Did you watch the 5 video updates I recently made? If you don’t watch them then you’re not gonna know what’s being followed up on are you? Ron actually really knows how to do science. He knows how to use the money the most efficiently and follow up on the most promising things. He is very accomplished and successful scientist and he knows what he’s doing. I think posts like this have a lot more to do with how frustrating it is to wait. Science is slow it goes back-and-forth. This is the process. And it takes money. A lot of it.I agree with the sentiment that even though there are smart people working on the problem, they never seem to really get anywhere to build on hypotheses. Like someone else said you can’t just do a couple discovery papers or initial hypothesis testing papers and then see some interesting biological signal and write up in the discussion “yada yada must follow up with more mechanistic experiments to confirm what we are seeing…” AND THEN BAM… THEY DON’T DO IT and nobody else really does either. Then they move to another idea and you are like, wait, things looked very promising but we never kept looking further at the previous idea? For once, let’s hammer out in a much more systematic way some damn hypotheses, and say ok follow up studies showing likely not worth it or yes let’s keep going.
So the way it’s being done currently you cannot reliably build on the evidence base to more strongly determine if a path is worth pursuing or likely a dead end. It seems like all the ME hypotheses are half baked unfinished works in the evidence base. The scientific community will never get anywhere this way, the scientific method depends on a building up of confirming or refuting experimental work, to slowly and more reliably weed out paths and strengthen interest and work (and grant money) in more promising ones.
Where is this happening in ME science? Sorry I’ve been out of touch for a while, but still seems like there’s so much that is left out to dry never finished or at least never more reliably confirmed that it’s probably not X or Y hypothesis. I cannot even watch Ron Davis or similar videos anymore, nothing to do with him or anyone they are likely wonderful people, but I used to watch everything and nothing ever goes anywhere before they move on to another idea without scratching the surface on the previous one, so you eventually get fed up and I’ve gotten a jaded, “boy who cried wolf” feeling now. So I’m just expecting for the patient community to yell from the hilltops when something really gets somewhere, because otherwise I see no movement and even when I don’t pay strong attention for a year or more and come back nothing’s changed.
I’m not expecting a cure, puzzle solved, or instant treatment, but what we should all put our feet down and expect is that the evidence base is constructively evolving the way it does in other disease research. There is no other way, it’s the only way in science to find some clearer direction. And this issue in ME research isn’t completely blamed on the lack of money, ME researchers are also choosing to do things in such a broken and erratic way.