NIH Funding for ME in 2019: The Details

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! (Note that I updated this post on October 28, 2020 with corrected numbers.)

2019 Actual Numbers

Based on currently available numbers, NIH spent $12,008,817 on investigator-initiated grants and the Collaborative Research Centers in FY2019. More than 60% of that funding went to the Centers. I address the problem with intramural funding in more detail in this postUnfortunately, NIH won’t release its numbers for intramural funding until next spring (and those numbers are not always accurate). I will update this post when those numbers are released, but for now we have to rely on the information that is publicly available.

Here is how 2019 compared to 2018. (You can read the details of 2018 here).**

FY 2018 FY 2019 % Change
Extramural $ $4,663,553 $4,627,302 < -1%
Intramural $  $1,146,841 $1,088,791 -5%
Research Centers $6,959,487 $7,381,515 +6%
Total $12,769,881 $13,097,608  +3%

A 6% decrease in the bottom line total doesn’t sound too bad. The 3% increase in the bottom line is due entirely to the increase in Research Center funding. It’s not until you look at the trend over time, particularly in each category of spending, that you see the dangerous drop in investigator-initiated (extramural) funding since 2017. More on that below.

Of the twelve extramural grants in 2019, seven continued from last year: Davis, Friedberg, Light, Unutmaz, Williams, Nacul, and Rayhan. There were five new grants: Abdullah, Daugherty, Li, Natelson, and Younger, but only Younger’s was a five year grant.

The Research Centers are the same from last year: Columbia, Cornell, and Jackson Labs. Data Management Center: RTI. One note about Columbia’s Center: NIH gave the Center an administrative supplement award. However, Dr. Joe Breen of NIAID clarified that this award funded research on a different disease using methods from the ME work. I have excluded the supplement funding from my calculations.

Once again, NIAID and NINDS provided the vast majority of funding (78%) across all categories. Eight additional Institutes contributed the remaining 22%, almost all of which went to the Research Centers. NIAID split its funding almost evenly between grants and Centers, with 52% going to investigator-initiated grants. NINDS spent 65% of its funding on the Research Centers, and the remainder on investigator-initiated grants.

Three grants are now in their last year of funding (Friedberg, Unutmaz, and Williams). These are all large five-year grants, totaling more than $1.5 million in FY2019 alone. If these grants are not renewed or replaced, investigator-initiated funding will drop by 34% next year.

Which institutions and investigators are getting the most money? These seven investigators received 82.5% of the total FY2019 funding:

  • Jackson Labs/Dr. Unutmaz: $2,770,725
  • Columbia/Dr. Lipkin: $2,241,807
  • Cornell/Dr. Hanson: $1,849,848
  • RTI: $1,176,919
  • Stanford/Dr. Davis: $762,949
  • Ohio State/Dr. Williams: $568,411
  • London School of Hygiene & Tropical Medicine: $539,019

Further Observations

As discussed above, the overall funding increased 3% from FY 2018 declined 6% from FY 2018. However, if we look back to 2017, it’s obvious that we are well below the high watermark of NIH funding to date.

Since 2017, our total funding has declined by 6% 14%, while investigator-initiated funding declined 25%. I first raised a concern about the drop in investigator-initiated funding in 2017. I am now so alarmed by the implications of this that I wrote an entire post about it.

Total Funding Extramural
FY 2017 $13,967,704 $6,128,925
FY 2019 $13,097,608 $4,627,302
% Change  -6%  -25%

What can reverse the trend? NIH must issue more Requests for Applications with set aside funding. I suspect that there are a number of investigators who would submit applications if they knew some were guaranteed to get funding.

My expectation is that NIH funding should grow substantially every single year. That is not happening, but it could. The only thing preventing NIH from setting aside funding for RFAs is NIH itself.

Meanwhile, time passes.

At the NIH ME/CFS Advocacy Call on October 17, 2019, Dr. Whittemore said the Trans-NIH ME/CFS Working Group was working on a strategic plan, with the NANDS report as a starting point. No timeline was provided.

**Note that NIH calculates the aggregate number differently than I do, because I do my best to exclude amounts that were not actually spent on ME/CFS research, as in my 2018 Fact Check post.

My thanks to Dr. Joe Breen at NIAID for providing me additional clarifying information.

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12 Responses to NIH Funding for ME in 2019: The Details

  1. Cort says:

    Wow. Superbly done. Thank you!

    What disappointing news, though, to see investigator initiated funding has actually declined so significantly. Not only have the research centers failed to boost individual researcher applications but they’ve actually dropped significantly. That’s just a shocker. It demonstrates how much work the NIH needs to do to get investigators interested in this field and applying for grant.

  2. jimells says:

    Way to go, NIH! When it comes to bureaucratic can-kicking, NIH is Number One. They might be Number One in planning, report-writing, conference-organizing, and butt-covering as well.

    Too bad they suddenly forget how to organize effective research programs when they hear the phrase “myalgic encephalomyelitis”.

  3. Roy S says:

    Thanks again for all your efforts, Jennie. This really helps our community.

    There is obviously still ill will towards the ill with ME at the NIH.

  4. Wigglethemouse says:

    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?

    • Jennie Spotila says:

      If we remove intramural funding from 2018, then 2018 totals $11,623,040 compared to 2019 $12,008,817. That’s an increase of 3%.

      If we remove intramural funding from 2017 as well, then we get:
      2017 – $13,354,192
      2018 – $11,623,040
      2019 – $12,008,817

      That’s a decrease of 10% from 2017 to 2019. It also shows the larger amount of intramural funding in 2018 ($1,146,841). I wrote about the difficulty of discerning how much intramural funding was actually spent on ME research in this post:

  5. Wigglethemouse says:

    Do you know when the last review panel was? I found this link on your Feb blog post and the last meeting seems to be in March. That’s awful if that is right?
    which led me to

    • Jennie Spotila says:

      I’m going to look into this further. There are usually three meetings per year.

      • Wigglethemouse says:

        Thank you.

        It would be very interesting to see the makeup of the panels again. Is reviewer relevant experience same, worse, better?

        I wish we could see more details of the applications they are getting…. I guess that won’t happen.

        I really appreciate all the effort you put in. Thank you again.

  6. Wigglethemouse says:

    Thank you.

    It would be very interesting to see the makeup of the panels again. Is reviewer relevant experience same, worse, better?

    I wish we could see more details of the applications they are getting…. I guess that won’t happen.

    I really appreciate all the effort you put in. Thank you again.

    • Jennie Spotila says:

      The Special Emphasis Panel met in July, and will meet again in December. I am trying to get the rosters from NIH.

      We cannot see any details about the applications reviewed at the SEP meetings, with the exception of the number of applications and the titles of applications that were ultimately funded. That’s it, I’m afraid.

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