I think people do not respect psychosomatic symptoms and that setting an intention and showing your body “we can do it” can address psychosomatic symptoms. This was part of me recovering from depression. Sometimes there will be other reasons you are sick, or sometimes that will not address your real need driving the psychosomatic symptoms.
The fact that some physical symptoms are psychological in origin doesn’t make them fake or less important. They just need to be treated in different way, often by treating the whole person, changing intolerable life circumstances, or by conquering a fear.
Great essay, and I hope you continue to feel better!
Reminds me a lot of similar things people report with back pain. The phenomenon of “central sensitization” involves becoming heightened to all sorts of minor signals from your nervous system, which can keep the pain cycle going; in contrast, sometimes resolutely deciding to do stuff (not necessarily “pushing through” pain, but also not being overly protective) can help symptoms. I resonated a lot with your description of constantly monitoring health symptoms, etc There’s so much we don’t understand about chronic issues.
Thank you for this kind and thoughtful comment. I am mulling your note on "pushing through," as I've been already trying to understand what language best describes the approach I've been taking. I do find the "pushing through" concept to be motivating to me and to accurately describe my experience, but perhaps it's worth qualifying what that has looked like for me - specifically that the challenging aspects of the experience (pain/fatigue/fear) tend to yield throughout the activity, as opposed to worsening. More to think about as I'm planning another post where I'll write more about the tack I've taken through this recovery process and hope to communicate this aspect well.
Completely unrelated but I've been interested in learning more about what's going on in academic cognitive science / AI research, and your recent blog posts look very interesting! I subscribed and look forward to reading.
Here's an extra n=1: I read your article one week ago, in a coffee shop. Inspired by it, I marched home (walking with a backpack at full speed), for about 1 hour and 20 minutes. No issues, felt good. Next day, I lifted weights, for an hour, which I haven't done in one year. And so on. One week later, still feeling good.
Previously, I had PEM, fatigue and brain fog, for about 1.5 years. I initially had other symptoms, but those went away eventually and I was left with these three.
Yes!!! I am so stoked to hear this! I hope you continue feeling better and better, and would be happy to hear any updates as time goes on.
FWIW: it's now three weeks out for me and things keep improving - still feeling good, ramping up exercise, and the lingering fears I mentioned at the end of the essay are basically no longer part of my experience.
By the way, I found an interesting (preprint) paper about how our bodies might be going from “energy” at mitochondria level to "energy” (or fatigue) at body level: https://osf.io/preprints/osf/ekj54_v3 via @Martin Picard
"It’s hard to describe. My felt experience of making health-related decisions is one of deep, complex uncertainty. As if I am dealing with a tangled ball of thoughts and feelings that spans multiple miles, so large that I cannot bring it into view and cannot think straight about it. The main component of the ball is fear, which suffuses everything."
Damn, this hit me. Can 1000% relate with all the health stuff ive been dealing with this past year and it's really hard to put into words. This nervous system stuff is really no joke!! Stoked to hear you're slaying the demon and very excited to hear how progress goes
I very much appreciated the parts like "ended up walking a fair amount". This is fitness content I can relate to!
I don't think I've had exactly the kind of post-viral fatigue you're talking about, but I definitely find that doing exercise helps to shift a head cold better than just resting through it.
Clicked for the arboretum waterfront trail, stayed for the pink send. Which SBP??? I don't have chronic pain and would rather die than run six miles so respect
Yeah, this is very dangerous. There are indeed stories where it somehow resets the body (which doesn't mean that the fatigue and other symptoms were fake). But there are also plenty of stories where people end up bedbound with (very) severe ME/CFS after extreme overexertion. That is a condition you do NOT want yourself, or want to have in your conscience.
Also, there ARE clinical diagnostic criteria distinguishing ME/CFS from post-viral/idiopathic chronic fatigue, such as the International Consensus Criteria
Graded Exercise Therapy is also the lowest-scoring therapy with highest harm rates in this re-analysis I did of a survey (n=4000 LC & ME /CFS patients). Yes a patient survey will have its biases but there's a real signal here:
Thanks for the comment. My primary intention here was to report accurately on my own story, but also I would not want to mislead anyone, so I take these critiques seriously.
On the clinical diagnostic criteria in particular, I've updated my language as follows: "Furthermore, post-viral fatigue from mono and post-viral fatigue from COVID are not clinically distinguishable - they share symptoms, mechanisms, and even treatment recommendations." That's the actual claim I wished to make.
On the GET result: In part I worry about selection bias as you mention, but also, I don't feel confident that my personal approach maps well to the styles of "GET" that a survey respondent might have tried. My own story has a lot of complexity - long periods of rest, long periods of gradually increasing exercise while being sensitive to symptoms and ramping down often, and then the recent periods of being less sensitive to symptoms. The whole time I was operating based on my own judgements and my own collected evidence about my physical abilities, as opposed to following a set schedule. So I take these studies seriously, but the resulting update to my personal risk models is limited.
While PEM risk was on my mind when I went on the run, I was also weighing the evidence I had collected of my personal exercise tolerance, and the significant potential rewards of proving certain kinds of symptoms to be surmountable. On reflection, I still believe that deciding to do the run was a reasonable choice, though it had its risks. As such, and given that I included all of the relevant personal context, I do not feel that I'm misleading people by sharing my story.
I'm still mulling if there's some extra caveat to include and what that would look like, but haven't settled on anything yet, and provisionally am fine just saying "here's the complete story, take what you will" and sticking with the current caveats.
With all that said, I still have a fair amount of uncertainty, so am open to further suggestions or disagreements.
> That is a condition you do NOT want yourself, or want to have in your conscience.
I completely agree and for that reason wish to stay open-minded and to keep learning.
Thanks for the good faith reply and the update🙏🏻 Fair point on your approach being different from GET (even though I still think you took a big risk).
If you wish to dive more into the science, I think you'll find that the actual empirical basis for those false alarm/psychosomatic theories is remarkably thin/absent. A lot of citation circles and shoddy methodology. And actually, even 'placebo' is remarkably weak and of limited scope.
Best of luck to you and your health journey in any case!
I think people do not respect psychosomatic symptoms and that setting an intention and showing your body “we can do it” can address psychosomatic symptoms. This was part of me recovering from depression. Sometimes there will be other reasons you are sick, or sometimes that will not address your real need driving the psychosomatic symptoms.
The fact that some physical symptoms are psychological in origin doesn’t make them fake or less important. They just need to be treated in different way, often by treating the whole person, changing intolerable life circumstances, or by conquering a fear.
Great essay, and I hope you continue to feel better!
Reminds me a lot of similar things people report with back pain. The phenomenon of “central sensitization” involves becoming heightened to all sorts of minor signals from your nervous system, which can keep the pain cycle going; in contrast, sometimes resolutely deciding to do stuff (not necessarily “pushing through” pain, but also not being overly protective) can help symptoms. I resonated a lot with your description of constantly monitoring health symptoms, etc There’s so much we don’t understand about chronic issues.
Thank you for this kind and thoughtful comment. I am mulling your note on "pushing through," as I've been already trying to understand what language best describes the approach I've been taking. I do find the "pushing through" concept to be motivating to me and to accurately describe my experience, but perhaps it's worth qualifying what that has looked like for me - specifically that the challenging aspects of the experience (pain/fatigue/fear) tend to yield throughout the activity, as opposed to worsening. More to think about as I'm planning another post where I'll write more about the tack I've taken through this recovery process and hope to communicate this aspect well.
Completely unrelated but I've been interested in learning more about what's going on in academic cognitive science / AI research, and your recent blog posts look very interesting! I subscribed and look forward to reading.
Here's an extra n=1: I read your article one week ago, in a coffee shop. Inspired by it, I marched home (walking with a backpack at full speed), for about 1 hour and 20 minutes. No issues, felt good. Next day, I lifted weights, for an hour, which I haven't done in one year. And so on. One week later, still feeling good.
Previously, I had PEM, fatigue and brain fog, for about 1.5 years. I initially had other symptoms, but those went away eventually and I was left with these three.
So thank you for the inspiration!
Yes!!! I am so stoked to hear this! I hope you continue feeling better and better, and would be happy to hear any updates as time goes on.
FWIW: it's now three weeks out for me and things keep improving - still feeling good, ramping up exercise, and the lingering fears I mentioned at the end of the essay are basically no longer part of my experience.
By the way, I found an interesting (preprint) paper about how our bodies might be going from “energy” at mitochondria level to "energy” (or fatigue) at body level: https://osf.io/preprints/osf/ekj54_v3 via @Martin Picard
Final paper coming soon
Thanks Roland for the pointer. I read the abstract, may read more soon and excited to see the final paper when it's out.
"It’s hard to describe. My felt experience of making health-related decisions is one of deep, complex uncertainty. As if I am dealing with a tangled ball of thoughts and feelings that spans multiple miles, so large that I cannot bring it into view and cannot think straight about it. The main component of the ball is fear, which suffuses everything."
Damn, this hit me. Can 1000% relate with all the health stuff ive been dealing with this past year and it's really hard to put into words. This nervous system stuff is really no joke!! Stoked to hear you're slaying the demon and very excited to hear how progress goes
I very much appreciated the parts like "ended up walking a fair amount". This is fitness content I can relate to!
I don't think I've had exactly the kind of post-viral fatigue you're talking about, but I definitely find that doing exercise helps to shift a head cold better than just resting through it.
Clicked for the arboretum waterfront trail, stayed for the pink send. Which SBP??? I don't have chronic pain and would rather die than run six miles so respect
SBP Poplar! Here's the location if you wanna try it :) https://imgur.com/a/etfbhC2
This is an amazing story! Thank you for writing about your experience and congrats on pushing through
Thank you Maia!
Wow bravo, thanks for sharing. What a way to capture the fear spirals associated with deciding when to do more exercise. I relate personally
I wonder if some version of this would work for ADHD
Yeah, this is very dangerous. There are indeed stories where it somehow resets the body (which doesn't mean that the fatigue and other symptoms were fake). But there are also plenty of stories where people end up bedbound with (very) severe ME/CFS after extreme overexertion. That is a condition you do NOT want yourself, or want to have in your conscience.
Also, there ARE clinical diagnostic criteria distinguishing ME/CFS from post-viral/idiopathic chronic fatigue, such as the International Consensus Criteria
https://pmc.ncbi.nlm.nih.gov/articles/PMC3427890/.
Graded Exercise Therapy is also the lowest-scoring therapy with highest harm rates in this re-analysis I did of a survey (n=4000 LC & ME /CFS patients). Yes a patient survey will have its biases but there's a real signal here:
https://viralpersistence.substack.com/p/re-analyzing-the-treatme-survey?utm_source=share&utm_medium=android&r=6rc6a
Thanks for the comment. My primary intention here was to report accurately on my own story, but also I would not want to mislead anyone, so I take these critiques seriously.
On the clinical diagnostic criteria in particular, I've updated my language as follows: "Furthermore, post-viral fatigue from mono and post-viral fatigue from COVID are not clinically distinguishable - they share symptoms, mechanisms, and even treatment recommendations." That's the actual claim I wished to make.
On the GET result: In part I worry about selection bias as you mention, but also, I don't feel confident that my personal approach maps well to the styles of "GET" that a survey respondent might have tried. My own story has a lot of complexity - long periods of rest, long periods of gradually increasing exercise while being sensitive to symptoms and ramping down often, and then the recent periods of being less sensitive to symptoms. The whole time I was operating based on my own judgements and my own collected evidence about my physical abilities, as opposed to following a set schedule. So I take these studies seriously, but the resulting update to my personal risk models is limited.
While PEM risk was on my mind when I went on the run, I was also weighing the evidence I had collected of my personal exercise tolerance, and the significant potential rewards of proving certain kinds of symptoms to be surmountable. On reflection, I still believe that deciding to do the run was a reasonable choice, though it had its risks. As such, and given that I included all of the relevant personal context, I do not feel that I'm misleading people by sharing my story.
I'm still mulling if there's some extra caveat to include and what that would look like, but haven't settled on anything yet, and provisionally am fine just saying "here's the complete story, take what you will" and sticking with the current caveats.
With all that said, I still have a fair amount of uncertainty, so am open to further suggestions or disagreements.
> That is a condition you do NOT want yourself, or want to have in your conscience.
I completely agree and for that reason wish to stay open-minded and to keep learning.
Thanks for the good faith reply and the update🙏🏻 Fair point on your approach being different from GET (even though I still think you took a big risk).
If you wish to dive more into the science, I think you'll find that the actual empirical basis for those false alarm/psychosomatic theories is remarkably thin/absent. A lot of citation circles and shoddy methodology. And actually, even 'placebo' is remarkably weak and of limited scope.
Best of luck to you and your health journey in any case!