I have direct experience of this. My wife has had long covid for the last year, has had dozens of medical tests, and none of them have showed up anything except for POTS.
I can understand why a neurologist would suggest CBT. All my wife's test results are normal, so the neurologist has no remedies available. People do get psychosomatic illnesses, and in those cases CBT does help. That doesn't mean that my wife has a psychosomatic illness, but there's no test for that either - can't hurt to try
(FWIW this is not the way my wife saw it - she was pretty furious and felt like the neurologist was demeaning her condition)
Your wife is correct to be angry. I can relate to your comment - my gf is likewise suffering from long COVID.
I can also totally understand why a neurologist would suggest CBT, because as you say, they find nothing, and thus have nothing else to offer.
But it's clearly not just psychosomatic, so think-yourself-better like CBT can hurt and will hurt, because it won't work.
Current thinking - among numerous researchers (and fwiw, her specialist) - is that endothelial damage is causing long covid symptoms. There is some progress towards identifying the cause, if not the treatment, yet.
I have hEDS which can cause POTS and had the exact same experience. The Golden Girls covered it over 30 years ago https://www.youtube.com/watch?v=vVyLZTKDy2E and it is still the default response.
From your description I'm pretty sure she is thiamine deficient. Regarding POTS, that's just one of possible manifestations. And I saw more than one occurrence of POTS in people after covid.
They all recovered after B1 in form of TTFD plus supporting therapy.
I said she has long covid, including POTS, and apart from the POTS all medical tests are coming up negative/normal.
You don't know what tests were done, you don't know any of her other symptoms. I don't understand how you can be "pretty sure she is thiamine deficient".
If you are right and she can fix a year of misery by taking an over-the-counter supplement then I will be over the moon, but in order to convince her to try yet another remedy-suggested-by-someone-on-the-internet I'd like to hear more about your diagnosis
I can only imagine as you did not communicate them. But let me guess: fatigue, brain fog, possibly panic attacks, tingling/burning sensations in feet or hands, limbs numbing especially at night, the sensation of suffocation or dissatisfaction with breathing, the sense of a blocked nose while there is no stuff in there, headaches, spatial disorientation, loss of short-term memory, impacted ability to speak and learn new things, GI and cardiovascular issues. All that while having a normal (>= 96%) O2 saturation in the blood.
>I don't understand how you can be "pretty sure she is thiamine deficient".
She may have an acquired mitochondrial dysfunction caused by the oxidative stress induced by the active phase of illness. Which is unfortunately pretty typical for Covid [1] and 30% of survivors will have metabolic and neurological complications as the result, regardless of the severity of the original illness.
This is the first thing to check given the symptoms, but most of neurologists are unaware of it yet. You can do a formal test that checks for that condition: transketolase.
I am also including some materials that might help: [2], [3]
I can understand why a neurologist would suggest CBT. All my wife's test results are normal, so the neurologist has no remedies available. People do get psychosomatic illnesses, and in those cases CBT does help. That doesn't mean that my wife has a psychosomatic illness, but there's no test for that either - can't hurt to try
(FWIW this is not the way my wife saw it - she was pretty furious and felt like the neurologist was demeaning her condition)