Hi Paul, I've been a long-time reader and follower of your work! I found it back around maybe 2008-ish because of my own chronic pain, and then I went to school to became a RMT from 2011-2013, and was grateful to have the background of reading your work to give me a critical and informed approach about the limitations of the current curriculum in massage therapy education.... based on that background I was actually pretty disappointed in the education. Anyway, I haven't read your stuff in a while (I had a baby in 2020 and have been busy parenting), but I'm now catching up with Project try everything. I have also tried a lot of stuff for my own chronic pain and IBS, and the diet piece has been very helpful for me. I did a deep dive into reading about dietary stuff in around 2014 and came across the work of Sarah Ballantyne, Phd and did a couple of rounds of the autoimmune paleo protocol that she developed - I warn you that it is quite an intense and difficult dietary protocol, but in my opinion totally worth it. It helped me pinpoint a few different foods that I'm sensitive to and generally up-level my health. I would say it reduced my pain by around 50%, which is huge! Her work is very well referenced and evidence-based and I think you would appreciate her very grounded science approach. Here is a great place to start: https://www.thepaleomom.com/what-is-leaky-gut-and-how-can-it-cause/
Thanks, Shaina. Sorry I took so long to respond here. (Holidays!) Delighted to hear that you are feeling significantly better, and thanks for the reading recommendation. I have mixed feelings about the leaky gut hypothesis, but I know that I need to update my knowledge before I say any more about it (and this is actually on my to-do list for my fibromyalgia article).
I’ve had the same intuition and some light documentation proved it out. Now what? Constipation has been an unsolvable problem in my life but I’ve been sick for only eight years. (Only is a dumb word for this). I hope our responses to your posts help you figure things out. As you do well, so do those of us out here grateful for your powers of observation, documentation and scientific knowledge. There is a very definite correlation here!
You remind me of https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314/ Whitney Davis, CFS sufferer who experiences symptom severity correlating with gut. Do you experience mental PEM? Or just physical. Because I learnt that CFS is not the only illness that caused exercise intolerance. Also remind me of MJ FOX. "I can think of a thousand possible scenarios: I used to go fishing in a river near paper mills and eat the salmon I caught; I've been to a lot of farms; I smoked a lot of pot in high school when the government was poisoning the crops. But you can drive yourself crazy trying to figure it out" While less medically unexplained, the emotion and intuition bit you said struck a chord w me hehe. Did you know 70% of the immune system is in the gut? I feel like I learnt that from reading your articles
I don’t consider myself a "severe" case, and I don’t suffer from mental PEM (thank gawd). I am way more functional than most people with CFS, and I have way more pain. My case is a cousin to theirs.
Most of the symptoms of CFS/ME are generic physiological responses to ANY major physiological stress. We only tend to call it CFS when there are no other obvious symptoms that narrow the diagnosis down to something else. For instance, someone with lymphoma might have "CFS" for a year… until they grow a weird lump, get tested, and the lymphoma is diagnosed. But many conditions never produce signs or symptoms that can help get to a diagnosis. And those are the cases that just get labelled "chronic fatigue syndrome."
Is PEM unique? It seems to be many people identify with PEM, the words but perhaps not the same as CFS experiences it. Physiological stress as in exertion or like trauma? Hmmm I guess you're right, a lot of people will end up with cfs bc of failure to rule out other conditions, and I guess cfs is like a state weakness, but with lymphoma for example, that weakness more or less stays stable as it progresses doesn't it? Whereas cfs you fluctuate but you can get weaker and weaker. Sigh my case too is a cousin to cfs, I have far more pain than fatigue though just like you, but is so strange, my pem is so different.
Fatigue and malaise are a generic response to ANY stress, yes, including extreme exertion in the healthy. Even fit young person can feel awful if they push themselves hard enough… but it will be temporary, and very qualitatively different as an experience, because it will be modest and they can and do recover quickly and in concert with their expectations. So it basically doesn't register as a problem unto itself, even though the biology is quite similar.
With serious PEM, you're getting essentially the same reaction… just way too soon, too strong. The alarm bells start to go off. It’s emotionally horrifying to feel like you've just run a marathon when in fact you just went for an hour walk. But the biochemistry is probably very similar.
Unique to CFS I mean. I know that's what I think about PEM as well, anybody can PEM, but it is the pathologically low threshold? . Which is why I wonder if it is unique to cfs or not. Because a lot of people would consider themselves to experience PEM if you asked if they felt their symptoms were related to exertion.
Ah, I see. No, I don’t think post-exertional malaise is unique to CFS, but it does become a bit of a word game. PEM is rarely labelled "PEM" if it has a known cause — it’s just "yeah, I’m sick/wounded, so obviously I feel nasty after exerting myself." We mostly talk about PEM as a phenomenon when we don’t know WHY the response to exercise is so dysfunctional. PEM comes up when it’s a major chronic symptom in the absence of an obvious cause. (And not always then!) In other words, we tend to call it PEM until we know why it’s happening. 😜
But, mechanistically speaking, it’s probably always the same thing going on.
Hmmm, had something similar about 3 weeks ago. Felt like everything I ate for days was stuck in my stomach. It took hours of pacing, some Tums, Gas-X, and then, ahem, a cathartic event at 2 a.m. My digestion gets weird when I've been stooping or working overhead, with food feeling stuck due to slow transit constipation. I also lose core, deltoid, and quad strength, feel like I'm going to faint, like my brain gets tired, feel like I'm being strangled a little, and short of breath. This can go on for days after doing so much as cleaning the litterbox. This started in 11/2019 with multiple frustrating consultations since then. I moved to a new county within my state a few months ago and found some independent physicians. After suggesting it's all spine-related and being dismissed and even laughed at the past 3 years, it's highly likely there is positional cervical cord compression and cervicothoracic radiculopathy without radicular pain, except for sporadic stabbing pain in my left little finger.
I was thinking about your spreadsheet, and wondering whether it included -- I don't know what to call them -- physiological measures: things like pulse, temp, blood pressure, blood sugar. The reason I'm asking about this is that it seems like one of them might be a better and more enlightening predictor of symptoms than some measure of real-life activities. Here's a simple example: Say your problem was dizzy spells, but that you weren't knowledgable about the relationship between low blood pressure and dizziness. So you might find some weak association between dizzy spells and amt. water drunk, saltiness of food eaten, long period of sitting before spell happened upon standing -- but disregard these correlations, because they were low and you didn't see any obvious way they could be connected with dizziness. But if somebody the told you to measure blood pressure, you'd find a powerful correlation between blood pressure and dizzy spells. Water, salt, & sitting for a long time can all affect blood pressure, but for a given episode of dizziness the culprit might be only one of them -- say a day where you drank very little water. So the idea is that one these physiological measures might be later in the causal chain leading to malaise, etc., than daily activity measures. Various daily activities might all influence the physiological measure, but it not be possible to see the pattern if you looked at daily activities alone, because they're too far back on the causal chain, and each might be only one of several things that could influence the crucial physiological process.
I'm not sure what physiological measures are most promising. The ones I named are just low-hanging fruit. There might be others that are more promising to look at for you. Maybe measures of inflammation? I know there are lab tests for various of these. Maybe some of them are cheap and simple to test. Maybe you can order the test yourself, if not in Canada then from an Indian pharmacy? And of course there are fancier physiological measures that you can measure yourself with a fitbit or some such. I know a number of people right now think heart rate variability is an important measure. I have no idea whether it's valid to think it's important. But apparently you can keep track of it via gizmos that are easily purchased.
You probably know about the Quantified Self website. People there know a lot about how to measure various things. Might be worth checking out if you haven't already.
I like this point about the combined effect of multiple variables. Might need a stats nerd to run some sort of factor analysis to find out if / how some of these variables group together.
I probably know at least a half dozen of them. And I know they all feel like their knowledge is chronically under-appreciated! So I might actually be able to recruit help. *to-do list intensifies*
for, unless, Paul, you are one yourself, which wouldn’t surprise me. You can figure out with simple math things like whether you feel worse when your sleep is bad, but there are patterns that you can’t pick up just by intuition and. looking at the numbers. You need factor analysis or some such.
Agreed. I am somewhat stats literate, but probably not enough for this. That said, there are probably more serious limitations here than my weak stats-fu. 😜
I am indeed measuring a bunch of basics, and leveraging tech to facilitate some of that. There's room for improvement, and in particular it could be more granular and detailed, but it’s hard to know where to draw the line. Take this too far and it really starts to seem like obsessive overkill! 🙂 I am already tracking dramatically more than I ever have before, more than most people with chronic illness ever will. Most days I figure that's probably either good enough and/or as much as I can realistically manage in any case!
Nov 22, 2022·edited Nov 22, 2022Liked by Paul Ingraham
"I am skeptical that just a couple days of bowel stoppage could make me feel soooo baaaad."
On the other hand, feeling soooo baaaad for any reason might involve central sensitization, which is a suspect in gut disorders, too. An unalerted brain might happily ignore most murmurings from our visceral nervous system, but an alerted brain?...
At PainScience, you once explained your dad's hyperacusis, and that, while humans can share external references to what is "too loud", we sadly can't for pain. I often get hyperacusis with migraines, and experience that amplified sound and amplified pain during migraine seem convincingly similar (though, of course, our experiences can fool us, too). Whatever my brain is doing during a migraine, it seems pretty good at convincing itself that noxiously heightening all the senses, not just pain, is somehow a good idea.
This is comforting in a way, because while feeling sorry for oneself is a commonly-suspected reason for general malaise and sensitivity to pain, we don't expect people to sense light and sound more acutely just because they feel sorry for themselves! "Huh, I can't always control my silly brain" is less guilt-wracking than, "Can I be *sure* I haven't drama-queened my way into feeling crummy?"
EDITED TO ADD: Migraineurs frequently report that sensory disturbance precedes pain. An "alerty" brain prone to central sensitization may not start with pain-alerts. That you didn't start feeling soooo baaaad until after the auditory barrage doesn't exclude the possibility your CNS decided to get hypervigilant about gut sensation for some reason.
Wild that this is the first post you put out after I subscribe—I'm the poop scientist that commented on your last post suggesting microbiome sequencing.
You're right that the "gut tonics" space is full of scammers (existing probiotics generally do nothing) but I also don't think you should ignore your intuition; it sounds like your case onset WAS associated with major GI disruption.
You're wrong about one thing, though: it's not hard to falsify. In fact, it's pretty simple. Pretreat with a heavy duty course of antibiotics to clear out any pathogens, then get a fecal transplant to repopulate your GI tract with a healthy ecosystem (probably capsule-style, if you feel things are getting stuck "higher up").
Have a look through my posts, if you get a chance, or shoot me an email if you'd like to chat 1:1 about it. SDSkolnick@gmail.com
Rest assured, I will not ignore my intuition. Wouldn't have written this post if I was going to ignore it.
What I meant about falsification is that there are so many conceivable and mysterious sources of gut dysfunction that you can never eliminate ALL of them. Sure, you can falsify SOME hypotheses about gut-powered malaise. For instance, we can definitively eliminate celiac disease. But there's plenty that cannot be.
"In fact, it's pretty simple. Pretreat with a heavy duty course of antibiotics to clear out any pathogens, then get a fecal transplant to repopulate your GI tract with a healthy ecosystem"
That may not sound so simple to risk-averse consumers.
How confident are most consumers that they could DIY the whole thing, including necessary prescriptions (from where? the black market?) safely? Especially chronically-ill consumers whose confidence in their own competence may already be taking a hit from chronic illness.
For consumers scared off from the DIY route, how confident are they that they can access professional services for this from reputable providers at a price they can afford?
If you're a professional poop scientist, you have access that most consumers don't. Much medicine that's physically simple (like the Beighton test, or checking for uric acid crystals for gout) may nonetheless remain socially inaccessible to the consumer. (I have a relative who's been to a string of doctors, all saying, "Could be gout, hard to know for sure without checking for uric acid crystals," all of whom then... don't draw samples to check for these crystals. I'm tempted to bust out a microscope myself, or would be if I were sure I knew how to safely draw the sample.)
I don't really have special access, just knowledge. Maybe that amounts to the same thing. In any case, I'm here to share it. That's why I started my substack and why I'm commenting here, and why I provided my email.
Overall, it's a surprisingly safe procedure, for what it is. OpenBiome, a nonprofit stool bank, just published a cohort study of 5,400 cases; there were six serious adverse events total, all in severely immunocompromised people. These were of course done by medical practitioners
Having it done professionally is currently complicated. Most physicians won't do FMT for anything other than a condition called C. diff. That may change soon; literally just today I had a call with someone from the Center for Biologics Evaluation and Research, making the case for broadening their policy around it. He seemed amenable, but couldn't make promises—policy changes take time and have to go through committees. That's time which many seriously ill people may not have.
But a lot of doctors recognize that it's as good a shot as we have at curing some currently-incurable chronic diseases, and understand the safety profile. So, even if they won't risk their malpractice insurance premiums by doing the procedure themselves, an understanding physician will often write their patient a prescription for the necessary antibiotics, and perform the requisite tests for the donor to ensure that they don't have any of the pathogens or viruses that would make it unsafe. In some cases, they'll even skip those if the donor is a long-term partner, under the assumption that if they were gonna give you a disease, you'd have gotten it by now.
Both your questions centered around confidence. Confidence comes from knowing your shit, and knowing that you know it.
I remember the PoP website! That's where I went for instructions a few years back when I was considering it. But between the disclaimers and the admitted difficulties of finding a suitable donor, I had doubts. PoP recommends you tell donors, "The only hope left to me is an unusual treatment, a fecal transplant." But was it my only hope? Subsequent events proved no, it wasn't.
Besides finding a donor, getting buy-in from caregivers, both professional and informal, is another hurdle. I bear a lot of guilt for making "not the best decisions" medically in some of my dearest ones' eyes, guilt I'm good at internalizing, and which I fear adding to with unorthodox treatments that do not have their buy-in. (Unorthodox treatments that *do* have their buy-in, well, they'll guilt-trip me for *not* trying those!) Currently, I don't have access to an understanding doctor, either. That could change.
I also looked into helminth therapy for atopy, only to be deterred by all the disclaimers on mail-order helminth therapy saying they won't ship to the US. (Or so it was at the time.) Smuggling helminths seems like it wouldn't be hard, but it's still... smuggling?... Exposing therapeutic helminth smugglers sounds like it should be exactly nobody's priority but even a small risk of legal trouble over something I'm not entirely sure about dampens my adventurousness.
Hi Paul, I've been a long-time reader and follower of your work! I found it back around maybe 2008-ish because of my own chronic pain, and then I went to school to became a RMT from 2011-2013, and was grateful to have the background of reading your work to give me a critical and informed approach about the limitations of the current curriculum in massage therapy education.... based on that background I was actually pretty disappointed in the education. Anyway, I haven't read your stuff in a while (I had a baby in 2020 and have been busy parenting), but I'm now catching up with Project try everything. I have also tried a lot of stuff for my own chronic pain and IBS, and the diet piece has been very helpful for me. I did a deep dive into reading about dietary stuff in around 2014 and came across the work of Sarah Ballantyne, Phd and did a couple of rounds of the autoimmune paleo protocol that she developed - I warn you that it is quite an intense and difficult dietary protocol, but in my opinion totally worth it. It helped me pinpoint a few different foods that I'm sensitive to and generally up-level my health. I would say it reduced my pain by around 50%, which is huge! Her work is very well referenced and evidence-based and I think you would appreciate her very grounded science approach. Here is a great place to start: https://www.thepaleomom.com/what-is-leaky-gut-and-how-can-it-cause/
Thanks, Shaina. Sorry I took so long to respond here. (Holidays!) Delighted to hear that you are feeling significantly better, and thanks for the reading recommendation. I have mixed feelings about the leaky gut hypothesis, but I know that I need to update my knowledge before I say any more about it (and this is actually on my to-do list for my fibromyalgia article).
I’ve had the same intuition and some light documentation proved it out. Now what? Constipation has been an unsolvable problem in my life but I’ve been sick for only eight years. (Only is a dumb word for this). I hope our responses to your posts help you figure things out. As you do well, so do those of us out here grateful for your powers of observation, documentation and scientific knowledge. There is a very definite correlation here!
Thank-you,
Jody Eastman
"Only" eight years… in a life where everyone constantly talks about how every moment is precious! Ugh.
Thanks for the validation of my experience here. Good to know someone else has noticed a correlation over time.
You remind me of https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314/ Whitney Davis, CFS sufferer who experiences symptom severity correlating with gut. Do you experience mental PEM? Or just physical. Because I learnt that CFS is not the only illness that caused exercise intolerance. Also remind me of MJ FOX. "I can think of a thousand possible scenarios: I used to go fishing in a river near paper mills and eat the salmon I caught; I've been to a lot of farms; I smoked a lot of pot in high school when the government was poisoning the crops. But you can drive yourself crazy trying to figure it out" While less medically unexplained, the emotion and intuition bit you said struck a chord w me hehe. Did you know 70% of the immune system is in the gut? I feel like I learnt that from reading your articles
I don’t consider myself a "severe" case, and I don’t suffer from mental PEM (thank gawd). I am way more functional than most people with CFS, and I have way more pain. My case is a cousin to theirs.
Most of the symptoms of CFS/ME are generic physiological responses to ANY major physiological stress. We only tend to call it CFS when there are no other obvious symptoms that narrow the diagnosis down to something else. For instance, someone with lymphoma might have "CFS" for a year… until they grow a weird lump, get tested, and the lymphoma is diagnosed. But many conditions never produce signs or symptoms that can help get to a diagnosis. And those are the cases that just get labelled "chronic fatigue syndrome."
Is PEM unique? It seems to be many people identify with PEM, the words but perhaps not the same as CFS experiences it. Physiological stress as in exertion or like trauma? Hmmm I guess you're right, a lot of people will end up with cfs bc of failure to rule out other conditions, and I guess cfs is like a state weakness, but with lymphoma for example, that weakness more or less stays stable as it progresses doesn't it? Whereas cfs you fluctuate but you can get weaker and weaker. Sigh my case too is a cousin to cfs, I have far more pain than fatigue though just like you, but is so strange, my pem is so different.
Is PEM "unique" to what?
Fatigue and malaise are a generic response to ANY stress, yes, including extreme exertion in the healthy. Even fit young person can feel awful if they push themselves hard enough… but it will be temporary, and very qualitatively different as an experience, because it will be modest and they can and do recover quickly and in concert with their expectations. So it basically doesn't register as a problem unto itself, even though the biology is quite similar.
With serious PEM, you're getting essentially the same reaction… just way too soon, too strong. The alarm bells start to go off. It’s emotionally horrifying to feel like you've just run a marathon when in fact you just went for an hour walk. But the biochemistry is probably very similar.
Unique to CFS I mean. I know that's what I think about PEM as well, anybody can PEM, but it is the pathologically low threshold? . Which is why I wonder if it is unique to cfs or not. Because a lot of people would consider themselves to experience PEM if you asked if they felt their symptoms were related to exertion.
Ah, I see. No, I don’t think post-exertional malaise is unique to CFS, but it does become a bit of a word game. PEM is rarely labelled "PEM" if it has a known cause — it’s just "yeah, I’m sick/wounded, so obviously I feel nasty after exerting myself." We mostly talk about PEM as a phenomenon when we don’t know WHY the response to exercise is so dysfunctional. PEM comes up when it’s a major chronic symptom in the absence of an obvious cause. (And not always then!) In other words, we tend to call it PEM until we know why it’s happening. 😜
But, mechanistically speaking, it’s probably always the same thing going on.
Hmmm, had something similar about 3 weeks ago. Felt like everything I ate for days was stuck in my stomach. It took hours of pacing, some Tums, Gas-X, and then, ahem, a cathartic event at 2 a.m. My digestion gets weird when I've been stooping or working overhead, with food feeling stuck due to slow transit constipation. I also lose core, deltoid, and quad strength, feel like I'm going to faint, like my brain gets tired, feel like I'm being strangled a little, and short of breath. This can go on for days after doing so much as cleaning the litterbox. This started in 11/2019 with multiple frustrating consultations since then. I moved to a new county within my state a few months ago and found some independent physicians. After suggesting it's all spine-related and being dismissed and even laughed at the past 3 years, it's highly likely there is positional cervical cord compression and cervicothoracic radiculopathy without radicular pain, except for sporadic stabbing pain in my left little finger.
I was thinking about your spreadsheet, and wondering whether it included -- I don't know what to call them -- physiological measures: things like pulse, temp, blood pressure, blood sugar. The reason I'm asking about this is that it seems like one of them might be a better and more enlightening predictor of symptoms than some measure of real-life activities. Here's a simple example: Say your problem was dizzy spells, but that you weren't knowledgable about the relationship between low blood pressure and dizziness. So you might find some weak association between dizzy spells and amt. water drunk, saltiness of food eaten, long period of sitting before spell happened upon standing -- but disregard these correlations, because they were low and you didn't see any obvious way they could be connected with dizziness. But if somebody the told you to measure blood pressure, you'd find a powerful correlation between blood pressure and dizzy spells. Water, salt, & sitting for a long time can all affect blood pressure, but for a given episode of dizziness the culprit might be only one of them -- say a day where you drank very little water. So the idea is that one these physiological measures might be later in the causal chain leading to malaise, etc., than daily activity measures. Various daily activities might all influence the physiological measure, but it not be possible to see the pattern if you looked at daily activities alone, because they're too far back on the causal chain, and each might be only one of several things that could influence the crucial physiological process.
I'm not sure what physiological measures are most promising. The ones I named are just low-hanging fruit. There might be others that are more promising to look at for you. Maybe measures of inflammation? I know there are lab tests for various of these. Maybe some of them are cheap and simple to test. Maybe you can order the test yourself, if not in Canada then from an Indian pharmacy? And of course there are fancier physiological measures that you can measure yourself with a fitbit or some such. I know a number of people right now think heart rate variability is an important measure. I have no idea whether it's valid to think it's important. But apparently you can keep track of it via gizmos that are easily purchased.
You probably know about the Quantified Self website. People there know a lot about how to measure various things. Might be worth checking out if you haven't already.
I like this point about the combined effect of multiple variables. Might need a stats nerd to run some sort of factor analysis to find out if / how some of these variables group together.
I probably know at least a half dozen of them. And I know they all feel like their knowledge is chronically under-appreciated! So I might actually be able to recruit help. *to-do list intensifies*
Yes a stats nerd is definitely called
for, unless, Paul, you are one yourself, which wouldn’t surprise me. You can figure out with simple math things like whether you feel worse when your sleep is bad, but there are patterns that you can’t pick up just by intuition and. looking at the numbers. You need factor analysis or some such.
Agreed. I am somewhat stats literate, but probably not enough for this. That said, there are probably more serious limitations here than my weak stats-fu. 😜
I am indeed measuring a bunch of basics, and leveraging tech to facilitate some of that. There's room for improvement, and in particular it could be more granular and detailed, but it’s hard to know where to draw the line. Take this too far and it really starts to seem like obsessive overkill! 🙂 I am already tracking dramatically more than I ever have before, more than most people with chronic illness ever will. Most days I figure that's probably either good enough and/or as much as I can realistically manage in any case!
"I am skeptical that just a couple days of bowel stoppage could make me feel soooo baaaad."
On the other hand, feeling soooo baaaad for any reason might involve central sensitization, which is a suspect in gut disorders, too. An unalerted brain might happily ignore most murmurings from our visceral nervous system, but an alerted brain?...
https://onlinelibrary.wiley.com/doi/abs/10.1111/nmo.14156
At PainScience, you once explained your dad's hyperacusis, and that, while humans can share external references to what is "too loud", we sadly can't for pain. I often get hyperacusis with migraines, and experience that amplified sound and amplified pain during migraine seem convincingly similar (though, of course, our experiences can fool us, too). Whatever my brain is doing during a migraine, it seems pretty good at convincing itself that noxiously heightening all the senses, not just pain, is somehow a good idea.
This is comforting in a way, because while feeling sorry for oneself is a commonly-suspected reason for general malaise and sensitivity to pain, we don't expect people to sense light and sound more acutely just because they feel sorry for themselves! "Huh, I can't always control my silly brain" is less guilt-wracking than, "Can I be *sure* I haven't drama-queened my way into feeling crummy?"
EDITED TO ADD: Migraineurs frequently report that sensory disturbance precedes pain. An "alerty" brain prone to central sensitization may not start with pain-alerts. That you didn't start feeling soooo baaaad until after the auditory barrage doesn't exclude the possibility your CNS decided to get hypervigilant about gut sensation for some reason.
Wild that this is the first post you put out after I subscribe—I'm the poop scientist that commented on your last post suggesting microbiome sequencing.
You're right that the "gut tonics" space is full of scammers (existing probiotics generally do nothing) but I also don't think you should ignore your intuition; it sounds like your case onset WAS associated with major GI disruption.
You're wrong about one thing, though: it's not hard to falsify. In fact, it's pretty simple. Pretreat with a heavy duty course of antibiotics to clear out any pathogens, then get a fecal transplant to repopulate your GI tract with a healthy ecosystem (probably capsule-style, if you feel things are getting stuck "higher up").
Have a look through my posts, if you get a chance, or shoot me an email if you'd like to chat 1:1 about it. SDSkolnick@gmail.com
Rest assured, I will not ignore my intuition. Wouldn't have written this post if I was going to ignore it.
What I meant about falsification is that there are so many conceivable and mysterious sources of gut dysfunction that you can never eliminate ALL of them. Sure, you can falsify SOME hypotheses about gut-powered malaise. For instance, we can definitively eliminate celiac disease. But there's plenty that cannot be.
"In fact, it's pretty simple. Pretreat with a heavy duty course of antibiotics to clear out any pathogens, then get a fecal transplant to repopulate your GI tract with a healthy ecosystem"
That may not sound so simple to risk-averse consumers.
How confident are most consumers that they could DIY the whole thing, including necessary prescriptions (from where? the black market?) safely? Especially chronically-ill consumers whose confidence in their own competence may already be taking a hit from chronic illness.
For consumers scared off from the DIY route, how confident are they that they can access professional services for this from reputable providers at a price they can afford?
If you're a professional poop scientist, you have access that most consumers don't. Much medicine that's physically simple (like the Beighton test, or checking for uric acid crystals for gout) may nonetheless remain socially inaccessible to the consumer. (I have a relative who's been to a string of doctors, all saying, "Could be gout, hard to know for sure without checking for uric acid crystals," all of whom then... don't draw samples to check for these crystals. I'm tempted to bust out a microscope myself, or would be if I were sure I knew how to safely draw the sample.)
I don't really have special access, just knowledge. Maybe that amounts to the same thing. In any case, I'm here to share it. That's why I started my substack and why I'm commenting here, and why I provided my email.
Overall, it's a surprisingly safe procedure, for what it is. OpenBiome, a nonprofit stool bank, just published a cohort study of 5,400 cases; there were six serious adverse events total, all in severely immunocompromised people. These were of course done by medical practitioners
Having it done professionally is currently complicated. Most physicians won't do FMT for anything other than a condition called C. diff. That may change soon; literally just today I had a call with someone from the Center for Biologics Evaluation and Research, making the case for broadening their policy around it. He seemed amenable, but couldn't make promises—policy changes take time and have to go through committees. That's time which many seriously ill people may not have.
But a lot of doctors recognize that it's as good a shot as we have at curing some currently-incurable chronic diseases, and understand the safety profile. So, even if they won't risk their malpractice insurance premiums by doing the procedure themselves, an understanding physician will often write their patient a prescription for the necessary antibiotics, and perform the requisite tests for the donor to ensure that they don't have any of the pathogens or viruses that would make it unsafe. In some cases, they'll even skip those if the donor is a long-term partner, under the assumption that if they were gonna give you a disease, you'd have gotten it by now.
Both your questions centered around confidence. Confidence comes from knowing your shit, and knowing that you know it.
Here's a solid place to start, if you'd like to learn: https://web.archive.org/web/20170504020152/http://thepowerofpoop.com/epatients/fecal-transplant-instructions
I remember the PoP website! That's where I went for instructions a few years back when I was considering it. But between the disclaimers and the admitted difficulties of finding a suitable donor, I had doubts. PoP recommends you tell donors, "The only hope left to me is an unusual treatment, a fecal transplant." But was it my only hope? Subsequent events proved no, it wasn't.
Besides finding a donor, getting buy-in from caregivers, both professional and informal, is another hurdle. I bear a lot of guilt for making "not the best decisions" medically in some of my dearest ones' eyes, guilt I'm good at internalizing, and which I fear adding to with unorthodox treatments that do not have their buy-in. (Unorthodox treatments that *do* have their buy-in, well, they'll guilt-trip me for *not* trying those!) Currently, I don't have access to an understanding doctor, either. That could change.
I also looked into helminth therapy for atopy, only to be deterred by all the disclaimers on mail-order helminth therapy saying they won't ship to the US. (Or so it was at the time.) Smuggling helminths seems like it wouldn't be hard, but it's still... smuggling?... Exposing therapeutic helminth smugglers sounds like it should be exactly nobody's priority but even a small risk of legal trouble over something I'm not entirely sure about dampens my adventurousness.