Regarding Dr Davis and his recent research.....
At my worst with ME, I waste away to the extent I have been accused of having anorexia, or paranoid about food due to phobias (56lb weight loss despite eating MORE). Because I followed research even then, I had a test on urinary metabolites for the Kreb Cyle (correct me if I'm wrong) but whatever it was, it showed very high urinary citrate (at rest).
Sound familiar to anyone?
The doctor said a Mitochondrial disorder might explain why I was so underweight and muscles wasting away,(they asked if I had HIV in ER) as apparently I had catabolic state of muscle damage. (e.g. your muscles are used by the body as a source of energy - at rest!). The muscle biopsy was normal though. I had uncontrolled starvation feeling (like a permanent low blood sugar feeling) but worse.
Each time I relapse massively and end up bedridden this exact phenomena happens (over a decade), and it always starts with an infection. I tfeel like I'll starve to death and will collapse from a vital lack of something - hormones?. When I eat sugar, it only goes off a bit, then gets massively worse (excess insulin?) after. If I don't each sugar at all, I literally don't have the energy to breathe. It got to the point every few hours I had to eat sugar, and if not, I'd start getting respiratory problems and by autonomic nervous system would go crazy. My breathing also goes deranged, like I don't know how to breathe and I have to consiocusly breathe or there is no 'impulse'. (Reverse of hyperventilation).
It nearly killed me one day (circulatory collapse and respiratory emergency in resus which showed hypokalemia and high white blood cell count). It gave me daily cardiac arrythmia's, panic attacks, a pain in my back (kidneys?), unbearable stomach pain, chest pain and a sensation of feeling profoundly faint (much worse tha normal ME/POTS faintness), as in on the floor amazed you're still conscious. The pain was of ofcourse much worse than usual, like you're full of acid. I went from being housebound, to unable to even sit upright. Each time this feeling 'sticks' I eventually end up Hospitalised, usually for 6 months+ at a time as I am so weak and 'no one knows why'.
I wonder if it's to do with an autoimmune attack on mitochondria? It feels a bit like being in shock, like an emergency feeling you must get help or perish, like something essential to life-force is absent.
Twice I managed to get some tests done during an attack. One time, high 24hr calcium, another, low 24hr calcium. Inorganic phosphate and something else (phosphatase) always low. Also low blood sugar episodes and ketones in urine (without Diabetes, seen in starvation/anorexia interestingly and also severe pain).
Wanted to share as it might be interesting to see if this weid on/off attacks I get are something to do with ME and maybe Dr Davis's/Dr Navieux's research will explain it all. Someone once thought I had 'periodic paralysis', but I don't think there's a test for it, or you have to have it during the attack?
This is why ME is so dangerous. No one knows what 'it' is, and what 'it' can do, and each patient reports with different set of disabling symptoms, incorrectly presumed to be based on feeling fatigued when we have a massively complex multi systemic disease process.