The Halfway Point

We are halfway through fiscal year 2017. How much money has NIH spent on ME/CFS research so far this year, and where will we end up? The short version is: based on current spending, we are unlikely to hit the $15 million that people were hoping for. Hang on, because it’s a bit twisty turny.

To date, NIH has spent $2,861,839 on ME/CFS research in 2017.

That sounds terrible. But let’s dig into that number. So far, NIH has disbursed funding for the following eight grants:

• Dr. Fred Friedberg for ME/CFS: Activity Patterns and Autonomic Dysfunction
• Dr. Ben Katz for a Prospective Study of CFS Following Mononucelosis in College Students
• Dr. Jarred Younger for Daily Immune Monitoring in Chronic Fatigue Syndrome
• Dr. Marshall Williams for Stress Effects on Virus Protein Induced Inflammation and Sickness Behavior
• Dr. Armin Alaedini for Intestinal Immune Response in ME/CFS
• Dr. Marvin Medow for Reducing Orthostatic Intolerance With Oral Rehydration in Patients With ME/CFS
• Dr. Lubov Nathanson for Sex-specific Genomic Mechanisms of Transcriptional Regulation in ME/CFS/SEID
• Dr. Kathleen Light for Novel Gene Variants in ME/CFS and Fibromyalgia

However, there are six additional active grants that have not received money yet this year. I looked at the project start and end date, and when funding was issued in FY 2016. Based on that, I think these six grants are still due for money this year:

• Dr. Jim Baraniuk for Exertional Exhaustion in CFS
• Dr. Mary Ann Fletcher for Gender Differences in ME/CFS
• Dr. Maureen Hanson for Cellular Metabolism in Lymphocytes in ME/CFS
• Dr. Leonard Jason for Pediatric CFS in a Community-Based Sample
• Dr. Derya Unutmaz for Decoding Immunological Perturbations During CFS
• Dr. Eleanor Riley for Droplet Digital PCR for Evaluation of Associations Between Human Herpesvirus Infection and ME/CFS

If those grants get the same amount of money this year as they did in FY 2016, then we can expect a further $2,202,000, bringing the 2017 total to $5,063,839.

image credit: http://jessebharris.com/

This is a problem. Why? Because this would be a 33% decrease from NIH funding in 2016 ($7,637, 591). In fact, it would be the lowest funding number since 2012.

There’s another problem buried in these data. Last year, NIH funded five new projects. This year, only one new project has been funded. New grants would help salvage the funding total from the basement, but will there be new grants?

There are the RFAs to look forward to. The Collaborative Research Center and Data Management Center RFAs should total $6,750,000 this year. Competition is going to be fierce, and it is inevitable that some applying groups will be disappointed.

But there is a hidden opportunity cost here. I am co-PI for one of the applying groups, and I have watched the effort it takes to put an application together, up close. It is an extraordinary amount of work. I think it is unlikely that any group applying for an RFA grant has also submitted other grant proposals this year. What about after the RFA applications are submitted? I think most researchers will wait for their application reviews (projected to be done in August) before writing new applications, because the reviewer feedback can shape new applications.

In other words, while the RFAs offer dedicated funding, there may be a drop in new investigator-initiated grants outside the RFA mechanism. The groups that do not get funded under the RFA will not have new funding in 2017 because they were not able to submit those non-RFA applications.

If this plays out as I have projected, here are the total numbers:

We come out ahead. And the RFAs represent a long term strategy. It’s not just about that influx of $6.75 million this year. It’s about increasing collaboration and data sharing, and spinning off new grants. Hopefully, the $6.75 million to the Research and Data Centers will bring a greater return on investment than if that $6.75 million went into regular investigator-initiated grants.

There is one more speed bump looming on the road ahead: the federal budget. First, there is a (decreasing) chance that the government will shut down this Friday if Congress cannot pass a spending bill. That would bring everything to a screeching halt, including putting together the grant review panels for the RFA applications.

But beyond the shut down, NIH is facing the possibility of deep spending cuts. Nobody knows what is going to happen, and NIH is hedging its bets now. The RFAs include this qualifying language: “Future year amounts will depend on annual appropriations.” In RFAs issued over the last couple weeks, NIH has started saying:

Although the financial plans of NIMH and NINDS provide support for this program, awards pursuant to this funding opportunity are contingent upon the availability of funds. Funding beyond the first year will be contingent upon satisfactory progress during the preceding years and availability of funds.

It’s not over yet.

Note: I edited the first paragraph a couple hours after publishing in order to clarify where we can expect to end up by the end of the year.