[monkburger]

There is clearly an entity of hEDS with a yet-to-be-discovered gene. However, the clinical criteria are not very specific and the diagnosis has been given out both for people who don’t fit the criteria and for people who do but are unlikely to have the originally intended underlying disease process. This is driven by several factors including physicians who aren’t strict about diagnosis, supplement companies that use this to push whatever they are peddling, and patients who want a diagnosis for the sake of having one or other reasons mentioned here.

[cjbgkagh]

There is a sub group of hEDS which are not that flexible, understand that someone like me who is extremely hypermobile could not get a diagnosis in any amount of time and the implication that has for people who are much less hypermobile yet clearly have the cluster of comorbidities of hEDS. The core problem is that doctors simply are not good at statistics, like unbelievably bad at it. It is a an essential component of their job and in my view being so bad at statistics is malpractice. When you’re good at statistics this stuff sticks out like a sore thumb - you can’t miss it.

[monkburger]

Being 'bad statistics is malpractice' is just wrong on so many levels.

Medical malpractice requires a deviation from evidence-based practice that results in harm.. hEDS is diagnosed based on guidelines, not just "obvious statistical patterns.".. If diagnostic criteria exclude certain patients, that reflects the current medical consensus, not physician incompetence. Med schools teach Bayesian reasoning and differential diagnoses, not just pattern matching.

If I incorrectly diagnosed a patient with hEDS without ruling out vascular EDS (vEDS) and the patient suffered an undiagnosed arterial rupture, that would be actual malpractice.

If a subgroup of less hypermobile hEDS patients exists, the solution is research, not accusing physicians of malpractice for following evidence-based guidelines.

[cjbgkagh]

'Medical malpractice' is different to 'malpractice' in general. The first is deviations from standard care the second is a dereliction of duty. I think it is every doctors duty to get good at statistics. Clearly the Bayesian statistics classes have not been sufficient.

If you consider the role of doctors to be finite state automata that execute instructions handed to them from standards bodies then we wouldn't need anything nearly as sophisticated as a LLM to replace them, a collection of decision trees would be sufficient.

Your input on the topic has not dissuaded me from my belief that doctors in general are bad at stats and therefore bad at their jobs.

[monkburger]

I don't care to dissuade you from anything - you are flat-out wrong on things.

In my opinion, hEDS is a real condition, but sick-tok is causing patients to demand from physicians a dx - regardless if they meet the clinical criteria for it or not.

Stick to your lane.

[cjbgkagh]

That you're not thinking the implications of this through to their obvious conclusions demonstrates for all to see why statistics and logic skills are important. If you were to tell me that doctors are actually good at statistics then maybe we could have some sort of discussion - but you know that they are not.

I would hazard a guess that I've read far more books and scientific literature on hEDS than you have - and I have the statistical background to understand it. It's a condition that is important to me. I think you're the one who should get out of the lane - you clearly don't know what you're talking about. My reference to the error bars on published figures of propensity of hEDS over time should have been an obvious clue.