[cjbgkagh]

Doctors 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.

[deng]

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.

[cjbgkagh]

Unless you’ve had ME/CFS you cannot understand how bad it is, I’ve had it and I still have a hard time comprehending how bad it was, I am occasionally reminded and it’s easy to forget. While it won’t kill you it’ll destroy your life until you’re ready to kill yourself.

The UK led the world with explicit psychologizing of it in large part to prevent insurance companies being liable for such an expensive and debilitating condition. A legacy that continues to this day, the main people responsible are still very influential. Fauci was instrumental in diverting research away from the autoimmune aspect and preventing a lot of important research. The $1B set aside for LongCovid appears to largely have been wasted. The official classification for hEDS was explicitly changed to reduce the number found so that it could remain a rare disease and continue to have access to specific funding for rare diseases (goal seeking). I could go on and on. It is a highly dysfunctional industry with many perverse incentives pulling it in all sorts of directions. There was the healthy at any size movement despite obesity being a massive cause for mortality, perhaps the only stronger signal would be smoking and consider how long it took them to figure out smoking.

There have been insanely impressive improvements to medical science but this seems to be largely due to tooling and access to information rather than the lumbering bureaucracy which appears to do very little of benefit.

[121789]

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.

[cjbgkagh]

’fundamentalist’ has religious connotations which I did not intend, I meant deduction from first principles not foundational orthodoxy. My expression was there was tension not completely discrete factions, there is clearly some empiricism used in medicine. One of the difficulties in getting published is defending a position and it’s easier to do this with a mechanism of action which I think slows things down too much. The pace of progress on my conditions might as well be none at all. Still no cure for a condition that’s been known about since Hippocrates.

So I’ve been doing this for over 4 years now, and commenting on this with this account for a bit less than that, so far no serious unwanted side effects other than the usual ones for semaglutide which went away. Of course that has a survivorship bias but in the forums people do often tell others what they’re about to try and we would notice if they stopped showing up.

[121789]

> My expression was there was tension not completely discrete factions, there is clearly some empiricism used in medicine. One of the difficulties in getting published is defending a position and it’s easier to do this with a mechanism of action which I think slows things down too much.

There is always tension between objectives in real-world systems. There are essentially two frontiers in our healthcare system--a core of educated professionals that are conservative and move slowly with ample evidence behind decisions, and a wide range of laymen who are comfortable with personal risk (e.g. bodybuilding community). I have respect for both, and they work together. The core will always have too many false negatives and the horizon group will have too many false positives. Saying the balance right now slows things down too much needs more support as an argument, there will always be things on the roadmap for medicine and there will always be edge cases that can't get addressed perfectly

From what I've seen medical researchers are champing at the bit for new areas of treatment that they think are promising and they just need the smallest amount of convincing evidence to research. If they don't have it for something you think is valuable, collect the information in a systematic way and find someone to send it to.