-
Fact sheet drafting HERE! Fact sheet #4 - Management of severe and very severe ME/CFS - comments by 21st April please
The Paradox of Modern Medicine—The Atlantic
- Thread starter Jaybee00
- Start date
“A new piece from me at @atlantic: Modern medicine has diagnosis crisis, which isn't just about rare diseases — a huge number of people with #longCOVID, #MECFS, & more go needlessly undiagnosed b/c patients aren't listened to, as Alexandra Sifferlin shows in her excellent new book”
Felis Catus
Senior Member (Voting Rights)
“Still, beyond these unforced errors, there are more zebras than physicians are often willing to admit. Perhaps the worst mistake a doctor can make is not their believing that they know everything but their acting as if everything is known. Today, millions of people live with poorly understood chronic illnesses—myalgic encephalomyelitis / chronic fatigue syndrome, autoimmune diseases, long COVID—that don’t fit cleanly into established categories or show up on tests in their early stages. Sifferlin quotes from the work of the anthropologist Abigail Dumes, who has argued that the rise of evidence-based medicine had the unintended effect of excluding these conditions from “the trappings of medical legibility.”
There are layers of problem here. It's not clear if simply dedicating more time would help, if the quality of that time doesn't improve. It should, when real experts are involved it almost always does, but it's not as if the few people who have dedicated their career to this have done particularly well, in some cases they are responsible for how disastrous things are.
There is a problem of quantity, of not enough units of time, money and expertise and so on, but there is also clearly a problem of quality, which no amount of increased time will fix. Long Covid has provided a harsh lesson on this. Millions of clinician-hours have been dedicated to it, and somehow it's almost all useless. It could literally all be erased as if it never happened and nothing of value would be lost. So much research has been done on LC, and almost none of it is any good. Problem is that all of this is acceptable to the decision-makers, which is what's impossible to understand.
It's hard to see things improving until medicine itself improves, and that's something only they can do, they must choose to do, on the basis that they have performed miserably, with horrible consequences, which I just can't see them doing. There's something missing in the whole and at best it's plain weird, other times it's just the bad part of human nature, operating freely in a context that should demand quality, yet clearly couldn't care less.
It's also way too obvious how much of this is based on magical thinking, myths and odd beliefs that the medical profession wants to be true every bit as much as the average person. Which is an aberration, it should not even exist, but it seems about as impossible to fix as dismantling a generations-old aristocracy.
And so is this. We are not excluded from evidence-based medicine, we are intentionally miscategorized and the quality of the work is abysmal, all entirely on purpose. Chronic illness is simply not taken seriously, as a choice. Bad evidence is still used as evidence. In fact it's entirely on the basis of this mediocre evidence and this general indifference that all sorts of false things and failures ride on.
There is a problem of quantity, of not enough units of time, money and expertise and so on, but there is also clearly a problem of quality, which no amount of increased time will fix. Long Covid has provided a harsh lesson on this. Millions of clinician-hours have been dedicated to it, and somehow it's almost all useless. It could literally all be erased as if it never happened and nothing of value would be lost. So much research has been done on LC, and almost none of it is any good. Problem is that all of this is acceptable to the decision-makers, which is what's impossible to understand.
It's hard to see things improving until medicine itself improves, and that's something only they can do, they must choose to do, on the basis that they have performed miserably, with horrible consequences, which I just can't see them doing. There's something missing in the whole and at best it's plain weird, other times it's just the bad part of human nature, operating freely in a context that should demand quality, yet clearly couldn't care less.
It's also way too obvious how much of this is based on magical thinking, myths and odd beliefs that the medical profession wants to be true every bit as much as the average person. Which is an aberration, it should not even exist, but it seems about as impossible to fix as dismantling a generations-old aristocracy.