Comment by dimal
I’ve had chronic fatigue for long stretches my entire life, sometimes for years at a stretch. I think I would qualify for a CFS diagnosis, but no doctors treat it, so no one ever thought to diagnose me. They’d just say my tests are fine and shrug.
The fact of the matter is that the medical industry has no clue what to do about chronic health conditions like ME/CFS or Long COVID. They have no game plan at all. Everything I ever did to improve my symptoms and get my energy back was stuff I either did myself or just dumb luck that my body recovered.
> Instead of funding novel medicines like Ampligen, the NIH has directed most of its RECOVER resources to observational studies designed to learn more about the condition, not treat it.
So, this seems like a good decision. Observational studies aren’t giving up. They are the basis of the whole “evidence based medicine” pyramid of evidence.
It's come to fascinate me how modern medicine is simultaneously miracle-performing and devastatingly primitive. We can repair tiny structures, regrow organs, eradicate diseases from existence. And yet, you could fall unwell with something like ME/CFS which ruins your life, and medicine has literally nothing to give. A total blind spot.
Perhaps a reality check that the human body is immensely complex, and medicine is not magic. We've just been doing our best all along, and we need to continue doing so with support for medicine and science.