Thread by @PutrinoLab

@sunsopeningband Great question! Our data also supports that the majority of folks we see with LC have both metabolic and autonomic components (we see kind of a distribution of 15-20% of autonomic or metabolic alone, and 60-70% of a mix of both). I think the main point is that you can have 1/

@sunsopeningband both processes at play, but I don't have evidence at this stage that the processes are linked, they're likely separate: you have metabolic PEM AND autonomic PEM and one doesn't influence the other. For autonomic we take careful physical and physiological measurement at each 2/

@sunsopeningband session in order to measure the extent to which someone's ANS is activated on the day, as well as to track progress (10m stand, HRV (SDNN), HR/BP changes through positional transitions), for metabolic it is very tough (we're going to release some research on this ASAP), but 3/

@sunsopeningband in the clinical setting, this is where clinical experience and listening to your patient is key: having a sense of what your patient can handle of an autonomic rehab protocol is KEY. Jenna Tosto-Mancuso who designed our rehab protocol differentiates the approach to progression 4/

@sunsopeningband of autonomic rehabilitation in #LongCovid and #MECFS as "symptom-titrated", moving away from using an erratic/unreliable metric like heart rate. Symptom-titrated progression means that the patient is in charge of communicating the appropriate intensity of rehab and you use 5/

@sunsopeningband instruments like the Borg perceived exertion scale to titrate intensity of autonomic rehab - because that allows you to respect the limitations of metabolic-driven PEM. It also means that you WILL hit a ceiling of rehab efficacy in these patients. They might experience very 6/

@sunsopeningband slight (but functionally significant) gains from autonomic rehab only, and then they maintain those gains without pushing further. We should normalize PTs sending patients back to physicians explaining that the patient has reached the limit of rehab efficacy and further rehab 7/

@sunsopeningband is not indicated....but that's a separate issue. At this stage (and per my metabolic PEM thread) we need better metrics for real-time indicators of abnormal oxidative stress and mitochondrial dysfunction (working on it). In the meantime, skilled clinical practice must guide (end)