[cjbgkagh]

Certainly an understandable position. The information I'm talking about is very modern as affordable high quality WGS are a recent innovation and news of the implications has not yet spread very far. It's a good time to revisit old superstitions.

[90s_dev]

On the other hand, the latest research and innovations are often gravely harmful but touted as safe and helpful for a long time by the experts, like lobotomies.

[cjbgkagh]

That is reductio ad absurdum. There is neither an appeal to authority nor a risk of social contagion. Additionally all the treatments I have done are completely reversible upon cessation of medication. Is your disdain of expert opinion applicable to all expert opinion or only the opinions that you don’t like?

[90s_dev]

Not disdain, just skepticism. One too many experts have gravely misled me to damaging effect.

[cjbgkagh]

The psychosomatic view of ME/CFS was and in many places remains the expert opinion and one that I agree is misleading and damaging. It was pushed by a highly influential team of British psychiatrists. Many countries still prescribe exercise as the official treatment which is horrific, especially when MAID is given as an alternative. I’m understand of skepticism.

My position is that of a subset of the patient community that represent motivated amateurs rather than any sort of official expertise. My background in ML and stats did help in my research and my ability to solely focus on this one condition and rapidly iterate small N unofficial trials over many years led to findings that I contend exceed that of most experts. For example we knew the BC007 trials were going to fail years in advance of when they actually did.

[ChrisMarshallNY]

Didn't they do the same with Lyme Disease?

Lotta folks died, because of that.

[cjbgkagh]

Yeah, psychologizing was in vogue. Has the added benefit of obviating the government of responsibility - a form of victim blaming. It used to be hoped that the cost of care would motivate the government to look for treatments they now are instead pushing MAID as an option.

Medical history is a horror show. It's weird that we have absolutely fantastic sources of information and tooling with abundant genome sequences and computers to process them and still medicine is very much prestige driven where dominant experts can hold back competing research for generations. I think patients will increasingly do an end run around them with more patient community sharing.

I do think ozempic will turn out to be a wonder drug not just for weight but also for auto-immune. And then consider - how much of mental illnesses is actually an expression of an auto-immune disorder. I think we're going to find out, and I expect we will look back on how badly people with mental illnesses were treated like we now look back on those who were lobotomized.