Problem with pyruvate, use fatty acid instead and produce ROS
Treat with antioxidants, L carnitine, d-Ribose, ketogenic amino acids, Q10, NAD+
GI dysfunction
Constipation: dietary adjustments, prokinetics, Avoid opioids and anticholinergics
For diarrhea: dietary, bile acid binders, opioids
Dysbiosis: probiotics, FMT
cardiovascular control (sympathetic nervous system)
for POTS - pyridostigmine, beta-blockers, ivabradine
IV saline infusions help severely ill
All of those systems are involved in #MECFS and many with #LongCovid
Few of the possible treatments have been subjected to placebo-controlled RCT. We need those, but there is no interest. Those drugs are already on the market.
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Funcap - Functional Capacity Questionnaire in #MECFS
How do you access functional capacity?
5857 responses from #MECFS patients (online anonymous, spread via social media)
Questions like "can you X? How often do you Y?" don't work, because it is context dependent. It depends on what else the patient has decided to do, doesn't take consequences into account