easy to say “it’s not me, it’s you” and walk away from them…or as a *caring* public health official once uttered, let them “fall by the wayside”. In fact, most clinical trials don’t try to figure out why someone responded vs. didn’t respond so long as the study worked out. 6/ - ThreadSky

putrinolab.bsky.social • 186 days ago

easy to say “it’s not me, it’s you” and walk away from them…or as a *caring* public health official once uttered, let them “fall by the wayside”. In fact, most clinical trials don’t try to figure out why someone responded vs. didn’t respond so long as the study worked out. 6/

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putrinolab.bsky.social•186 days ago

Therein lies a problem with blindly relying on evidence-based practice: it only tells you so much about what to do, until you have a non-responder. Or perhaps phrased more eloquently by Iron Mike: “everyone has a plan until they get punched in the face”. What happens when a 7/

putrinolab.bsky.social•186 days ago

clinician or scientist that gets (ego-)punched in the face (has a patient that isn’t responding to their usual tricks) can tell you a lot about that person. There are a lot of maladaptive responses: gaslighting, hiding behind credentials, creating hierarchy between patient and 8/

jennsmo.bsky.social•186 days ago

💯💯💯

putrinolab.bsky.social•186 days ago

provider, getting angry at the patient, ignoring the patient, etc. Or you could choose to do the work: partnering with the person in your care, reading more, listening and actively problem solving, referring to a clinician who is more experienced. All of the former are easy, 9/

putrinolab.bsky.social•186 days ago

all of the latter are hard. You can see why the majority of busy, overwhelmed clinicians choose the former. Anyway, back to exercise: pre-2020 if you were a POTS expert, you could use the old rule book and more often than not you’d win. What’s more: you were usually a SAVIOR. 10/

eha.sh•185 days ago

Yuuuup. I am a patient with severe ME, I went to see an experienced POTS specialist with no knowledge of ME, and she pushed me to significantly increase activity levels. I attempted to explain why that wouldn't work and pointed to the Mayo Clinic CME. She ignored me, I ignored her bad advice.

putrinolab.bsky.social•186 days ago

People had been to doctor after doctor telling them they had a functional disorder or anxiety or needed to exercise more, and here they came to you and you treated the hell out of their POTS and you were a hero. Now, here’s the wrinkle: many pw POTS, after being gaslit for so 11/

putrinolab.bsky.social•186 days ago

long and left to figure things out for themselves, will learn to (correctly) associate being active with worsening symptoms. In these situations, once rehabilitation begins they may need gentle encouragement to engage in rehab that increases in intensity. To be clear, though: 12/

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