Long Covid (probably a form of ME/CFS triggered by Covid) is one of the worse diseases one can get. It invalidates you as a person physically and mentally and t

Long Covid (probably a form of ME/CFS triggered by Covid) is one of the worse diseases one can get. It invalidates you as a person physically and mentally and there are no solutions around. At the same time you are gaslighted by doctors and people because there is no clear diagnosis. My wife is already on her 3rd year and I just could witness first hand how shallow is the knowledge of most doctors, how they have zero curiosity or enthusiasm to help and especially in Europe, how are they extremely averse to try anything with the "do not harm" in mind. They think that doing nothing is better than trying a non-approved treatment and I'll put an example. My wife had a respiratory tract infection back in October which probably got while going to the GP by the way. With Long Covid her immune system seems very compromised, she never leaves home if it's not imperative because even with a wheelchair is too much effort. I don't attend almost any social event and I take a lot of precautions. Anyway, with the infection she was coughing blood for 3 days and then she was unable to breath properly, having drops of oxygen saturation down to 86% and waking up breathless in the middle of the night. She documented her symptoms very well including her saturation measurements. The GP just told her to wait for a few weeks for full recovery and everything will be back to normal and he literally said he had no time to read her notes. She asked please to get an oxygen concentrator or at least be sent to a pulmonologist. This request was denied and of course the only option she had was to buy the concentrator on her own which helped a ton. Probably if she got it the 1st year she would be much better by now. She is taking like 10 supplements and medications, she is using infrared light, oxygen concentrator, wheelchair, special pillows, asthma inhaler, etc... All this helps her to have a bearable existence but guess what, not a single thing was proposed and prescribed by the doctors. Almost everything she takes is based on small studies from internet and experiences from patients. Mostly from the USA where doctors are much more open minded and willing to take risks which is necessary when your default baseline is almost like being a tetraplegic with dementia and chronic pain. She has to get pretty harmless drugs like Sulodexide (a blood thinner) from other countries in a shady way because the Doctors in the Netherlands won't even prescribe this. There is some progress in diagnosis or biomarkers detection and some promising studies for cures like monoclonal antibodies, antivirals and others. But meanwhile it's a pure nightmare to live with Long Covid.