A sizable percentage of autoimmune cases of well accepted autoimmune diseases (rheumatoid arthritis, celiac, etc etc etc ) are completely seronegative despite glaringly obvious clinical signs: eg peeing skin, deformed joints etc etc - all blood work perfectly normal. Happens all the time.
strongest evidence so far in gut and immune cells for living organisms.
They did find it in the brain of one patient when doing an unrelated procedure at the NIH. That could be due to many things though. General findings around the CSF/brain have been negative.
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.
If you feel tired the treatment is almost always symptomatic: stimulants and wakefulness promoters.
If you sleep over 11 hrs per 24 hours: that’s pathological and they will be prescribed.
Fall asleep faster than X minutes? Same diagnosis, same meds.
Have apnea and yet still fatigued/sleepy after CPAP/surgery? Same meds.
Fulfill criteria for ADHD? Same meds.
Fatigue after TBI? Same meds.
Fatigue with MS? Same meds.
The root cause may or may not be eventually found, but there is no reason to get diagnosed with whatever is most useful to begin at least supporting treatment.
Exactly. The people at the John Hopkins Camel-Winston Center for Respiratory Research know that Camel and Winston are gonna stop cutting the checks if they don't get something they can trot out to support them when they get hauled in front of congress even if that's only a minority of the work output they funded.
Even if nobody means to do evil the evil will be done just as a result of people factoring that in subconsciously and the pressure that applies systemically.
Where is really gets spicy is when you have dueling funding sources. Where I went to school you had the environmental compliance industry funding the public policy research to say that nobody should be allowed to install a fencepost without paying their way through some hoops while the Kochs (through some indirection) were funding different research in the same department to say no akshually that compliance stuff is making us all poorer.
>Where is really gets spicy is when you have dueling funding sources. Where I went to school you had the environmental compliance industry funding the public policy research to say that nobody should be allowed to install a fencepost without paying their way through some hoops while the Kochs (through some indirection) were funding different research in the same department to say no akshually that compliance stuff is making us all poorer.
given lack of success with ME/CFS, do you think we'll fare any better this time?
post-viral syndromes have been with us for a long time.
outside of very clear sequelae like definitive texbook case of autoimmune disease or something obvious like that - we don't really know how to treat them?
absolutely, in fact many of the top ME/CFS researchers have converged their research and are teaming up with the Long COVID researchers to tackle this once and for all.
we now have novel technology being used like PET scanning, T cell biosensors, and single molecule ultrasensitive assays.
Antigen/superantigen persistence is shared and may be treated with extended courses of antivirals, monoclonal antibodies, immune modulators, and even trying checkpoint inhibitors to reverse T cell exhaustion.
the textbook is being rewritten and a key publication on how to treat at least Long COVID based on what I mentioned above will come out next week. NIH will launch their trials very soon likely announcing in March.
A sizable percentage of autoimmune cases of well accepted autoimmune diseases (rheumatoid arthritis, celiac, etc etc etc ) are completely seronegative despite glaringly obvious clinical signs: eg peeing skin, deformed joints etc etc - all blood work perfectly normal. Happens all the time.
Why would we expect anything different here?