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Comment by calibas | Hacker News Reader

I have a friend with Ehlers–Danlos syndrome, a rare connective-tissue disorder. She spent years in pain while the doctors told her there was nothing wrong, and that it was just in her head.

It was only seven years ago that they updated diagnostic criteria to include her form of EDS, and it took her a few more years after that to get diagnosed. Now the doctors take her very seriously.

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Considering how common some version of this story is, and based on my own experiences as a patient, I'm convinced that most doctors lack a functional understanding of conditional probability. They seem to think that if the prevalence of a disease in the general population (or a specific patient's age/sex/racial demographic) is low, then the probability of someone presenting with signs and symptoms of the disease having it is also low, even if there's no better explanation.

Could there be a hundred people claiming fantastical symptoms for every one person who's genuine?

the reality is that very close to 100% of people have ambiguous, transient pain and a large number of them come to the doctor asking for something to be done (and also mix in people who are fishing for pain meds, really are hypochondriacs, or really are experiencing something psychogenic)

in a practical sense, it's extremely difficult to narrow that down to a specific actionable cause, and the system is simply not set up to deal with this stuff

>They seem to think that if the prevalence of a disease in the general population (or a specific patient's age/sex/racial demographic) is low, then the probability of someone presenting with signs and symptoms of the disease having it is also low

Because it is also actually low. Signs and symptoms aren't exclusive to specific diseases.

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