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Good Science ME/CFS Grants Being Turned Down by NIH

Superman’s and other good ME/CFS scientists’ brilliant grants are currently being turned down by @NIH. Part of the reason is that the system for grant review is a clusterfuck. Grants are reviewed by study sections, whose reviewers give them a score. They then go to Council, who funds the ones with the best scores. The main problems are 1) There is only money for about 10% to get funded. 2) Reviewers nit-pick the grants so only a few get good scores, when in fact, a much bigger percentage of the grants are good 3) Reviewers are often underqualfied and uninformed about the subject of the grant so their criticisms are bogus. 4) Council takes these bogus reviews as gospel and just funds the top few, without any evaluation of the competence of the reviews or consideration about the importance/urgency of the science. 5) The leadership at NIH is obviously not committed to addressing the urgent problem of millions of people suffering from the horrific disease of ME/CFS.

What is required is that scientists focus on researching things that can actually make a difference and lead to treatments or a cure for this disease. Grant reviewers are looking for a hypothesis that can be researched and lead to an answer that can be published. Ron isn’t thinking about getting published; he’s trying to find answers to what’s happening inside the bodies of ME/CFS patients and discover an intervention that might help. What he wants to do isn’t always so simple as "hypothesis, research, publication" and the grant reviewers only like grants that use existing, well-established methods that will lead to a publication. They can’t imagine that anything they have never seen before could actually work. All of Superman’s grants involve things they have never seen before. They don’t understand it, which when combined with what a mess ME/CFS is, makes it even harder for them. A lot of them also probably know nothing about ME/CFS or are prejudiced against it to begin with.

Another thing that gets in our way is actually probably a good thing most of the time. NIH has a rule that they are not allowed to communicate with the grant reviewers. I believe it’s to try to keep things impartial. However, this rule hinders NIH from intervening and urging acceptance of Ron’s grants and other good ME/CFS grants to try to make it impartial as it should be. I don’t believe NIH is allowed to pick who reviews which grants either. However, the Council’s JOB is to make certain the reviews are competent and unbiased, and that the research addresses urgent and nationally important topics. In the case of ME/CFS, their job should be to make sure ME/CFS has adequate funding and to make certain the research is likely to make progress towards understanding the disease in a way that might lead to treatment and cure. Not just a bunch of random data to publish.

This is all true, but to blame this as the cause of the problem presumes that the various heads of NIH actually want these grants approved in the first place.

What is also true is that NIH is engaged in a duplicitous publicity stunt trying to continue their 40 year campaign of intentionally ignoring ME/CFS and systematically denying grants simply because they relate to ME/CFS while at the same time trying to cultivate a public image of supporting ME/CFS. NIH has recently been saying things like "we want to and are ready to fund ME/CFS grants ‘based on good science’ so turn in grants and we’ll fund them". Sounds good right?

But when good science grants about ME/CFS are submitted to NIH these doo-hinkus whos-awhatsit scientists review them and find absurd reasons to give them bad scores so they then get dismissed as "bad science".

I’ve got news for you Francis Collins (the Director of NIH). Ronald W Davis doesn’t write/speak/think/feel or even shit "bad science". We see the game you’re playing, and we think you are even more depraved a human being for playing it. Either do the right thing and fund worthwhile ME/CFS grants or publicly face the blatant prejudice you are enacting.

We know your system is difficult, but we also know that you are the Director and you are capable of intervening when there is a severe health crisis so that it gets addressed. It’s been done before. You just have to believe that we have a real disease, that we are suffering, that more people will suffer, and that science needs significant funding to end the disease and end the suffering. And you have to care. You told us "We are the National Institutes of Hope", "We are a family, in this together." and "We are ready to fund good grants". You need to put your money where your mouth is. You know what a good grant looks like.

This isn’t something you’re going to get away with. We all see what you are doing, will remember it, and history will record it.

Until Francis Collins finds his humanity, the Open Medicine Foundation funding Ron’s research is entirely privately sourced. https://www.omf.ngo

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