It is hard to understand why people struggle to understand how biased, and therefore how useless, an open label trial with subjective outcomes is. They seem to be being influenced by patients contacting them saying how wonderful, how life-changing these treatments have been.
I have some rambly thoughts on this. If SolveME is coming from the sort of circles I used to follow on social media, the whole world view is just so different.
View I've developed since reading papers and comments on S4ME:
- The hope, when investigating a group of people with a similar clinical picture, is that they have a shared underlying difference from the population (or only a small number of distinct differences).
- Almost by definition, these differences will be very narrow and specific. We are unlikely to hit on them by blindly fumbling around (or applying random treatments that we think are 'good' in some nebulous way).
- It is very easy to fool ourselves and waste a lot of time and money going down a dead end.
- As fraught as medical research is, people individually trying to solve their medical problems is even less likely to work.
World view that I saw almost everywhere else I've been (and somewhat internalized):
- ME/CFS-like illnesses are caused by overlapping constellations of problems that we can somehow describe the exact details of (e.g. mitochondrial dysfunction) and yet at the same time we have no solid studies of the problems, certainly no clinical tests for the problems, and we also don't know how to solve them completely (instead we have a very long list of things that 'help some people').
- Everyone has their own unique combinations/versions of these problems and that's why some people get better trying a long list of treatments and others don't.
- The search space is small enough (just the popular treatments you've heard about on social media) that it's plausible after trying enough of them you might hit on the right set for you. Plus, you can stack multiple treatments that each give 1/10 of your health back.
- It's normal for the effect of each treatment to be so small and slow to ramp up that you're never 100% sure if it's working or not, you've read many recovery stories like this.
- If a bunch of people say something made them better, there's a good chance it did. (Your whole reality has been shaken. You're dreadfully ill and you can't explain why and your doctor either has no idea what's going on or thinks you're just tired or depressed. The alternative health people are the only ones even living in the same reality as you, the one where you're sincerely sick. You'd really really like for them to be right about the other stuff they're saying too.)
I heard these views from everything I read or listened to (usually implicitly). Imo, this kind of "everything's true" belief system happens when there's there's no social incentive to test/falsify claims. Which is extremely common. I gather that S4ME's wisdom around this (i.e. our scepticism and desire to test if claims are actually true) has been hard earned after seeing the other kind of research go nowhere for decades. There seems to be a longer/deeper collective memory on here than elsewhere.
Idk how to solve this. The charities are under the wrong incentives. Probably we'd need to convince a big vocal chunk of the patient population first? Or convince funding sources?
