Unfortunately those devastating conditions are exactly where the grifters prey upon people. Some of the people pushing the treatments aren’t grifters in the traditional sense, but they are so invested in the idea of becoming famous for having cured a difficult disease that they lose objectivity and can’t admit when their treatment isn’t working.
There is a lot of history in this. Cancer and autism communities have fallen victim to these schemes as far back as those conditions have been recognized. Every year there is a new batch of researchers who claim they’ve found a cure but the government meanies are preventing them from curing the whole world. They generate a lot of false hope, take a lot of money from desperate patients, and then fade into obscurity after the communities realize nobody is actually getting cured by these treatments.
This happens in every condition where there is not yet a good medical treatment. Long COVID is a good example of a recent condition where hundreds of doctors have claimed to have invented new treatments. They generate a lot of headlines, collect a lot of money from desperate patients before everyone realizes the cure isn’t working, and then they abandon their cure like it never existed.
This is why governments regulate these things. If you assume all of the treatments might work, it seems cruel for governments to get in the way. If you look at the history of how this plays out, they almost never actually have any substance behind them. It’s almost 100% grift or researchers who can’t admit when they’re wrong.