List of diseases with a known mechanism but no cure/treatment

Creekside said:
I for one am very grateful that my GP was willing to write a prescription for it. It made a huge improvement in my quality of life. I don't regret any of the prescriptions I tried.
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That’s fine. But it’s also a completely different topic from «should HCPs prescribe LDN (or X) for ME/CFS?»

When you’re making rules on a societal level, you have to consider the consequences at the societal scale. I think I’ve talked enough about those here so there’s no reason to go over it again, but it’s safe to say that the benefits do not outweigh the risks and costs.
 
Mij said:
People are very ill and desperate and will take chances on unproven treatments.
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Isn't that natural? I think the safety and cost should be the issue rather than proven/unproven. Cumin or malic acid, for example, isn't proven, but people should not be barred from experimenting with them. Neither seems to have effect on me, btw, but there are people who benefited from it. I'd put something like LDN in similar category in terms of safety. Something that carries serious consequences should be weighed differently though, I agree.

I'll again resort to the analogy of getting lost in the wilderness. The best policy is to stay put where you are if you have faith in the recue chopper. If you are not sure though, you have to make a choice between dying of hypothermia or the slim possibility of finding your way home. I wouldn't want to deny the choice because I know better somehow. Unless I *really* know better.
 
Yes, safety is #1. Choosing to do nothing may be less risky (and less disappointing) than trying an unproven therapy with potentially harmful effects
 
Utsikt said:
That’s fine. But it’s also a completely different topic from «should HCPs prescribe LDN (or X) for ME/CFS?»
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I agree with that. I wouldn't want be required to accept an unproven treatment due to fear of being labelled "an uncooperative patient". CBT/GET is in that category. How many patients might have been afraid to refuse?
 
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