It'sME(Jaime) Profile picture
Scientific Director, #MEAction Stanford Med TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own exceedhergrasp1@bsky.social (really not on X anymore!)

Feb 18, 2023, 7 tweets

Went for a routine test. Tech’s son had #POTS. Showed her my compression socks. But not everyone wants to chat about health, right? So I asked if she wanted to hear more… (1/)

Her: “We know NOTHING! My Kaiser insurance sent me to this MLM, timeshareish scam & told my son to “tell himself he’s safe” when his heart rate increases.”

“They asked lifestyle stuff but he eats healthy & exercises already. They said symptoms were ‘normal for him’.” (2/) #CBT

When she said ‘nothing’ she meant NOTHING, folks. Nothing about compression socks, nothing about recumbent exercise, nothing about avoiding high carb meals, nothing about increasing water intake, nothing about meds. Just patient-blaming CBT & eat more salt. (3/) #POTS

We moved to an empty office where we chatted for an hour+. I think this poor lady’s lunch…

“I don’t know what to do,” she said. “We [parents] knew we were being scammed. We knew my son couldn’t think his #POTS symptoms away but that was all they had so we gave up.” (4/)

We need to root out these therapies delivered this way. Clinicians, check your patient education modules on these diseases and ensure they are USEFUL and ETHICAL. Not a six hour course with negative patient value, so insurance can claim care was delivered. (5/)

We need to ask not whether we have something to offer, but whether we have something useful to offer.

(And yes, I also told her: I’m not a doctor and none of this should be taken as medical advice.) (6/6)

Because so many people had asked, a quick thread on #POTS, what it is, and some general management stuff:

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