Founder of Health Rising and Phoenix Rising
The end of this is pretty heartbreaking....
Ron Davis and Raeka Aiyar rewrote parts of their center grant and submitted it yesterday to NIAID. It’s for an R01 grant (highest possible award is $499,000 per year for 5 years). If they get it, they won’t see any funds until at least next July. Meanwhile, Whitney is still lying there, as are millions of others suffering and losing significant parts of their lives.
I would just like to comment about the idea of NIH working with the 7 who didn’t get grants to help them improve them. I can only speak for Ron’s grant, but there is no way that that idea is even relevant to their grant. It was already a really good grant. And those reviewers added nothing that could improve it. The review was useless, biased, and wrong.
What they need to do is get good reviewers, take responsibility for the hole they have dug for ME/CFS, and make wise decisions as to how to move the field forward fast. Ron has done this himself for other fields when he sat on council. They would think about where the field needed to be. They would look at the reviews and discount the wrong, nitpicky stuff. They sometimes awarded grants to applications that were far down on the list because they were good proposals.
If someone there who knew about the field thought about the best way to move the field forward faster, they would have funded Ron and team. If they really wanted to get new, good researchers into the field, they would have funded Ron and his team. If they really want progress to be made, they would fund all 10 of the proposals. What they are doing now is just unconscionable.
The reviewers aren’t doing a good job, and no one is taking real responsibility for fast progress that aims at finding treatments fast. If people are upset that Ron didn’t get funded, I personally think that NIH should hear about it. I hate to think that they can do this and then get away with it and think the patient community is ok with this.
When Ron was on study sections or council, he always had the philosophy of scoring all the good grants high enough to be funded. Then if there wasn’t enough money only a portion of them would get funded, but no one would be saying they didn’t get good grants. Using those ridiculous scores (not just Ron’s) and saying there weren’t enough good grants is just wrong. It’s the effect of a messed up review system and no one taking responsibility to make sure the reviews are reasonable.
Ron’s reviews rated Stanford as “mediocre” as a supporting institution, which is nonsense, and had scientific comments that were just plain wrong (among other ridiculous things). No one’s grant should be judged in this way. The system needs fixing. Every scientist involved in ME/CFS research should be volunteering to be on study sections and review grants. And people should be careful not to collaborate with too many people because they then can’t be on a study section for those people’s grants. We don’t want all the good reviewers to have to recuse themselves.
This is a very very complex and difficult problem, but it seems to me that it all comes down to there being no one with power at NIH actually taking responsibility for the illness of over 2 million American citizens. That is their job. They are stuck in their bureaucracy.
I know it may seem like I’m just biased and advocating for my husband, but really, I’ve seen what he has done for 50 years, I know the amazing people he is getting on board to help, and I know that he should be getting whatever funds he needs. He does not think he can do this alone – on the contrary, he is assembling some of the best scientists in the world so that the very best people can be working on the things they do best applying it to ME/CFS.
If something doesn’t change, it’s going to take a long time. Ron is going to keep going as fast as he can, with the help of OMF raising funds and all the wonderful support of the patient community donating what they can. I just feel so sad. Ron went to Whitney’s favorite grove of Redwood trees today and cried.