before times. If you speak to most #LongCOVID, #MECFS or chronic #Lyme experts they will tell you that probably >70% have POTS or dysautonomia that contribute to their overall symptom burden in some way. This means that theoretically these people could benefit from POTS 14/ - ThreadSky

putrinolab.bsky.social • 188 days ago

before times. If you speak to most #LongCOVID, #MECFS or chronic #Lyme experts they will tell you that probably >70% have POTS or dysautonomia that contribute to their overall symptom burden in some way. This means that theoretically these people could benefit from POTS 14/

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putrinolab.bsky.social•188 days ago

interventions, but there is one incredibly important caveat: they don’t just have POTS, they have POTS + PEM as a result of their IACC. This complicates things. Post-exertional malaise (PEM) is crushing, dangerous and can be worsened by anything that makes the body produce 15/

putrinolab.bsky.social•188 days ago

energy. If PEM is mild or moderate, it is possible that people with PEM + POTS can sometimes tolerate some autonomic rehab and make real, meaningful gains so long as the clinician is PEM-informed and knows where to stop. It isn’t perfect, but the balance of treating POTS 16/

putrinolab.bsky.social•188 days ago

whilst respecting PEM is possible. However, if someone has severe PEM, sure - they can have POTS as well, but the diagnosis of POTS honestly becomes a little moot - if you’re so sick with PEM that you can’t tolerate light, or brushing your teeth, or rolling over in bed? Let’s 17/

putrinolab.bsky.social•188 days ago

try to figure that out before we go any further. And let’s be clear: there is precedence for *not* trying to exercise through illness: if someone had Duchenne’s muscular dystrophy and told you they couldn’t walk to the bathroom easily anymore, you wouldn’t ask them to do that 18/

putrinolab.bsky.social•188 days ago

because exertion would accelerate their muscle breakdown. If someone with end-stage ALS tells you the glare from a window in their room is making them fatigued, you would pull down the shades and block that for them. Yet, somehow people with IACC seem to not be worthy of the 19/

desuet-punk.bsky.social•170 days ago

With some heart 💜 conditions too (aerobic) exercise is not so good even if you are still able to do them (? Cardiomyopathy hypertrophic) ? ?

putrinolab.bsky.social•188 days ago

same consideration from clinicians. We ignore the science showing that people with PEM are in energetic crisis (Wust et al) and/or experiencing heart failure during exercise (Systrom et al) and stick with the deeply flawed framework that the best way to fix someone who can’t 20/

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