Comment by elric
13 hours ago
It's a diagnosis that's made only after excluding a wide range of other potential causes for the symptoms (like brain damage, structural abnormalities, strokes, seizures, MS, infections, ...).
It's not just a case of "we don't know", it's a case of "we've looked at everything under the sun and nothing fits".
Sounds like one of those things that needs more research.
Saying to a patient "you have X" can communicate three different things:
- a casual diagnosis: your problem is caused by C
- a syndrome: you have this collection of symptoms which often appear together, we don't know what causes it, we may have some treatments that can help.
The difference between these two is often not communicated well, but they are valid diagnostic categories.
There is a bigger problem with the third one:
- we have done some investigation and don't think further investigation is worth doing.
This may be a correct judgment, or it may not. But it is not a property of the patient. Essentialising it to the patient is incorrect and potentially dangerous. Especially as, it's rarely the case that they've "looked at everything under the sun". There are many reasons for stopping before that - some of them valid, but some not.
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> needs more research.
Yes, but it also sounds like the initial stages of "research" should be taxonomy. Starting with QC'ing current testing & diagnosis standards, to have more confidence that the data is reasonably clean.