Conditions like ME/CFS, EDS, POTS, MCAS, and fibromyalgia are common but often ignored, dismissed, misdiagnosed, psychologized, and sometimes institutionalized
We are the penultimate statistical outliers if taken as individuals. As a population we would cluster and that’s where we need to be looking for patterns. In Systems Science,it’s all in where you place your boundaries!. Love you work Nita Jain ❤️
Whoa! You have brought up a lot of topics here that are not exclusive to, or limited to health care, the "practice" of medicine, misogyny, or history. Right on target as far as this observer is concerned. The language of praise, the awarding of "prizes," media celebration and the christening of institutions actively hides, (or does it reward?) incompetence, at the very least, within institutions that are supposedly bettering the public and advancing the herd. Well done. Well written. I wonder what, if anything will be done about this, "phenomenon."
The edge case framing really resonates. I've had recurring stomach issues for years,the kind that show up exactly when I'm away from home for work, disrupting sleep, appetite, everything. Every test comes back clean. Every visit ends with some variation of "we don't see anything wrong."
Which is technically true and also completely unhelpful.
What's frustrating isn't just the absence of answers, it's the implicit conclusion that follows. Nothing on the scan means nothing is happening. But something is clearly happening, just apparently not in a language the current diagnostic framework reads fluently. Stress gets floated as an explanation, which may well be part of it, but that's also conveniently where the inquiry tends to stop rather than start.
The mast cell and gut-brain axis research is genuinely interesting in this context. The GI tract is exquisitely sensitive to disruption, routine changes, travel, unfamiliar food and sleep pattern shifts.
The part about patients comparing notes on online forums hit close to home. That's often where the most useful pattern recognition actually happens, not in a 15-minute appointment.
I empathize, considerations of microbiome dysbiosis, mitochondrial dysfunction, and mast cell activation are virtually absent in GI clinical practice even as the evidence base for these drivers continues to grow. Translating research from the bench to the bedside becomes the real sticking point.
A peptide called larazotide showed promising results in patients with celiac disease across phase I and phase II trials only to be abandoned because the company wasn’t able to recruit enough patients for a phase III trial. The drug works by inhibiting zonulin and protecting the integrity of tight junction proteins, which means it could theoretically help in any condition characterized by loss of intestinal barrier function and endotoxemia. That includes metabolic diseases and autoimmune conditions.
Eventually, researchers successfully repurposed the drug in MIS-C, a severe post-COVID inflammatory syndrome seen in children where the breakdown of the gut barrier mediates antigenemia and sepsis-like physiology. Larazotide seems to ameliorate intestinal hyperpermeability, regardless of how that presents in a patient. Really seems to underscore the folly of siloed indication-specific drug development.
There was this podcast a couple of years ago about this mysterious psychosis gripping a small town in New England. It was a true story. It was really good, but then at the end of the series, the host concluded the symptoms were being unintentionally created by the sufferers. I think he concluded this because a doctor told him it was the only possible explanation.
The host’s conclusion seems shortsighted when you consider how many cases of mass psychosis were later found to be the result of ergotism, syphilis, or lead poisoning. Are you talking about the Hysterical podcast that described teenage girls presenting with tic-like symptoms in Le Roy?
I haven’t listened to the podcast, but that case sounded a lot like PANDAS to me, and Rosario Trifiletti had found some supporting evidence, but his diagnosis contradicted that of the New York State officials. Post-infectious sequelae in pediatric populations still don’t receive enough attention.
hat ending says everything. It really means "the only explanation our current tools can confirm." Those are very different things, but medicine has a way of collapsing that distinction, especially when the alternative is admitting uncertainty. A whole town of people don't independently decide to manufacture the same symptoms. That conclusion deserves more scrutiny than one doctor's confidence.
Absolutely, the Semmelweis reflex describes the tendency to reject new evidence because it contradicts established norms, beliefs, or paradigms, especially those surrounding identity. Semmelweis was a physician who discovered that handwashing before delivering babies significantly reduced maternal mortality. Unfortunately, he was ahead of his time and ended up dying of an infection after being committed to a mental institution. The profession has not been kind to Cassandras.
And he died of the very thing he was trying to prevent; there's a painful irony there that the profession never seems to fully sit with. The Cassandra pattern keeps repeating because the system rewards consensus more than it rewards being right. H. pylori, prions, now post-infectious syndromes show the pattern is consistent enough that you'd think medicine would build in more humility by default.
This was very informative/fun to read, thank you. I think it is a shame such little funding is set aside to understand these conditions.
Of course primarily because I want to get better, but I also have no doubt that there is some important/exciting human biology of systems operating in our bodies that we have yet to discover that likely regulate many other phenomena (e.g aging).
I think MECFS, POTS, fibromyalgia etc... are just the tip of the iceberg with the most extreme/obvious ways these systems (whatever they end up being) can be dysregulated.
I agree, the emergent properties are more exciting to study, not least of all because of the potential to help a larger population of patients. Many rare diseases overlap with aging and senescence, and it’s a shame to see researchers working in silos when there’s so much that could translate across disciplines and conditions.
We are the penultimate statistical outliers if taken as individuals. As a population we would cluster and that’s where we need to be looking for patterns. In Systems Science,it’s all in where you place your boundaries!. Love you work Nita Jain ❤️
Thanks so much, Tracy! You’ve been an inspiration for me, and I admire your perseverance to keep fighting the good fight.
Whoa! You have brought up a lot of topics here that are not exclusive to, or limited to health care, the "practice" of medicine, misogyny, or history. Right on target as far as this observer is concerned. The language of praise, the awarding of "prizes," media celebration and the christening of institutions actively hides, (or does it reward?) incompetence, at the very least, within institutions that are supposedly bettering the public and advancing the herd. Well done. Well written. I wonder what, if anything will be done about this, "phenomenon."
The edge case framing really resonates. I've had recurring stomach issues for years,the kind that show up exactly when I'm away from home for work, disrupting sleep, appetite, everything. Every test comes back clean. Every visit ends with some variation of "we don't see anything wrong."
Which is technically true and also completely unhelpful.
What's frustrating isn't just the absence of answers, it's the implicit conclusion that follows. Nothing on the scan means nothing is happening. But something is clearly happening, just apparently not in a language the current diagnostic framework reads fluently. Stress gets floated as an explanation, which may well be part of it, but that's also conveniently where the inquiry tends to stop rather than start.
The mast cell and gut-brain axis research is genuinely interesting in this context. The GI tract is exquisitely sensitive to disruption, routine changes, travel, unfamiliar food and sleep pattern shifts.
The part about patients comparing notes on online forums hit close to home. That's often where the most useful pattern recognition actually happens, not in a 15-minute appointment.
I empathize, considerations of microbiome dysbiosis, mitochondrial dysfunction, and mast cell activation are virtually absent in GI clinical practice even as the evidence base for these drivers continues to grow. Translating research from the bench to the bedside becomes the real sticking point.
A peptide called larazotide showed promising results in patients with celiac disease across phase I and phase II trials only to be abandoned because the company wasn’t able to recruit enough patients for a phase III trial. The drug works by inhibiting zonulin and protecting the integrity of tight junction proteins, which means it could theoretically help in any condition characterized by loss of intestinal barrier function and endotoxemia. That includes metabolic diseases and autoimmune conditions.
Eventually, researchers successfully repurposed the drug in MIS-C, a severe post-COVID inflammatory syndrome seen in children where the breakdown of the gut barrier mediates antigenemia and sepsis-like physiology. Larazotide seems to ameliorate intestinal hyperpermeability, regardless of how that presents in a patient. Really seems to underscore the folly of siloed indication-specific drug development.
There was this podcast a couple of years ago about this mysterious psychosis gripping a small town in New England. It was a true story. It was really good, but then at the end of the series, the host concluded the symptoms were being unintentionally created by the sufferers. I think he concluded this because a doctor told him it was the only possible explanation.
‼️🙄
The host’s conclusion seems shortsighted when you consider how many cases of mass psychosis were later found to be the result of ergotism, syphilis, or lead poisoning. Are you talking about the Hysterical podcast that described teenage girls presenting with tic-like symptoms in Le Roy?
I haven’t listened to the podcast, but that case sounded a lot like PANDAS to me, and Rosario Trifiletti had found some supporting evidence, but his diagnosis contradicted that of the New York State officials. Post-infectious sequelae in pediatric populations still don’t receive enough attention.
Right?! So arrogant to assume the opinion of the state officials was the definitive word.
Yes, that’s exactly the podcast I was thinking about.
hat ending says everything. It really means "the only explanation our current tools can confirm." Those are very different things, but medicine has a way of collapsing that distinction, especially when the alternative is admitting uncertainty. A whole town of people don't independently decide to manufacture the same symptoms. That conclusion deserves more scrutiny than one doctor's confidence.
Absolutely, the Semmelweis reflex describes the tendency to reject new evidence because it contradicts established norms, beliefs, or paradigms, especially those surrounding identity. Semmelweis was a physician who discovered that handwashing before delivering babies significantly reduced maternal mortality. Unfortunately, he was ahead of his time and ended up dying of an infection after being committed to a mental institution. The profession has not been kind to Cassandras.
And he died of the very thing he was trying to prevent; there's a painful irony there that the profession never seems to fully sit with. The Cassandra pattern keeps repeating because the system rewards consensus more than it rewards being right. H. pylori, prions, now post-infectious syndromes show the pattern is consistent enough that you'd think medicine would build in more humility by default.
so true
There are far too many of us on the outside!
Indeed there are! We’re an army, and while there’s strength in numbers, we still need support from physicians and policymakers to move the needle.
This was very informative/fun to read, thank you. I think it is a shame such little funding is set aside to understand these conditions.
Of course primarily because I want to get better, but I also have no doubt that there is some important/exciting human biology of systems operating in our bodies that we have yet to discover that likely regulate many other phenomena (e.g aging).
I think MECFS, POTS, fibromyalgia etc... are just the tip of the iceberg with the most extreme/obvious ways these systems (whatever they end up being) can be dysregulated.
I agree, the emergent properties are more exciting to study, not least of all because of the potential to help a larger population of patients. Many rare diseases overlap with aging and senescence, and it’s a shame to see researchers working in silos when there’s so much that could translate across disciplines and conditions.