I went to a neurologist who said there's tons of people coming in with the same complaint after COVID, and since there's no literature on that yet, he couldn't really do anything.
It gets better.
https://doi.org/10.1016/j.neuron.2022.10.006
https://doi.org/10.1007%2Fs10238-022-00871-8
https://doi.org/10.1016/j.nerep.2022.100154
https://doi.org/10.1042/BCJ20220016
I would like to point to this kind of statement that doctors often make, that there is “no literature” or that “nothing is known”. This is very often flat out wrong. Consider the size of the statement: Nothing is known and there exists no literature. The domain of knowledge required for the statement is omniscience. Having read all papers. It’s not an acceptable statement for anyone to make.
I don't think there's much value taking the word that literally. I simply assume the acedemic conscious when I hear "there is no literature on X". I certainly wouldn't want a neurologist to tell me "oh yea I read some news on this last week and X" and treat that as gospel for an ongoing issue.
I of course accept the fact that information takes time to propagate, but the fact remains that I have been to specialist doctors for serious issues which have stated flat out that “nothing is known” – where they literally meant ”nothing is known”, which was completely contradicted by papers. Ten year old papers. Twenty year old papers. Fifty year old papers.
Again and again.
Certainly not all doctors are part of this culture. More than one time I have been present when a doctor who reads academic papers makes a decision based on that information which effectively saved a life.
Nonetheless, this hazard is a very real part of medical practicioner culture.
I certainly wouldn’t want a neurologist to treat last week’s news as gospel either. Absolutely not.
I just don’t know yet how to tell people how big this gulf can be between existing knowledge – established, proven, actionable knowledge – and what a given doctor acknowledges and/or doesn’t flat out deny the existence of.
Maybe this:
Anyone can read academic papers. In biology and medicine. Anyone. Really. And it is the minority of doctors who actually do so. I suggest that people verify doctors’ statements about the complete non-existence of knowledge about any given thing, should they make such statements. Read. Read as if lives were at stake.
—
Part of the reason doctors don’t read is that they are often overworked. They really, really are. (It’s not the only reason though.)
And: Of course!, reading science papers online IS NOT a substitute for medical training.
What I suggest people do is this: Help your doctors to help you.
With the utmost humility. As if lives were at stake.
The big problem was that I'd always been able to hide my adhd symptoms, or at least 'clever' my way around them, and long covid / covid brain just laid them all bare.
Over 3 years after my first covid infection - still can't really taste or smell - I'm medicated for adhd, and I feel almost like how I was in March 2020.
That's the issue with these anecdotes
But then I _got_ COVID and I can tell you COVID brain is real. Even after I had recovered physically there were a few weeks of obvious cognitive degradation. One of my first days testing negative I was trying to implement some pretty basic pagination logic but when it came time to writing the algos for it, it was like my body flipped a switch and I would get impossibly drowsy and have to go lie down.
I've had covid twice since then without the same problem but it is very real and wild.
https://doi.org/10.1016/j.neuron.2022.10.006
SARS-CoV-2 is known to cause brain damage, endocrine problems, and circulatory issues which impede oxygenation. Of the brain.