2017 NIH Spending on ME/CFS Research

It is time to analyze how NIH spent its investment in ME research in 2017. NIH has not yet issued its own tally for 2017 through the categorical spending page, so I can’t say for sure how much money NIH will say it spent. Update, July 23, 2018: After NIH published its numbers, I reconciled it all again. I’ve updated this post to reflect my adjusted numbers. But it’s easy enough (although time and spoon consuming) to figure it out by examining the database entry for every relevant grant.

There are a lot of ways to crunch these numbers, so I hesitate to give you the oversimplified bullet point version. However, I know that many people don’t have the patience or capacity to wade through the details, so here is the bottom line:

  • In Fiscal Year 2017, NIH spent $13,946,881 $13,967,704 on ME research. This represents a 90% increase over FY2016.**
  • However, 52% of the spending total came from the new Collaborative Research Centers. Without the Centers, NIH actually spent LESS on ME research in FY2017, almost 15% less.
  • While those Centers are an essential step forward, the drop in funding through traditional grant mechanisms is a huge concern that we cannot ignore.

Let’s dive into the details.

Traditional Grant Mechanisms and Intramural Funding

The vast majority of NIH funding for all diseases is spent through traditional grant mechanisms, i.e. a scientist submits a grant and NIH funds it. Another major category is the money NIH spends on its own research by in-house investigators (intramural research). ME research was funded through both pathways in FY2017.

I had projected a little over $5 million for the year, and I’m glad I was wrong. These grants and intramural funding combined for a total of $6,721,614 $6,742,437 in FY2017. The good news is that Dr. Friedberg’s psychological study accounted for only 6.8% of that total. Orthostatic intolerance studies received 9%, and the remaining 84.2% went to neurological and immune studies.

The bad news is that $6.7 million is DOWN from last year by almost 15%. In addition, new grants accounted for only 5.4% of the spending. This is a really big problem. We need a large and steady pipeline of new projects to be funded apart from the Collaborative Research Centers. If NIH does not expand its non-Center portfolio, the field will suffer.

But Wait, There’s More!

The big development in FY 2017 was the announcement of the three Collaborative Research Centers and Data Management Center just before the end of the fiscal year. All the Centers have been funded for five years, and the totals below reflect only the funding for FY2017. Combined, NIH spent $7,225,267 on the four Centers in FY 2017.

ME/CFS Collaborative Research Center at Cornell University, directed by Dr. Maureen Hanson, received $1,868,837 distributed over three projects and three cores. Dr. Dikoma Shungu will measure levels of a number of biomarkers in the brain before and after CPET looking for evidence of oxidative stress and neuroinflammation ($380,380). Dr. Hanson will measure pre- and post-exercise blood samples for a broad array of metabolic and proteomic changes associated with post-exertional malaise ($308,729). Dr. Andrew Grimson will look for gene regulatory changes in white blood cells and extracellular vesicles in pre- and post-exercise blood samples ($341,457). Dr. Fabien Campagne will lead the Integrative Data Analysis Core for the Center ($43,846). Dr. Betsy Keller will oversee the Clinical Core, including recruitment and CPET testing of ME/CFS patients and controls at three locations ($262,123). Dr. Hanson will oversee the Administrative Core, responsible for coordinating the large team and multiple projects, as well as several advisory committees ($532,302). Patient advocates named to the project include Carol Head, Dr. Daniel Thiel, and Erica Verillo.

Center for Solutions for ME/CFS at Columbia University, directed by Dr. Ian Lipkin, received $1,969,576 distributed over three projects and two cores. Dr. Lipkin will lead the first project, which will use sequencing to survey viral, bacterial, and fungal infections in blood, oral, and fecal samples from ME/CFS patients and controls ($342,394). Dr. John Grealy will examine gene expression in blood samples, specifically looking for metabolomic and transcription changes associated with ME/CFS ($434,320). Dr. Anthony Komaroff will oversee the clinical project with three aims: establish a clinical network collecting survey and biological data, as well as longitudinal data through a new myME/CFS app; mine existing databases to identify clinical sub-types; and assess the utility of the in-office lean test ($566,192). The Administrative Core, also overseen by Dr. Lipkin, will coordinate all the work and advisory committees, as well as several digital initiatives aimed at recruiting new investigators and scientific interest ($626,670). Named collaborating patient organizations include Solve ME/CFS Initiative, #MEAction, and The Microbe Discovery Project.

The Jackson Lab ME/CFS Collaborative Research Center, led by Dr. Derya Unutmaz, received $2,1,25,950 for two projects and two cores. The unifying hypothesis of the center is that people with ME/CFS are infected with microbes (in the gut microbiome) that stimulate immune cells directly or indirectly through metabolic byproducts, and that the immune cells then respond incorrectly to that stimulation, producing disease. Dr. Julia Oh will lead the basic research project to identify the bacteria that causes immune system activity, as well as molecular mechanisms of that immune cell activation ($505,792). The clinical research project, led by Dr. Peter Robinson, will analyze a large amount of clinical data along with the molecular data in order to identify correlations that point to biomarkers and disease mechanisms ($651,220). The Clinical Core will be led by Dr. Suzanne Vernon and Dr. Cindy Bateman, and will recruit the patients and controls for the study, as well as collect and manage vast amounts of clinical data through an online tracking platform ($428,839). Dr. Unutmaz will lead the Administrative Core to coordinate the work of multiple investigators at multiple locations, as well as data sharing and community engagement ($517,849).

Finally, the Data Management and Coordinating Center will be led by Dr. Rick Williams of the Research Triangle Institute and Dr. Peter Rowe of Johns Hopkins ($1,260,904). Not only with the DMCC store and consolidate all the data from the Collaborative Research Centers, but it will also tap into SMCI’s patient registry. The DMCC will not be a static repository; it will support data mining and analyses.

Other Important Numbers

I would like to point out two other numbers we should pay attention to: indirect costs and NIH funding source.

Every grant from NIH is composed of two pieces: the direct costs and the indirect costs. Indirect costs are basically overhead, and go to the institution rather than the individual researcher’s lab. Indirect costs include the cost of operating the research space, administrative salaries, and the like. These costs are needed to do the research, but it’s more like infrastructure rather than the funding needed to conduct an experiment. The combined total amount spent on indirect costs in 2017 was $3,867,304, or 27.7% of our total funding. That money went to the universities and institutes where the research is being done, rather than directly to the researchers themselves.

I think we also need to keep track of which Institutes at NIH are investing in ME research, and with how much. A total of eleven Institutes contributed to the RFA Research Centers, although the lion’s share of the funding came from only four. In the case of the other grants (not including the intramural funding to Saligan and Nath), again only four Institutes contributed. Here is the combined totals for the top five sources:

  • National Institute of Allergy and Infectious Diseases – $5,870,859
  • National Institute of Neurological Disorders and Stroke – $3,372,416
  • Office of the Director – $1,503,729
  • National Heart, Lung, and Blood Institute – $500,000
  • National Institute of Nursing Research – $357,188

What I find fascinating about this is that NINDS is still considered the lead Institute given its role on the Trans-NIH Working Group and Dr. Whittemore’s prominent role in communications and administration. But it is NIAID that actually spends the most.

Overall Conclusions

The combined total of all NIH spending on ME research in 2017 was $13,946,881 $13,967,704, an increase of 107.2%. However, as shown in this table, if we remove the Centers from the total, NIH spent significantly LESS on ME research: almost 15% less than FY2016.

Adjusted Spending $ Increased (Decreased) % Increased (Decreased)
2008 $3,175,262
2009 $3,810,851 $635,589 20%
2010 $4,248,535 $437,684 11.5%
2011 $4,602,372 $353,837 8.3%
2012 $3,663,430 ($938,942) (20.4%)
2013 $5,561,597 $1,898,167 51.8%
2014 $5,924,018 $362,421 6.5%
2015 $6,822,398 $898,380 15.2%
2016 $7,885,030 $1,062,632 15.6%
2017 w/o centers $6,742,437 ($1,142,593) (14.5%)
2017 total $13,967,704 $6,082,674 77.1%

Why should we care? Because NIH is putting most of its eggs in the Centers basket. This makes the overall portfolio vulnerable in the event that the Centers close down in the future. Long-time advocates will remember when the last group of Centers of Excellence closed, making an enormous dent in NIH spending that took us years to recover from.

Putting so much of the money into the Centers is risky for another reason: lack of diversity. All four Centers are on the East Coast, and the research projects have substantial overlap. There are also no treatment studies in that basket. The Centers are an essential building block for our future, but they cannot be the whole foundation. NIH repeatedly says that the expectation is that these Centers will spin out additional applications for the traditional funding mechanism. But this is going to take time – a lot of time. We need a steady flow of investigator initiated grants, as well as additional RFAs to really open the pipeline.

Yes, doubling our money is great. NIH deserves praise for this, and the Centers are pursuing strong hypotheses. But the true metric of success is not how funding compares to the year before, but whether we have a diagnostic test and proven treatments. We don’t have that.

And no matter what NIH says, we won’t get it on $13 million per year.


**July 25, 2018: corrected mathematical errors

Additional resources: Read my analysis of NIH spending in 2017, 2016, 2015, 2014, 2013, 2012, and 2011.

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20 Responses to 2017 NIH Spending on ME/CFS Research

  1. Cort Johnson says:

    Great analysis! Great to have this in one place.

    Completely agree with your conclusions. How disappointing it is that the funding for investigator funded grants actually dropped. This is our Achilles heel. We MUST do better getting researchers to apply for grants. I agree that the idea that NIH research centers will spin out this grant applications isn’t a strong one. We should get grant applications coming in from the groups which didn’t get an NIH research center but otherwise it’s going to take quite a bit of time.

    Despite all the publicity we’ve received recently researchers are not stepping up to the plate. What we really need is an RFA or some mechanism that funds individual researchers.

    (One small quibble because Freidberg’s study as I understand it will assess the effects of activity has on autonomic nervous system activity I wouldn’t classify it as behavioral. It is not, however, a major study in any case. The NIH can do better…)

    • jimells says:

      Why should researchers waste their limited time and resources filling out forms that will end up in the circular file?

      NIH managers have plainly said on multiple occasions that their policy is to reject 88% of the applications.

      That is a policy designed to stop research, not encourage it.

  2. Cort Johnson says:

    Looking at that study it does have some behavioral elements but an important element is characterizing how excessive exercise whacksANS functioning

    “An important aspect of this new self-management protocol would be to identify early signals of impending relapse, particularly HRV status, via home-use portable devices that could be utilized by patients and their doctors as a warning to modify non- improvement activities, e.g., excessive activity or exercise, to prevent behavioral collapse into inactivity”

    • Jennie Spotila says:

      These are direct quotes from the project abstract:

      Hypothesis 1: Non-improvement will be significantly associated with these dimensional variables: (a) illness-exacerbating activity patterns (e.g., “push-crash”) reported on home web diaries; (b) daily hassles assessed in web diaries; and (c) negative life events reported in phone interviews.

      Hypothesis 2: Improvement will be significantly associated with: (a) illness-moderating activity patterns (e.g., healthy pacing) reported on home web diaries; (b) daily uplifts assessed in web diaries; and (c) positive life events assessed in phone interviews.

      Hypothesis 3: (a) the “push- crash” pattern will predict greater actigraphy variability and symptom variability; (b) the “limiting activity” pattern will be associated with very low actigraphy counts and high symptom severity; and (c) a healthier “pacing” pattern will be associated with moderate variability of actigraphy and symptoms.

      The long-range goal is to develop a new self-management protocol that more clearly identifies non-improvement activities and how they can be changed.

    • floydguy says:

      I disagree Fred Friedberg is psychologist and he clearly looks at the world from a “behavioral” perspective. Scientific research revolving around exercise and neurology should be done by those specialist researchers. Friedberg keeps getting large grants for doing behavioral studies with very, very little to show for it IMO. He should not be encouraged.

  3. 1) Give ALL the cash in grants to the people who have ME/CFS, so they can cope a bit better. We struggle with basics while they pay huge salaries to administrators.

    2) Wait (as we all seem to be doing anyway) for some genius type to figure out the cause, diagnosis, treatment, and cure.

    Do I sound cynical? Well, I AM cynical, having been around with this THING for almost three decades.

  4. Damn comment form prefilled with Cort Johnson’s info from healthrising. That was not my site’s URL. The one below is.

  5. Pat Radcliff says:

    Thanks again, Jennie for compiling and sharing this information for us.
    On my best day (even before CFS, I couldn’t do it). You are a treasure!!

  6. Annette Whittemore says:

    You hit the nail on the head, thank you! NIH continues to ignore the need for funded clinical studies that could provide patients with treatment options. We know of doctors who have successfully treated patients for years, often at the patient’s own expense, yet there is not one FDA approved drug treatment for ME. Can anyone really afford to wait another ten years before we have insurance supported treatments for this disease?

  7. Ashley Hinds says:

    Thank you for keeping tabs on this and informing us all, Jennie. Such valuable work, I hope it doesn’t impact on your health too much.

  8. bobbi ausubel says:

    What a wealth of info you have researched for us. Now I can understand what is happening with the dollars. Good work.

  9. Lee-Anne says:

    Great summary! It’s quite frustrating when patients think they are helping the cause by enrolling in some of these studies only to find later that they don’t exactly agree with the study method. You’ve raised valid points.

  10. Anonymous says:

    Why do I feel as though the RFA money (appreciated and yet insufficient) is like the toy one dangles in front of a baby to distract them….?
    “Pay attention here. See this shiny thing over here? Don’t fret about that (paltry and in some cases inappropriate research funding over there). Look at the shiny RFA money instead.”

  11. Cindy & David Shepler says:

    Jennie, I think you should be awarded an honorary PhD in analytical mathematics & research – seriously. This is a brilliant compilation of a tremendous amount of info, including the links and your past blogs. It’s extremely helpful to all of us because we can speak in factual terms. I cannot imagine the energy expenditure, but I am tremendously grateful for your work. A million thanks from both my husband and me!!

  12. Diane Lewis says:

    Jennie, Great Analysis! My curiosity is the ratio between the funding going to the “Indirect Funding” which you have identified as 27.7% vs the actual Funding per Patient amount.
    Infrastructure Funding % TOP 5 (only)
    $5,870,859.00 51% NIAID
    $3,372,416.00 29% NINDS
    $1,503,729.00 13% OoD
    $500,000.00 4% NHLBI
    $357,188.00 3% NINR
    $11,604,192.00 100% Indirect costs.

    If this is 27.8% of NIH’s Amount Budgeted to ME/CFS’s Research that appears to stay In-house at NIH are we still seeing Funding Per Patient at $6.00 per patient? Or, is the Funding Allocated Per patient part of the (-14.8%) decreased NIH Total Allocated Funds without consideration for perported Centers of Excellence? Would this mean we are only worthy of $5.85 now?

    It almost looks like NIH is double-dipping their Admin Expenses. First it funded in the Federal Budget, and then we are contributing an additional 27.7% from the ME/CFS Funds promised directly back to the same Administrative Agencies within the NIH?

    I hope I am not seeing this correctly? You’re Analysis is much better than what I can reason.

    • Jennie Spotila says:

      I’m afraid you are not seeing it correctly. You conflated the two separate issues in this section: “I would like to point out two other numbers we should pay attention to: indirect costs and NIH funding source.”

      I’ll try to explain a little more clearly.

      The Indirect Costs are reported by NIH for each grant. I calculated the total Indirect Costs of $3,867,304 through simply adding up the amounts reported as Indirect on each grant (including the Centers). Then I calculated the percentage of the overall funding it represents. In other words, of the $13,946,881 NIH invested in 2017, $3,867,304 or 27.7% of that money covered Indirect costs. And it’s important to note that Indirect Costs do not stay at NIH. If the research is being done at Columbia University, then Columbia University collects that indirect cost amount.

      The next paragraph dealing with the expenditures per Institute is a completely separate calculation. NIH reports the Institute sources of funding for each grant. Again, simple arithmetic to add up all the expenditures reported per source and list the top five Institutes in that paragraph. The numbers I reported (such as $5,870,859 for NIAID) are the full amounts – direct AND indirect costs – reported across all the grants per Institute.

      You raise an important question about funding per patient. I have always calculated this based on the total expenditure (direct + indirect costs), divided by 1,000,000 patients (other people sometimes use a larger prevalence number of 2 million or more. So for 2017, by my reckoning, NIH spent $13.95 per patient.

      • Diane Lewis says:

        Thank you for resolving that confusion on my part. I am impressed how you keep this all in perspective. I will continue to wait. Until, Diane

  13. kathy d. says:

    Thank you for your brilliant analysis. Are you sure you weren’t an actuary in your previous life?

    Your work is appreciated. I have to reread this when I’m not exhausted to really absorb the figures.

    Interesting that the actual NIH funding for researchers is down, while amounts for the “centers” is up. I hope they don’t collapse.

    But what happened with Ron Davis is infuriating. He submitted grant proposals and did the work (and is highly motivated to do so, given his very ill son), but NIH cut his grants after 27 years! It’s inexplicable.

    And did Jose Montoya get any funding? He’s doing a lot of ME/CFS research, too, as we know.

    So, NIH officials want to fund some people and not others. Wonder what is their criteria and why. It’s a mystery to me.

    Your work is so helpful. Hope you get some rest after this workload.

  14. billie moore says:

    Fine analysis, Jenny. We can all use at least some of it with our Congresspeople.

  15. Rivka says:

    A Herculean task to assess this funding information. And exceptionally helpful to us advocates. Yet also deeply discouraging. — Rivka

Comments are closed.