None of those have made the tiniest bit of difference for me in terms of energy level or PEM, including regular shots of B12. All that did was exhaust me from having to drag myself to the clinic every week, and I ended up going from a level that was deficient to one that was critically high without any positive change to the way I felt.
I have Ehlers Danlos Syndrome as well as ME, which means that my collagen is defective. Taking collagen supplements obviously does absolutely nothing to treat EDS because the collagen is "broken". With ME, our mitochondria are "broken", and also can't be fixed with nutritional supplements. Much the same way that someone with a broken arm can't take supplements that support healthy bones to treat it without getting a cast. There is no "cast" for ME. There are no treatments for ME. Supporting and improving mitochondria that are broken to begin with doesn't really do anything. Until science figures out how to reset the broken mitochondria to bring them out of their dauer-like state, there is no treatment for ME.
If you have Severe ME and you have found things that help you feel better, I'm genuinely glad for you. Those things are in no way a "treatment" for ME though, and by characterizing them as such, you are delegitimzing the extremely disabling nature of this disease.
In reply to With all due respect, I think by Kelly
None of those have made the tiniest bit of difference for me in terms of energy level or PEM, including regular shots of B12. All that did was exhaust me from having to drag myself to the clinic every week, and I ended up going from a level that was deficient to one that was critically high without any positive change to the way I felt.
I have Ehlers Danlos Syndrome as well as ME, which means that my collagen is defective. Taking collagen supplements obviously does absolutely nothing to treat EDS because the collagen is "broken". With ME, our mitochondria are "broken", and also can't be fixed with nutritional supplements. Much the same way that someone with a broken arm can't take supplements that support healthy bones to treat it without getting a cast. There is no "cast" for ME. There are no treatments for ME. Supporting and improving mitochondria that are broken to begin with doesn't really do anything. Until science figures out how to reset the broken mitochondria to bring them out of their dauer-like state, there is no treatment for ME.
If you have Severe ME and you have found things that help you feel better, I'm genuinely glad for you. Those things are in no way a "treatment" for ME though, and by characterizing them as such, you are delegitimzing the extremely disabling nature of this disease.