alt Hacker NewsDoctors have been maligning ME/CFS as psychosamatic for decades and generally still do despite a large amount of modern evidence to the contrary. If you have it it’s clearly not, you can get good and bad days that are clearly not dependent on psychological state. In addition I have it due to hEDS which is a condition that is almost never diagnosed due to aforementioned blind spots. Most doctors still think the prevalence rate is 1/50K despite continued research raising that number to 1/15K and 1/500. It takes a long time for this information to percolate through the system.
Doctors, like many professions, have institutional blind spots, I studied these in my search because I was looking for something that had not been found. Most doctors have to consider all people and all conditions, I only have to be concerned with one.
Notably they only recently adopted Bayesian statistics for medical trials despite that math being around for hundreds of years.
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I don't really understand where you are going with the fundamentalist vs. empiricist holy war narrative. Medical science is very empiricist, but it is conservative.
Yes they will miss rare cases or where symptoms aren't quantifiable or where no understood biological mechanism exists. Yes you can take on research and treatment yourself with the risk associated. No a bunch of anecdotal evidence on experimental treatments do not substitute for structured research. No you won't come back here in 3 years if you develop serious side effects that would have been identified in clinical trials and tell everyone you were wrong.
I completely understand your frustration with the lack of knowledge and research in ME/CFS. It's a scandal, given the prevalence and seriousness of the condition. Unfortunately, after Covid, ME/CFS was even more politicized as part of the long-Covid discussions and got caught up in the culture wars. I have several friends with ME/CFS and they basically say the same things you do - ignorant doctors, high cost due to medication usually being off-label and not covered by insurance, and even friends don't take the condition seriously.
ME/CFS research is severely underfunded. The reasons for this are not simple, it's partly due to the complexity of the disease which, as cynical as it is, does not make it an attractive research topic for ambitious scientists. Same goes for "Big Pharma". Clinical trials for ME/CFS are extremely complicated, and hence expensive, due to the myriad of symptoms in how the condition can appear. It makes research in this area very difficult and expensive. There's very little funding for ME/CFS research, and that needs to change. Unfortunately, especially in the US, this is not going to happen for Kennedy reasons.
The Bayesian statistics thing is a bit of red herring, though. While your are correct that the math is old, the needed compute resources for doing Bayesian modeling on large trials was simply not there until recently. But it is also correct that it also took a long time until there were official rules regarding this from FDA and EMA. These regulatory things move very, very slowly.