiential aspect of these various conditions, which is what we very often care about (i.e. we care about a broken leg because we won't be able to walk on it in the future if it doesn't heal but also because it is really unpleasant right now), there seems to be always some level of ('psychological') fabrication. See accounts of individuals who can very precisely modulate their experience of pain.
As for my notes — my pleasure! You may not find them particularly new, as I'm largely applying an enactivist lens to this common problem, but at least it may be interesting :)
Some theories are that the human (mammalian) immune system has evolved to use information about your psychological state, in order to more effectively make decisions about how many calories to put into running the immune system. If these theories are true, the whole immunological vs psychological boundary breaks down, because the immune system isn't respecting those boundaries.
My management, with reference to certain research projects that aim at figuring out how biological immune systems work "The whole thing looks like one of those mechanisms those computer security people design."
Me: "There is probably a fundamental reason, for that, right...."
(Evolution plus adversarial competition between parasites and the organisms they infect)
The scientific literature on Chronic Fatigue is kind of like a series of cases studies in How Not To Do A Clinical Trial. So, it's interesting on Bad Methodology grounds.
Beyond declaring a bunch of studies to be outrageously bad, I don't have a strong opinion on what the hell CFS is.
But a core characteristic seems to be that Graded Exercize Therapy / Cognitive Behavioral Therapy techniques just don't work for whatever the hell it is.
I don't know man. Radically different conditions that have similar symptoms, but don't respond to treatment the same way?
====
Related, in the sense that clinical trials for CBT for medically unexplained symptoms are rubbish: we know from the CODES clinical trial that CBT for Non-Epileptic Seizures doesn't reduce seizure frequency. SO whatever the hell they are, CBT doesn't work for them.
Do you have any thoughts on the PACE trial? It has some minor issues and they changed some of the the criteria for success mid-flight, but I think it was pretty well run overall. There was a good follow-up on it too.
Yeah, it's very fascinating how much fibromyalgia and CFS (whatever they are) feel ~so much~ like kissing cousins, but we do know halfway decently well that they respond differently to GET/CBT.
This jives very well with my experience of fibromyalgia, which I'm sure has some biological component, but it mostly settles down when I choose to just live and stop feeding it attention and push through it. (As with OP, this is not a recommendation to do this yourself! Your mileage may vary significantly!) Your nervous system is not an omnipotent panopticon. It's just a friend that's, if you forgive some anthropomorphizing, trying to understand the best it can what's going on by using imperfect information, including memory and context clues.
Only partially related tangent incoming: I think it's almost meaningless to use the word "real" when it comes to chronic body dysfunctions, even seemingly straightforward "physical" things like low back pain, which research has shown has no functional correlation between reported pain and imaging results. There's also some research on stretching to your limit that shows a strong cognitive-somatic component; your body tries to protect you from even getting close to your physical limit until you "prove" to it that it's safe. It's much more explanatory to treat the body as an integrated system where all experience ultimately is produced by the nervous system, and it can have better or worse mapping to the biological "realities" of yourself and the physical "realities" of the outside world. So all experience is real; it's just a matter of what's useful.
Yes, people get confused about mind-body interaction and what the "mind" is (some people conceptualize "mind" as just your conscious thoughts). So I prefer to use the term brain or nervous system instead of "mind".
To be a bit more precise RE Back pain , I think what studies show on back pain is a large fraction of cases (40%?) have no identifiable cause on imaging.
You and others reading this might find this article on psychosomatic pain by my friend Steve Brynes interesting: https://www.lesswrong.com/posts/BgBJqPv5ogsX4fLka/the-mind-body-vicious-cycle-model-of-rsi-and-back-pain
Indeed! There's a growing body of head-scratching research on this topic. Here's one of the studies I'm referencing: https://pubmed.ncbi.nlm.nih.gov/30614517/
As you qualified in your post, I think it's worth reiterating that "pushing through" may be very dangerous for some subset of people, causing a decline in "baseline" that could last weeks or months or be permanent. It's my understanding that, after exertion, people should be vigilant for heightened symptoms that could start 2-3 days after the exertion and maybe should at least wait for those symptoms to fully and completely subside before further experimentation.
https://en.wikipedia.org/wiki/Post-exertional_malaise
https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-conditions.html#:~:text=*Post%2Dexertional%20malaise%20(PEM,for%20days%20or%20even%20weeks.
"To the surprise of doctors and patients alike, accumulating research suggests that most chronic back pain isn't actually the result of illness or injury. Study after study indicates instead that back pain is very often caused by our thoughts, feelings, and resulting behaviors"
David, this is great! Your writing style is engaging too. (I've realized my writing is a quite dry recently and am trying to find a voice that is engaging but also true to who I am.)
I'm going to write a response to your essay to go into detail - because I think your story illuminates a few difficulties people have with the theory. Additionally, I think it's important to acknowledge other likely causes for Long COVID fatigue explicitly, like persistent virus and Epstein-Barr reactivation.
Here's three points I'd like to make here:
1. "Five months into long COVID when it was nearly gone, I got covid again. I got Paxlovid this time, which knocked it right back [and a month later long COVID was gone]".
-- It's quite possible you had persistent virus that your immune system wasn't removing. The combination of the 2nd infection (which ramped your immune system back up) and the Paxlovid may have wiped out the persistent virus. (Note: Paxlovid is being studied as a treatment for LC at both Stanford and Yale). So, it's quite possible that GET + CBT or "Just fuck it and push through" would not have helped you at all at that time. In fact, it may have backfired, causing "post exertional malaise" due to the body/brain saying "STOP, I'M TRYING TO FIGHT THIS PERSISTENT VIRUS". Since I wrote my piece on the "false alarm theory", I've updated my model of long COVID. When I wrote the piece, I thought maybe 75% of long COVID cases could be mostly explained by the false alarm theory or some similar psychosomatic/neurological theory. However, I now think that ~50%+ of cases are caused by persistent virus and or latent virus activation (Epstein-Barr Virus). For those people, GET+CBT is not the solution (although it may help on the margin). Furthermore, "pushing through" or any form of overexertion may backfire. I doubt pushing through or overexertion could cause permanent damage or worsen LC (as some claim), but it's not going to be the best solution.
2. "So I ran six miles. And my body kept saying “you are exhausted, you can’t do this,” and I said fuck you, I’m doing it."
-- This is very interesting. I think your overall theory makes sense. If you felt the fatigue pervasively throughout your body and mentally - that was probably the central governor. I had a similar experience, but with walking, not hiking. About 15 months into my LC ordeal, I was somewhat recovered, but I noticed that walking a few blocks left me super fatigued. At the time, I was running a mile maybe once a week (prior to LC I ran 5 miles 2-3 times a week). Oddly enough, I noticed walking a 1/4 mile left me more fatigued than running a mile (although both wore me down quite a bit). The effect was very striking and consistent. My theory about this is that because walking was the only exercise I did during the first year of LC, my brain developed the notion that walking is a very strenuous and fatiguing activity, requiring a lot of rest afterwards. The same association was not made with running, however. It feels like a bit of a crackpot explanation, though. An alternative explanation and perhaps more plausible explanation is that running generates endorphins and other things which offset the fatigue.
3. "This is an N=1 report. N=2 if you count Dan Elton (but he also applied psychological treatments and I didn’t). N=4 "
-- There are many stories of GET working on the internet -- I can dig up at least 3 or 4 easily. I've also had two people tell me my article helped them with their LC recovery. There also stories of it not working and some claim it makes their condition worse. There are also stories of people making very rapid recoveries from severe chronic fatigue either by "pushing through" or using the "lightning process". The "lightning process" is a bit shrouded in secrecy, but basically, from what I can tell, it's a series of techniques for rapidly building up confidence (using neurolinguistic programming methods) while also learning how to reduce your stress/anxiety response (using breathing and meditation, etc). The goal of the lightning process (LP) is to enable people to develop confidence so they are able to push through the fatigue sensations and anxious voices/narratives in their head telling them to stop. It doesn't work for everyone, but a sizable fraction of people who try it undergo a very fast recovery (like within a week or month). There is even an RCT on it, in youth. (Of course, it must be emphasized that LP has only been studied for CFS, not LC, and LC that is caused by persistent virus should be considered a separate clinical entity.) A good place for LC recovery stories using GET is here: https://recoverynorway.org/ and you can also read https://www.theguardian.com/society/2016/feb/15/it-was-like-being-buried-alive-victim-of-chronic-fatigue-syndrome for a rather dramatic story of GET recovery.
Dan, thanks for the detailed reply!
This piece was meant just to be "here's a cool thing that happened today, and here's an interesting theory about why." So I deliberately didn't go into any of what I know about long covid, which would inevitably be incomplete and maybe inaccurate, as I am only a causal, unqualified research reader myself. FWIW, my casual reading aligns with your noting that long covid appears to be several different conditions with different causes, for which different treatments will probably turn out to be optimal.
The observation that a repeat infection plus Paxlovid can knock out a persistent reservoir is interesting and may be important. In my case, the LC was already pretty much gone before that, so it's quite likely also to be a coincidence.
> I noticed walking a 1/4 mile left me more fatigued than running a mile
I've noticed this also! Your possible explanation makes sense.
The oxygen theory makes me wonder if some of the Buteyko method training would be helpful for dealing with some instances of long COVID, as a huge part of it is about training you to breathe less and thus feel less need les for oxygen.
I'm... a little skeptical of their general claims of over-breathing being the cause of all problems, but as with a lot of slightly weird things, having a wrong theory about the world can make you figure out things that other people with more sensible goals wouldn't have bothered.
This is an extreme low-confidence theory and I'm mostly mentioning it to give people the possibility of luck-based medicine (https://acesounderglass.com/2022/10/13/my-resentful-story-of-becoming-a-medical-miracle/) working in their favour if it happens to be useful for them.
That's interesting... it might relate with the finding of mitochondrial dysfunction in many cases of long covid.
Funnily enough, I was reminded about a week ago of the luck-based medicine post you link. I first read it when she posted it two years ago, and mentally bookmarked it as interesting because the specifics seemed like they *might* be relevant to my *other* fatigue syndrome, which I mentioned in passing in this post. I've now got *that* one nailed down as food intolerances, which an exclusion diet has reliably fixed. (I'll probably blog about that eventually too.) Anyway, on the strength of her post and then a bunch of follow-on reading, I ordered some Boswellia. I feel major identity conflict in taking a herbal supplement! But conceivably it would let me eat the things I currently have to exclude, which would be welcome.
This seems to be an obvious domain for the application of metarational skills, which I see as a continuation of e.g. your light supplementation essay.
Having Covid is awful. I was unable to learn how awful it is until I got properly sick with it last winter, and then I realized I don't want that to happen again.
I don't think I've had long Covid, or at least never thought of that as a possibility. I've had life-long problems with fatigue though, which have gotten better since a month ago. A month ago I started taking an SSRI; may be because of that.
I'm glad to hear that the curse plus the Paxlovid did the job, especially since my spouse and I are both on the Paxlovid routine as I squeak.
However, having been through all of the comments I have found one error, right at the end, that was still uncaught. The curse is uttered, not by Wormtongue, but by Gandalf, to Wormtongue, who had been doing the long-form curse on Theoden. This way it makes your point more strongly. Hopefully the Tolkien police are too busy having their elevenses to have noticed.
ZD
Hi, Zér-mé, nice to see you here! Sorry to hear about your illness, and fingers crossed for a rapid Paxlovid-assisted recovery. 🤞
I’ve edited the text to make it clearer that the curse is spoken by Gandalf—thank you!
You’ve basically summed up how I healed my chronic fatigue syndrome after almost 10 years. The brain and in particular the limbic system becomes cross-wired and sees energy expenditure as a threat and reproduces symptoms from the initial infection. We can rewire the brain when we do things without fear (just as you did with your exercise) so it can click back into its usual programming. Brain retraining using the program DNRS helped me heal this! Healing the nervous system also allows the body to heal and move out of a sympathetic or dorsal vagal into parasympathetic healing. The mind-body connection is fascinating and amazing
Having read some of the CFS controversy, I think I don't trust clinical trials in this area that rely exclusively on patient self-report, and don't use actigraphy or some other more objective measure of recovery.
One thing that might be happening is that CBT encourages patients to *say* they're feeling better, when actually they are not getting better. (There are hints that, worse, CBT might be making them sicker and more disabled than no treatment at all). So you'd like to see some measure of recovery that isnt self report.
#
(This is conceptually related to the whole "placebo effect" discussion; you;'ld like to distinguish between (a) treatment actually makes patients better (b) a bunch of patients randomly get better anyway, but treatment makes no difference (c) "experimenter pleasing" and and other instrumentation problems, where treatment has an effect on your experimental measure but the patient isn';t getting better.
How you handle participant drop-out also matters (see "Intention to treat" experimental protocols).
If a large proportion of patients drop out because (a) they are too sick to follow the experimental protocol (b) they think the experimental protocol is making them sicker; and you exclude these from the criterion group, you get a spurious effect where the treatment seems to be working but isnt. (In reality: patients are recovering or not randomly, and you are failing to count the ones that didnt get better randomly)
I was at one point wondering whether to give a talk on research methods to our students that take the PACE trial as the central example of How Not to Design an Experiment.
I read this book last year. I'm no expert, but I thought it's a great summary of the latest research on various physical limits: https://www.amazon.com/Endure-Curiously-Elastic-Limits-Performance/dp/0062499866?ref=d6k_applink_bb_dls&dplnkId=33c9981d-832b-41c0-a838-549bc743ddb7
My main takeaway was that the central governor theory does explain most physical needs (water, oxygen, food, etc.). And in most cases, the body is somewhat stingy with allocating resources, since its primary goal is to make sure you don't overexert yourself and die. So you can often push past what your body feels capable of, up to a point.
The book seems most applicable for athletes who are much more serious than I'll ever be, but I still enjoyed it.
So, I want to be clear - I did not invent the false alarm theory - as I explain at the top my post - it was Dr. Vergard Wyller. Dr. Paul Garner later elaborated it. (see the refenences in my post)
What I can take credit for, though, is writing about the connection to the central governor theory (CGT). Although even for that I can't fully take credit - I was explaining the "false alarm" theory to my friend Greg Fitzgerald, and he recommended the book "Endure". I read the book and immediately saw its relevance to Long COVID, including functional neurological disorder theories of Long COVID.
As a side note, Tim Noakes, a key researcher on CGT, has hypothesized severely broken CGT circuitry could explain *some* cases of chronic fatigue syndrome for which no "organic/biological" cause can be found.
Happy to hear you feel better :)
One thing I'm a bit intrigued by is your comment "Long covid fatigue is also real, and not psychological or malingering or illusory" — which to me implies that 'psychological' conditions are not 'real', which gives me a hint of a dualistic boundary around 'biological' vs 'psychological'.
It seems that, because the world is deeply nebulous, to some extent all our perceptions are illusory — but there is a gradient from more to less fabricated, which makes it also a fabrication to differentiate between 'biological' and 'psychological'.
The fear from the demon you think you see under your bed is not different from the fear of being in tall buildings — both are perceptions that on some level you would disavow, but show up in very biological symptoms.
You may well have been thinking this — in which case I am reading too much into that sentence. If not, I'm curious where we differ here.
Hmm, yes, well, "real" is a highly dubious category (https://meaningness.com/against-really), and "psychological" is highly nebulous.
However, in general, the existence of marginal or intermediate phenomena doesn't negate the contextual usefulness of distinctions. That's true particularly if there are very clear cases of each side. Here, there is "broken leg," which is an unambiguously real medical condition, and "Koro" (disappearing penis disease, https://en.wikipedia.org/wiki/Koro_(disease)) which is an unambiguously "non-real," psychological condition.
We might, then, remodel the ontology as a continuum between "real" and "psychological." (Although there must be a better term to use here than "real"!)
In that case, long covid might be somewhere between the extremes, inasmuch as in many or most cases there are objective markers, but psychological stress seems to play a role, and psychological treatments are apparently sometimes helpful.
(This comment may be relevant: https://meaningness.substack.com/p/fake-fatigue-in-long-covid/comment/61560212)
By the way, I still have not read your notes on chronic pain, but they are on my short list now! Thank you very much for sending them.
Thank you for the clarification. It seems we'd largely agree. I'd emphasize that when we are talking about the experiential aspect of these various conditions, which is what we very often care about (i.e. we care about a broken leg because we won't be able to walk on it in the future if it doesn't heal but also because it is really unpleasant right now), there seems to be always some level of ('psychological') fabrication. See accounts of individuals who can very precisely modulate their experience of pain.
As for my notes — my pleasure! You may not find them particularly new, as I'm largely applying an enactivist lens to this common problem, but at least it may be interesting :)
Some theories are that the human (mammalian) immune system has evolved to use information about your psychological state, in order to more effectively make decisions about how many calories to put into running the immune system. If these theories are true, the whole immunological vs psychological boundary breaks down, because the immune system isn't respecting those boundaries.
Back when i worked for Microsoft Research...
My management, with reference to certain research projects that aim at figuring out how biological immune systems work "The whole thing looks like one of those mechanisms those computer security people design."
Me: "There is probably a fundamental reason, for that, right...."
(Evolution plus adversarial competition between parasites and the organisms they infect)
See also: Stephanie Forrest at University of New Mexico, of course.
And I think quietly to myself, "if those folks come up with a day zero exploit for human T cells that kills everybody, I am not going to be pleased."
Nice. I'm going to try this with hangover. Fuck you, hangover! (even though I know it's not lying)
I do hope you really are out of it.
And may I ask about your vaccination history?
Why? (Which axe are you grinding?)
I got vaccinated each time it was available.
The scientific literature on Chronic Fatigue is kind of like a series of cases studies in How Not To Do A Clinical Trial. So, it's interesting on Bad Methodology grounds.
Beyond declaring a bunch of studies to be outrageously bad, I don't have a strong opinion on what the hell CFS is.
But a core characteristic seems to be that Graded Exercize Therapy / Cognitive Behavioral Therapy techniques just don't work for whatever the hell it is.
I don't know man. Radically different conditions that have similar symptoms, but don't respond to treatment the same way?
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Related, in the sense that clinical trials for CBT for medically unexplained symptoms are rubbish: we know from the CODES clinical trial that CBT for Non-Epileptic Seizures doesn't reduce seizure frequency. SO whatever the hell they are, CBT doesn't work for them.
Do you have any thoughts on the PACE trial? It has some minor issues and they changed some of the the criteria for success mid-flight, but I think it was pretty well run overall. There was a good follow-up on it too.
Yeah, it's very fascinating how much fibromyalgia and CFS (whatever they are) feel ~so much~ like kissing cousins, but we do know halfway decently well that they respond differently to GET/CBT.