8 ms·

hopefully we will get somewhere with these studies. The lack of solid research on a disease that affects millions (likely a good percentage undiagnosed) is real

hopefully we will get somewhere with these studies. The lack of solid research on a disease that affects millions (likely a good percentage undiagnosed) is really tough for patients - and myself really, as I've found i likely suffer from this. Finding out about autonomic dysfunction and small fiber neuropathy as I researched my own fatigue and finding out I likely have this has been very challenging.

zx8080 2mo ago
It's probably more profitable to treat symptoms.
- jmye 2mo ago
  [dead]
- jambalaya8 2mo ago
  Hard to treat symptoms with immunological conditions. I mean, there are vitamins and supplements, but noone is gonna generally hand out economy-sized bottles of controlled substances for exhaustion, etc. These sorts of conditions are systemic, and the causes and ways of dealing with the accompanying syndromes are probably always going to be different from individual to individual (well, likely the exact physiological causes anyway).
- J0nL 2mo ago
  It's true, this is why there are so many government agencies focused on healthcare. The medical field lacks a healthy profit motive. Healthcare CEOs use their fiduciary responsibilities as an excuse and say they'll get sued if they don't exploit situations. There was a SARS vaccine as far as back 2016 which could have changed everything but was ignored. Pharmaceutical execs told them they were, "waiting to see if it comes back yearly" first
- PaulKeeble 2mo ago
  So far all the trials attempting to do so have failed. Its not that people aren't trying this, it just doesn't work for most of the symptoms.
naturalmovement 2mo ago
> as I researched my own fatigue and finding out I likely have this Please don't do this. It's the medical equivalent of copy/pasting shit you don't understand from Stack Overflow. Go see a doctor who has a degree and training.
- hombre_fatal 2mo ago
  If there's no test for it, then what is the doctor going to do for something as nebulous as long covid?
  - internet_user 2mo ago
    Plenty of tests. Autonomic medicine is not nebulous, more often than not what’s happening is some homeostasis failure/some peripheral nerve thing/brain damage. At the very minimum. Widespread issues all over the body without readily obvious organ damage is nearly always nerves/brain. 99% of physicians wouldn’t know what to do with specialized test results anyway, even if they’d know what/how to order in the first place. Internists don’t know how to read PET scans, radiologists don’t know anything about homeostasis. general radiology cant even read head&neck scans, you want a specialized radiologist for that. geneticists don’t have the slightest idea about how to read nerve studies, which is actually a completely separate certification, not even every neurologist has it or does them. Medicine is the game of super-specialization. And nobody wants to bother to try to piece it all together for you. Very few MDs are actually able to, in the first place. Ideally, you have a very broadly competent internist to figure out what direction to even start digging at, and then find the sub specialist who has the expertise AND interest in that area. eg NIH’s section on neuro cardiology recently closed because this one dude who was REALLY into simply was too old, couldnt find a replacement or build a bigger lab that could sustain itself and retired. At times you need a specialist trained and practicing in two different specialties: eg ENT + neuro, for example. Those can be hard to find. Neuro cardio more common especially now.
  - kranke155 2mo ago
    There are tests for it. SFN biopsy, tilt table, ETT.

zx8080 2mo ago

It's probably more profitable to treat symptoms.

jmye 2mo ago
[dead]
jambalaya8 2mo ago
Hard to treat symptoms with immunological conditions. I mean, there are vitamins and supplements, but noone is gonna generally hand out economy-sized bottles of controlled substances for exhaustion, etc. These sorts of conditions are systemic, and the causes and ways of dealing with the accompanying syndromes are probably always going to be different from individual to individual (well, likely the exact physiological causes anyway).
J0nL 2mo ago
It's true, this is why there are so many government agencies focused on healthcare. The medical field lacks a healthy profit motive. Healthcare CEOs use their fiduciary responsibilities as an excuse and say they'll get sued if they don't exploit situations. There was a SARS vaccine as far as back 2016 which could have changed everything but was ignored. Pharmaceutical execs told them they were, "waiting to see if it comes back yearly" first
PaulKeeble 2mo ago
So far all the trials attempting to do so have failed. Its not that people aren't trying this, it just doesn't work for most of the symptoms.

naturalmovement 2mo ago

> as I researched my own fatigue and finding out I likely have this Please don't do this. It's the medical equivalent of copy/pasting shit you don't understand from Stack Overflow. Go see a doctor who has a degree and training.

hombre_fatal 2mo ago
If there's no test for it, then what is the doctor going to do for something as nebulous as long covid?
- internet_user 2mo ago
  Plenty of tests. Autonomic medicine is not nebulous, more often than not what’s happening is some homeostasis failure/some peripheral nerve thing/brain damage. At the very minimum. Widespread issues all over the body without readily obvious organ damage is nearly always nerves/brain. 99% of physicians wouldn’t know what to do with specialized test results anyway, even if they’d know what/how to order in the first place. Internists don’t know how to read PET scans, radiologists don’t know anything about homeostasis. general radiology cant even read head&neck scans, you want a specialized radiologist for that. geneticists don’t have the slightest idea about how to read nerve studies, which is actually a completely separate certification, not even every neurologist has it or does them. Medicine is the game of super-specialization. And nobody wants to bother to try to piece it all together for you. Very few MDs are actually able to, in the first place. Ideally, you have a very broadly competent internist to figure out what direction to even start digging at, and then find the sub specialist who has the expertise AND interest in that area. eg NIH’s section on neuro cardiology recently closed because this one dude who was REALLY into simply was too old, couldnt find a replacement or build a bigger lab that could sustain itself and retired. At times you need a specialist trained and practicing in two different specialties: eg ENT + neuro, for example. Those can be hard to find. Neuro cardio more common especially now.
- kranke155 2mo ago
  There are tests for it. SFN biopsy, tilt table, ETT.