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.
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.
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.