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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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i'm in the midst of watching this video and one slide Dr Newton put up really seems significant. She says that 89% of her patients have orthostatic intolerance.
That has not been likely for quite a while. There are clearly things going on in the brain, and other things in the muscle. Even when the muscle tissue is removed we see problems in the lab. So it cannot all be the ANS, unless somehow this induces epigenetic or other long term regulatory changes. That still leaves the question of just how much of it is the ANS.
This is what the Lights have looked at. At least some of it is due to acid sensing receptors on the cell surface. As acidity rises we feel more fatigue. This is not the whole story though.
We also have to consider other types of OI, including NMH, neurally mediated hypotension. Not everyone with ME has POTS, only a minority, but most have either POTS or NMH, and there may be other variations.