If ME/CFS research got £1 billion, what would stop it being wasted?

Since so many millions have already been spent on psychoquackery it isn’t bias, they have had their fill and biomedical needs to keep up.

 

Could an x-prize system be applied? Find a clinical biomarker, provide strong evidence that some mechanism causes some aspect of ME, find a reliable treatment. even if it doesn't lead to a valuable patent?

I think much of the problem is the lack of motivation to accomplish anything other than buffing their citations.

 

I’ve started just calling it Psycho. That being said, I still believe that we shouldn’t discriminate based on the subject, we should discriminate based on the quality of the proposed research project.

 

I fully agree. But they don’t know that, or they refuse to acknowledge it.

In principle, yes. But the HIV patients had to riot to get anyone to listen. They had plenty of proof. So I’m pessimistic.

 

Would someone keen to win an X Prize be likely to be sharp and intellectually honest?
For me the satisfaction of science was discovering that something works the way you thought it might. The amazing thing is that when it does, it does it better than you could have ever imagined it could.

The right motivation is largely a matter of personality, not money or gongs, I think. There are some very motivated people in the field now.

 

I imagine Landmark, Wyller, etc. believe that they have discovered how something works. Chasing «I know something» is a slippery slope that requires an ironclad integrity to navigate properly. And you need the wits to know when you don’t know something, as well as an extreme openness to the unknown unknowns.

 

Yes. Maybe I should have added to my last sentence:
The amazing thing is that when it does, it does it better than you could have ever imagined it could, but through specific mechanisms completely different from what you had initially expected.

 

I don’t think the goal would be that money motivates people to solve problems. As you’ve already said, that simply doesn’t attract the right kind of people with the right king of motivation and since the problem is sufficiently hard those are the people you’d want. I think the point is more so to spread a general kind of awareness for the existence of an intriguing problem that is worth working on and that is what prize-money could potentially do. The money then becomes irrelevant. Whether that actually works I am sceptical and it might even backfire. I would think there are more meaningful ways to accomplish some awareness for the existence of a problem worth working on.

 

Let s4me allocate it over time (say a period of 10-15 years).

I don't really have great hopes otherwise. LongCOVID has set things backwards rather than forwards.

 

I’m leaning more towards Sean here. Mostly because LC is becoming such a massive problem that it will be impossible to ignore at some point. The politicians are really trying their best to not take action, but LC has to be solved eventually. That will benefit ME/CFS, because you can’t solve LC without also solving ME/CFS (because Covid can cause ME/CFS).

 

Society has been ignoring growing disabilities (prevalence) of all types for years now, LC is not much different in that regard.

 

“Long COVID” with the symptoms of MECFS is MECFS, by definition.

MECFS is agnostic as to the trigger.

 

I agree, but the LC researchers are trying to solve all adverse effects of Covid-19, which means that they have to solve ME/CFS. I should have been clearer on that.

 

I was thinking about it as a filter against studies that are likely to be unproductive, but done just because they use the keywords that get funding. If the problem is that the people distributing the funding are terrible judges of what sort of research might be productive, then I'm not sure that they'd be any better at setting x-prize goals. Also, x-prizes are intended for groups who can raise investment by promising returns (cheap launch services, better storage batteries, etc), and ME research doesn't really fit that. The present system that rewards unproductive work is a failure.

 

That’s most of medical and BPS science.

 

Why is it worse? (I wasn’t here before COVID)

 

Because instead of learning from the past, old mistakes are being repeated and COVID/LongCOVID is soaking up much of the research funding and spending it on poorly designed studies.

 

And that is worse because…?

It just sounds like the same as before except now you have maybe 1 in 100 LC studies generating useful data.