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 want to make clear that I agree with what you are saying here and it wasn’t what I was most concerned about, I’m a scientist myself, in cancer research at NIH until not long ago, and was able to work much more before ME starting slowly robbing me of that ability over these last years.
My complaint is that no one should say that they really think we will see some answers in X years, or any prediction, at this stage. Not even the best scientists on Earth would try and make any such prediction with how little we know right now about ME.
Science takes an extremely long time, and is a winding road full of dead ends and only some promising directions, almost always requiring many very well funded labs building on the evidence base by providing independent evidence further confirming previous hypotheses or refuting them. Then through creative destruction, dead end paths are slowly removed and promising paths strengthened until we get to some real progress.
So unless we are incredibly lucky, with a lucky breakthough, which might happen with Long COVID, we won’t see anything major that could help us for a time on the order of decades. I think a lot of ppl in the ME community and on forums confuse lots of great brainstorming ideas and very, very early hypothesis tests as significant progress.
So from my experience, typically when you are at this stage in understanding, and level of scientific output, answers are decades off. We can be hopeful but must tell people the realistic facts that things are way more likely than not a long way off. It’s been that way historically with other diseases that appear to be as complex and invisible-looking as ME, even way better funded with bigger research communities.
If the biological basis of ME is rooted in the lower brain and brainstem, where the initial trigger and subsequent chronic immune activation caused some kind of dysfunction in the autonomic nervous system (local autoantibodies against receptors or neurotransmitters, inflammation, brain cell dysfunction, etc), which can explain all the symptoms of this illness, it will be hard to show this only looking at humans.
If the biological basis is cellular metabolic dysfunction caused by some kind of immune dysfunction and both exist outside of the brain, which can also explain ME symptoms, I think we might have more chance to find some answers without needing a Hail Mary
But if it’s fundamentally rooted in the brain, which I would put my betting money on now, then without an ME animal model it will become really hard to show this. I hope that some groups at least in Long COVID are trying to develop a PVFS animal model, because that would be an incredible step.
EDIT: if the patient community or others ask about timelines that the scientific community is totally honest with them about how long a way off actionable understanding of this illness really is. I’m not saying that scientists should be telling patients this unsolicited, but if asked don’t be unrealistic