Sorry to hear that @pattismith I guess everyone is waiting for the magical "reset" button.Hello Mary,
unfortunately after one good month it stopped working and I stopped Tibolone. I started bleeding and the pain came back at the same moment, very similar to my ancient dysmenorrhea.
But any good day, or good week I can have are gifts that help me going through the bad days. There was a time (years ago), where I knew only bad days, and I remember how hard it was.
I now know autoimmunity, autonomic nervous system defect and small fiber neuropathy are involved in my disease, so I guess the good days can be either the result of my experiments or the natural variation of the disease; It's hard to say sometimes!
Dichloroacetate sodium (DCA) or a fibrate drug (Bezafibrate) might be alternative metabolic enhancers to explore next.
Yep, I would emphasize: if you have ME/CFS, then playing with metabolism altering drugs is VERY RISKY - even when the known side effect profile is small in healthy populations. I tried Meldonium and experienced a partial crash. The anecdote might be useful in the future for some, but I recommend staying away from this particular substance.
Since you looked into these drugs, how would you risk assess bezafibrate?
In the Coronavirus thread, I'm discussing it because I found some fascinating on bezafibrates role in reversing cytokine storm (one cause of death by nCOV-19) by preventing an ATP crisis. So, I've always been meaning to have some on hand, just in case. (I've had severe viral infections with some degree of cytokine storm twice, causing and worsening my CFS.)
Seems fairly safe, especially for short term use (as in treating viral infection) and considering ME/CFS patients have no known fatty acid oxidation issues (right?).
I have been following a guy called peter @ hyperlipid for a few years and he would argue that you should avoid antioxidants with increased fatty acid oxygenation as it is the ROS which generates the insulin resistance signal.An increase in fatty acid oxygenation would increase ROS too - so I would take plenty of antioxidants.