Update October 16, 2019: as explained below, I received more accurate numbers from NIH and have updated this post to reflect that. For ease of reading, I changed numbers throughout this post as warranted without striking through every previous number. I have also updated the graph, and my original post about 2018 funding.
For the second year in a row, NIH has significantly overstated its investment. For 2018, NIH claims it spent 9% (almost $1.3 million) more than it actually spent. NIH also claims that funding fell by 4.5%, when the truth is that our funding fell by almost twice as much. In a disease like ME/CFS, this has serious consequences because the funding number is at the center of so much policy debate and advocacy efforts.
How Much Was Spent in 2018?
On the Categorical Spending Chart, NIH states that it spent $14 million on ME/CFS in 2018. The chart links to the list of projects and grants included in that number. Here is how it breaks down:
- Extramural grants: $4,663,553
- Collaborative Research Centers: $6,959,487
- Intramural projects: $2,417,815
This comes to a total of $14,040,855, which NIH rounds down to $14 million. But there’s a problem, and it’s the same problem I found in 2017. The intramural number is not limited to money spent on ME/CFS.
The Intramural Problem
NIH lists three intramural projects in 2018:
- Dr. Avindra Nath’s Clinical Care Center study: $750,000
- Dr. Leorey Saligan, “Investigating Correlates and Therapeutics of Fatigue”: $172,552
- Dr. David Goldstein, “Biomarkers of Catecholaminergic Neurodegeneration”: $1,495,263
*record scratch* $1.5 million to Dr. Goldstein for biomarkers? For real?
Actually no, that number is not for real, at least not as far as ME/CFS is concerned. Dr. Goldstein’s project page lists a number of different projects, most of which are related to Parkinson’s Disease. The connection to ME/CFS is the fifth item listed under Collaborations:
e) Clinical catecholamine neurochemistry in chronic fatigue syndrome: We are collaborating in an intramural study of chronic fatigue syndrome (NIH Clinical Protocol 16-N-0058, Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, PI Avindra Nath) by conducting screening autonomic function testing and provocative tilt table testing and assaying plasma and cerebrospinal fluid levels of catechols.
No specific amount of funding is listed for any of the subprojects on Dr. Goldstein’s intramural study. I ran into the same problem last year. In 2017, NIH included the full cost of the Human Energy and Body Weight Regulation Core in its ME/CFS spending, despite the fact that the funding was actually spent on twenty-six different clinical protocols. When I asked NIH how much of the funding could fairly be allocated to Dr. Nath’s study, the NIDDK Office of Communication said there was no such breakdown available. I had to guesstimate how much funding to include in 2017, and originally, I had to do the same for 2018 as well.
I divided the Goldstein funding among all the listed subprojects and collaborations, and arrived at a 2.5% share to the ME/CFS study. Is that fair or correct? No idea!!! The lack of precision in NIH’s accounting (at least publicly) means we have to guess. One thing I do know for sure: NIH should not claim the entire $1.5 million from Goldstein’s work in the ME/CFS category. It artificially inflates the funding number by a significant amount.
In June 2019, I asked NIH for the actual amount that Dr. Goldstein spent on his ME/CFS project. In September 2019, Dr. Vicky Whittemore informed me that Dr. Goldstein’s laboratory:
spends about 15% of his resources on ME/CFS research, including their testing equipment in the Patient Observation Room, Research Nurse, Clinical Research Nurse Practitioner, catechol assay personnel and systems, reagents and disposables, computer software and hardware, and his time and effort. This is all factored into the overall budget his lab receives and his lab does not receive specific funds that are designated to be spent on ME/CFS research. The budgets for the intramural labs are provided to the lab overall and they don’t allocate or budget for specific research projects – they just do the research.
Accordingly, I applied 15% of Dr. Goldstein’s budget ($224,289) to the ME/CFS total. Back in October, I calculated that NIH spent $11,623,040 in 2018. With the addition of the Nath, Saligan, and Goldstein intramural funding, I now calculate that NIH actually spent $12,769,881 in 2018.*
How Big Is The Difference?
NIH’s failure to accurately report the intramural funding number results in a significant overstatement of the ME/CFS investment for both 2017 and 2018.
|NIH Calculation||My Calculation||NIH Overestimate|
|FY 2017||$14,725,728||$13,967,704||5% more than spent|
|FY 2018||$14,040,855||$12,769,881||9% more than spent|
In case the table is unclear, NIH overestimated its ME/CFS spending in 2018 by 9%, or almost $1.3 million. The overestimate is due to NIH’s failure to assign the correct amount of intramural funding to the ME/CFS total.
The inflation of the funding number also affects the calculation of changes in funding from year to year. Using NIH’s numbers, funding decreased by 4.6% from 2017 to 2018. But using the actual amount spent on ME/CFS, funding decreased by 8.5% in 2018. Here’s a graph of NIH’s calculation compared to mine for 2016 through 2018:
When NIH reports inaccurate numbers on its Categorical Spending Chart, those numbers are relied upon by Congress, journalists and advocates, even though the numbers are actually wrong.
The September 2019 Report of the NANDS Council Working Group For ME/CFS Research is a prime example. That report uses NIH’s inflated funding numbers in multiple places, including Figure 1 on page 7. Because this is an official report, the inaccurate numbers will be enshrined in all subsequent discussions. In a research area like ME/CFS, where the annual investment is so incredibly low, relying a number that is off by more than $1 million is a big deal. That $1.3 million is almost enough to fund another Research Center for a year. It makes it look like NIH is doing substantially more than it actually is.
Reporting that funding declined by 4.5%–when it is actually 8.5%–is significant. It obscures the truth and minimizes the very serious funding problem in ME/CFS research. Counting money towards ME/CFS that was not actually spent that way, even if it is due to a sloppy accounting policy and not malfeasance, is misleading. This is true for every research category, but the effect is much stronger for diseases like ME/CFS that are already subsisting on tiny crumbs from the NIH budget.
This is yet another way that the burden of accuracy and attention to detail is shifted to our disease community that is already carrying so much. Why did I have to invest hours of my time over several weeks to ferret out the correct number and pass that information on to you? Why should I have to make my self sicker and do NIH’s accounting job?
Because it has to be done. We need the accurate numbers, and we need to use them everywhere. Use them in talking to Congress, in asking questions of NIH, in participating in discussions like the NANDS Working Group, in speaking publicly about the ME public health crisis, and in writing about it.
I believe my work has shown–over many years–that regardless of the intentions of individuals at NIH and other agencies, we cannot assume that the agencies will do the right thing and report the right thing to us. We have to do this fact-finding work in order to hold them accountable.
If our goal is to secure more research funding in order to identify treatments for patients, then use the correct information. NIH spent $12.8 million on ME/CFS in 2018, not the $14 million that they claim. Funding was down 8.5% in 2018, and we slide backwards down the funding ramp that Dr. Francis Collins had promised us.
Use the correct information. Require NIH to use the correct information, too. And trumpet the truth: ME/CFS funding at NIH fell by 8.5% in 2018.
*I’ve corrected that earlier post with these new numbers.