Blog: Occupy ME, "NIH Funding for ME in 2019: The Details"

[Andy]

Every year, I take a careful look at the funding that NIH reports it spent on ME research. Normally, this is mostly a number crunching exercise, but this year I wrote an entire post about a serious problem I discovered when I examined the numbers. I thought it warranted its own post, and you can read that here.

There is still value in the detailed number crunching, though. One kind advocate said that she trusts my numbers more than she trusts NIH’s reporting (thank you!). Let’s dive in!

http://occupyme.net/2019/11/07/nih-funding-for-me-in-2019-the-details/

 

[Dolphin]

I don't think they should be quoted as saying there is a 6% decrease in overall funding. As one person said:

If you take out the intramural funding from calculating the total, as you don’t yet have a figure for 2019, isn’t there a slight increase in funding in 2019 compared to 2018?

 

[Wilhelmina Jenkins]

The intramural funding is always difficult to estimate. The real story here is that extramural mural funding is not growing. The RFA-funded Cooperative Research Centers were supposed to be a jumpstart for extramural research. The idea was that those researchers who applied to be funded for one of the Centers and were not chosen would resubmit portions of their applications for funding as individual grants. This didn’t happen, with the exception of Rom Davis. I have no idea why.

People have discussed that the problem is in the difficulty of obtaining funding, but proposals for ME/CFS research have, at this point, at least as good a chance of being funded as any other grant - maybe a bit more. In my opinion the reasons are historical and, to be fair, predate the current leadership of NIH. When the interest in this disease was high, NIH was doing a terrible job of addressing this disease.

Individual grants are the heart of NIH’s program. As Dr Koroshetz has stated, proposals come in and NIH funds them until the relevant pile of money runs out. The small number of individual grant proposals was a shock to the patient community as well as to NIH. It means that they have to try additional methods quickly or risk the collapse of the research community that has just begun to grow.

 

[Andy]

The 2019 NIH Funding Fact Check

NIH claims to have spent $15 million on ME/CFS research in 2019. However, my examination of the details shows that NIH actually spent $13 million, which means NIH is exaggerating its spending by 14%.
This gap between reality and NIH’s claim distorts the picture of ME/CFS research. While that may make NIH look better, in the long run it helps neither NIH nor the ME community.

Discussions about ME/CFS research funding must start with a solid foundation of facts. We must understand what research is being done, who is doing it, and what resources are being invested. I have been tracking and analyzing the details of the National Institutes of Health’s funding of ME/CFS research since 2012, and it is personally very important to me that I get the details right.

http://occupyme.net/2020/10/28/the-2019-nih-funding-fact-check/