Thank you! Appreciate your advice, that is what I know about this illness, since I am homebound, I am not going to worsen my fatigue more by doctor trips in hopes of questionable benefits. And like I said earlier, even people who are at 80% are trying these questionable treatments, and getting worse. If I ever get to even 60%, I'm still gonna stay put and not try anything 'radical'.
There are some studies that have shown treatments to be effective for anywhere from 30% to 80% of patients, but no honest research showing higher rates of effectiveness. The big issue is that promising research is either not repeated, or can't get published, the psychs are often the peer reviewers in many publications. Lenny Jason's systemic review is a good place to start looking for 'hard science',
One really does have to make an educated guess what might be wrong from the symptoms then have tests commissioned to check the hypothesis. By and large most ME patients seem to be very much more likely to have severe side effects with 'conventional drugs' than nutritional supplements, though some do show massive improvement from the same drug that caused permanent damage to another.
My personal issues were primarily disturbance to diabetes varying with fatigue level (fatigue first). This varied from genuine insulin resistance (cured completely with Ribose + Alcar + CoQ10). With lower fatigue, very high Dopamine (top of normal range), double expected Cortisol, elevated Epinephrine - higher Insulin doses dealt with this, however by virtue of being variable it makes stability a thing of the past and requires constant dosage review.
I also suffered polyuria needing many pints of water per day to maintain health, at worst urinating 14 litres of urine per day. With less severe polyuria, my BM/Cortisol/Adrenaline issues resolve rapidly with Saline, hence some connection to blood volume seems likely. I tried liquorice extract for this which (as per research results) improved Polyuria, but further raised Cortisol.
As expected I also suffer marked OI, my brain fog also lifts with saline, hours after the cessation of saline my blood sugars continue to fall stabilising some 12 hours after and starting to rise despite polyuria.
I had a neutrophil mito test showing 65% of normal ATP production and impaired transport of ATP out of mitochondria.
For me Ribose + CQ10 + Selenium (I was deficient) + R5P produced marked improvement but only when left alone by family. My home-life is extremely stressful and the benefits only show when I am left alone. Hence they increased basic energy, but not the severity of PEM.
The Polyuria (and low Selenium) may be down to high Cystine (established well above 95% by population) but I am awaiting medical action that so cannot comment on the effectiveness.
Melatonin (with high fatigue) massively improved sleep (shorter and much deeper, more restful). Alcar + Ribose (1 hour before bed) also surprisingly improved sleep.
High doses of Vitamin C (10-15g/day) produced improvements in mood & inflammation & constipation.
