I can imagine that his may well be the situation and I think the NIH may be right. I am not hearing of lots of projects not being funded by NIH that look worthy of big funding.
NIH is giving out funding. The money is available. Parity with other conditions means the same height of bar for research quality. There are serious issues about quality evaluation but it makes no sense to dish out money unless there is a reasonable chance of success.
This argument makes no sense to me from an ethical standpoint.
Its incumbent on someone to fund research in this Illness. Since it is not profitable for thr commercial sector , since we don't even have a clear idea of etiology and hence are very far away from drug trials, it makes sense for the government to lead , and throw money at exploratory research that is going to lead to a clear understanding of the disease.
I mean --who else is going to do it?
The ME research field has suffered from a scarcity mindset imo. Every researcher in their own silo with their own pet theory that they think prevents them from looking broader because they only have so much funding to spread around.
ME is a disease with lower quality of life than most diseases. If one only considers mortality rate, I guess it would be hard to see ME as a genuine public emergency like the AIDS crisis. Although patients do die from suicide (which may be taken as evidence that it deserves the "psych " label although suicide when faced with an incurable disease like this is clearly rational) at a higher rate than the general population , they dont tend to die directly of this illness. But if you go by quality of life and also amount of people affected , this illness would be seen as a public health emergency. I'm aware of NIHs rules for funding and that they generally don't make allocations for specific disease but I'm sure that agencies like NIH can make exceptions in the case of a public health crisis. Or at least appeal to congress for more help. So my question to you is--do you consider this an emergency/crisis or not? If it's not a crisis, i guess the "wait and see" approach is morally justifiable.
Sure, there are many low quality studies. And some of that may not be due to scarcity of funding but much of it may be. I mean, I'm not sure that science is exempt from laws of political economy.
And yes, we don't want to waste money by throwing infinite amounts of it blindly at a disease. But I'm not convinced by any ethical argument that ME funding could be a significant waste of taxpayer dollars or something. The US military and intelligence agencies have incredibly huge budgets and are largely unaccountable financially. I bring this up to make two points. A) so much more could be spent on any given disease without coming close to the waste in other sectors by government and B) While there is a grotesque amount of waste there and it goes largely toward furthering evil , in my opinion, the US military gets results. One can say there's waste, and it's basically unarguable. But I can't imagine the US being a world bully or cop or superpower while spending what they spend on ME on any of their projects. So maybe if we don't have scarcity in the field and just spend a lot, we can attract good scientists to it. As it is, the uncertainty re: the etiology is only one of the reasons the field is unattractive to scientists, I'm sure the funding has a lot to do with it.
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