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Something I've noticed after a couple of years of working in #MECFS research at Stanford is how immediately (and perhaps unknowingly) patients try to convince me that their illness is real when they come in for a study visit. It breaks my heart because 1) of course it's real,
2) the fact that our health system has screwed over these patients so badly to get to a point where they are immediately on the defensive is a massive failure,
and 3) many patients don't know that I've sat in the seat they're in, and that I know how painful it is to fight an uphill battle with physicians who are basically laughing in your face
(I don't like to talk about my own illness history because that's not the point of the study visit, but I'll mention it if it feels appropriate).
ME/CFS patients should be able to walk into a medical office comfortably without having to prove or defend anything. Period.
#pwME
#pwME
