My pre-virus-like CFS started from a crash following a doctor improperly taking me off steroids. The next day I went into a kind of hypoglycemic crisis, got extremely shaky, disoriented, off-balance, etc. All I could think of was stuffing food into my mouth, at a kind of pre-cognitive level.
After I ate, I was *extremely* tired, and went to lie down and sleep for a while. When I woke up a few hours later, I wasn't really any less tired than when I crashed, and I never got better for months after that, until there was some gradual improvement from taking adrenal cortex extracts, etc. But from then on I always had post-exertional malaise, much less endurance, sleep disturbance, etc.
Then flash forward to a few years later. I drank some cranberry juice one day (yes, cranberry juice), and the next day I crashed really bad again, similar to the first time. After being wiped for about a week, I upped my co-q 10 dosage from 100mg. to 200mg, and I had an immediate improvement.
So in my experience there is some kind of glucocorticoid dysregulation that somehow affects cell energy and glucose metabolism, electron transport chain functioning, etc. Most likely this originates almost totally neurologically, and the cellular metabolic effects are actually only secondary. Something in the neurology related to glucocorticoid receptor function and whatever downstream neurobiological effects that has (e.g., on NMDA receptors, catecholamine function, etc.) is driving it. That's why some people don't tolerate co-q 10 and have BP effects, etc. -- they don't need it! They need something else specific to their metabolic profile, blockages, etc. The driving factor is neurological, HPAA, NMDA, etc. and then the downstream effects at the cellular level manifest differently depending on the profile of the individual. Some people have certain electron chain blockages, and need co-q 10, some need B1, some have methylation issues and need folate or b-12, etc. The primary dysfunction is neuro, the secondary effects are just "amplifications" of the idiosyncratic dysfunctions of each individual (imho).
I also know this neuro connection is true for me (for pre-virus CFS, maybe not viral CFS) because about a year after the initial crash, I got an EEG neurofeedback amp, and did some neurofeedback. After one of the early sessions, something "clicked," and I had complete and total CFS remission, 100 percent gone, energy back to normal for about 4 days. I was completely stunned. Just smooth, unlimited "normal" energy all day, it was really remarkable. The NF practitioner I was working with didn't have a lot of experience with CFS, and recommended I continue with more training to consolidate the gains, etc. (their model consists usually of the idea of long-term training with small incremental gains), but that whacked something out and I went back into the CFS state. Placebo effect? Maybe. But no matter how I "tested" it, the fatigue was totally gone. And you really can't fake that, even to yourself.
So apologies for morphing into that neuro tangent, but I wanted to tell my experiences with co-q 10, which definitely has pro-energy effects in CFS, imo and experience. I've also noticed subtler improvement from it over the years, most often in a negative way from feeling noticeably worse after not taking it for a while, and then getting more again and noticing an immediate boost. I now take at least 100mg. a day without question and usually 200mg. a day (Jarrow). I wouldn't go much above that orally, as co-q 10 can be a pro-oxidant at higher doses - although I think it would be very interesting to think about IV co-q 10 and what benefits that might have. Has anyone had or heard of co-q 10 being administered IV?
