2016 NIH Spending on ME/CFS Studies

Dollar-on-HookUpdate: This post was revised on March 12, 2018 to reflect the addition of intramural research to the total.

When I analyzed NIH’s spending on ME/CFS studies in Fiscal Year 2015, I concluded:

The bottom line is that NIH is going to have to do a lot more than say that they are serious about focusing on ME/CFS. NIH has to prove it. Now.

FY 2016 has come to a close, and so this is a good time to make an interim assessment. Has NIH proven that they will do more than talk about getting serious about ME? It depends on how high your expectations were.

NIH spent $7,885,030 on ME/CFS research in FY2016, an increase of 15% over 2015. This brings us up to 261st place out of 282 disease categories. But ME/CFS funding still lags far behind other diseases of similar significance, and very far away from where we need to be. For example, Lyme disease research received more than 3 times as much funding. Multiple sclerosis research received almost 13 times as much. Dystonia research received twice as much funding as ME/CFS, despite the fact that it affects only a quarter as many people in the United States. Interestingly, there is an NIH-funded Dystonia Coalition for research, something that ME/CFS is still waiting for.

Category Breakdown

What kinds of studies did NIH fund? And how much “new” money was spent?

Additional funding was awarded through the administrative supplement mechanism announced in April. Dr. Vicky Whittemore provided me with the specific figures for the awards made by the NIH. Drs. Katz, Campagne and Fletcher each received supplements as part of the awards discussed above ($182,267, $177,395 and $100,000 respectively). Dr. Nathanson received $99,086 to supplement his genomic study of biomarkers from last year. Dr. Luis Nacul received $233,158 to supplement his longitudinal study.* Finally, Dr. Mark Davis and Dr. Ian Lipkin each received supplements to very large grants not focused on ME/CFS. Dr. Davis will examine T cell receptor structure and function with $237,000, and Dr. Lipkin will screen samples against a protein library to identify viral exposures for $212,578.** These supplemental awards total more than $1.2 million dollars, or 16.3% of the total for 2016.

Trend Spotting

Looking at a year in isolation does not tell us much about how ME/CFS research is faring over time. Year to year comparisons, though, show whether research categories are trending in the right direction. I’ve added Dr. Friedberg’s two grants together under the psychological category for 2016.

2014 2015 2016
Total spending $5,924,018 $6,822,398 $7,885,030
Not ME/CFS Related 0 0 0
Psychological 9.4% 0 5.3%
Orthostatic intolerance 15% 13% 14.4%
Neuroendocrine Immune 75.6% 87% 80.3%

(To see the analysis going back to 2008, click here.)

Total spending has gone up, with neuroendocrine immune research receiving the lion’s share. However, the return of psychological research is disappointing.

In 2016, new awards came to $2,283,877, just under 30% of the total funding. This is the same as the percentage of new money in 2015.

Computing grant proposal success rate is a bit more challenging, since a FOIA request is necessary and the titles of unfunded grant proposals are withheld. Also, grants may be reviewed in one fiscal year but not awarded and counted until the following year. The last complete annual data I have is for FY2015. A total of 18 ME/CFS applications were reviewed that year, and three were eventually funded, a success rate of 16.6%. This lags behind the success rates for the Institutes that award the most funding to ME/CFS: NIAID had an overall success rate of 21.4% and NINDS had an overall success rate of 20.5%. I’ll be able to update the numbers for FY2016 after another FOIA request.

To me, it is the year to year comparison where the rubber meets the road. Is NIH spending more on ME/CFS research each year?

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%

The answer appears to be yes, at first glance. With the exception of 2012, ME/CFS research funding has increased each year since 2008.

For purposes of this chart, I exclude grants that are unrelated to ME/CFS. In the past, NIH has included unrelated grants in its own categorical spending analysis, but I examine each grant and strip out those that do not include ME/CFS patients or are otherwise unrelated. The dramatic 20% decrease in 2012 was partially attributable to the high percentage of XMRV and other spending that NIH was counting towards ME/CFS the previous year. It wasn’t until 2014 that NIH finally stopped including unrelated grants (although there is still the problem of Dr. Williams’ grant on sickness behavior in mice, but I’ve left that in).

So far, so good. Funding has increased each year, except for the outlier of 2012. But in 2016, we have a new problem.

The administrative supplements introduced this year were a welcome way to extend research funding by allowing investigators to do a bit more work on existing grants. In the case of Dr. Davis and Dr. Lipkin’s awards, the supplement added ME/CFS to what would otherwise have been non-ME/CFS work. Yet the supplements mask a potential problem, as well.  The 2016 supplements total $1,241,484 or 16.3% of the total. Look what happens when I remove the supplements from the funding total.

Adjusted Spending $ Increased (Decreased) % Increased (Decreased)
2015 $6,822,398 $898,380 15.2%
2016 $7,885,030 $1,062,632 15.6%
2016 w/o supplements $6,605,373 ($217,025) (2.8%)

Without those supplement awards, NIH spent less money in 2016 than in 2015.

What Does It Mean?

moneyFiscal year 2016 was the year of The Promise. In October 2015, at the beginning of the fiscal year, Dr. Francis Collins said, “Give us a chance to prove we’re serious, because we are.” In March 2016, Dr. Collins personally attended a telebriefing with the ME/CFS community and asked us to, “please take our commitment with great seriousness. Please also stay the course with us.”

We are still waiting for the expected Requests for Applications. It has been suggested that advocates be less “antagonistic,” even as at least one key member of the new Clinical Care Center study has demonstrable bias towards the psychogenic theory of ME/CFS. Dr. Collins recently gave fifty-five members of Congress an update, but it did not include the requested information about NIH funding plans beyond FY2016.

NIH, and Dr. Collins personally, created high expectations with The Promise. Many advocates clapped their hands and expected imminent change. NIH’s failure to meet these expectations is disappointing, to say the least. And old-timers like me can point to a string of previous promises and claims that went unfulfilled. Viewed through this lens, even a 12% increase in funding is not worthy of much celebration. The administrative supplements were not offered until April 2016, and without them we would have seen a 5.6% DECREASE in funding.

But it is also true that NIH is a big, lumbering bureaucracy. No cruise ship can turn on a dime. Those administrative supplements might be a band-aid approach, but there is no doubt we need the band-aid. The RFAs have now been scheduled, in theory, for launch in December 2016 (funding will not begin until September 2017). And Dr. Whittemore recently said at the IACFS/ME conference that she expects FY2017 funding to be substantially higher than 2016. It remains to be seen whether this is another promise that will create expectations that NIH won’t meet, or if Dr. Whittemore is signaling a sea change.

I believe there are some signs of positive change. If the administrative supplements were a creative way to ensure funding increased while the RFAs were hammered out, then so be it. But I stand by what I have said before: until there is actually money on the table, there’s no money on the table.

Promises are great, if they are fulfilled.


*Dr. Luis Nacul was funded by NIH to conduct a longitudinal study of people with ME/CFS or MS, and healthy controls. The study looked at immunological and virological markers. Funding began in 2013, but NIH did not include the study in its categorical spending. I have gone back and corrected my funding analyses for previous years to include for this study.

**Funding Institutes put caps on direct costs of between $100,000 and $150,000 in those supplements. This is why some of those supplements were above $200,000 – that includes both direct and indirect costs.

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

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7 Responses to 2016 NIH Spending on ME/CFS Studies

  1. Tom says:

    Thanks for your analysis.

    Small point: I don’t think the IACFS/ME conference support for early investigators should be counted as psychological. I know for example that Fane Mensah who is doing immunological work got one.

    • Jennie Spotila says:

      I struggled with how to categorize it, Tom. Would you suggest the neuroendocrine immune category instead?

  2. “expects FY2017 funding to be substantially higher than 2016” isn’t very helpful if the 2016 amount is piddling.

    Are they looking for genetic markers for people who contract polio? I may need to offer to eat my hat (straw) is this turns out to be genetic. I don’t believe something that started with an acute and raging infection could possibly suddenly appear on my gene-line. A personal peeve.

    Thanks for the info – Zero RFAs in 2016, maybe more in a later year?

    Sorry for being so negative. I’m getting so tired.

    Thank you for all your hard work – this can’t have been easy for you.

  3. Bazia says:

    Great info! Thank you!
    Is there an issue with canadites wanting to study ME/CFS?
    I can’t imagine that interest into a subject to study isnt somewhat if not substantially effected by what monetary support is available.

  4. billie moore says:

    My take-away from yesterday’s call with the NIH people is that we are NOT going to get big RFAs for general ME/cfs research. The NIH has decided that what we will get will be some collaborative centers, and that’s it. (And isn’t that wonderful? They are so proud of themselves.) Also, as usual, the NIH party line (repeated more than once by Dr. Koroshetz) is that it is up to the community to get the researchers to apply for grants. I am not an in-depth student of RFAs, but I suspect that this is not what they say to those in other disease communities. In summary, Collins “promise” is worthless, by our standards.

    I also sensed yesterday from the lumbering bureaucracy that they could be talking about studies having nothing to do with suffering and dying people. I agree with Bob Miller’s comments 100%. Approve Ampligen conditionally. More studies can be done while it is being made widely available. There is plenty of information in the hands of those researchers who have been administering Ampligen for 15+ years as to what the sub-sets of responders look like. Will that happen? No. I still think that most of these people in the NIH, CDC, and FDA do not really understand the disease and its horrific toll on people. They understand breast cancer, pancreatic cancer, MS, heart failure, etc. – what they are and how they can ruin lives. They do not have a real comprehension of ME, and so, no real sympathy or sense of urgency. Case in point – Joe Green, on the call yesterday from the NIH (did not get his title), repeatedly calling the disease “chronic fatigue.” And he actually attended the IACFS/ME conference, but learned little apparently.

  5. kathy d. says:

    Aaaugh! This is so frustrating.

    Studying behavior in mice was funded? But not the biological basis of ME/CFS in humans? Will wonders never cease!

    Thank you so much for your analysis and time and effort put into writing all of this. It’s appreciated.

    And I agree that until real money is allocated to study the physical causes of this disease, biomarkers and treatments, it’s all “empty promises” by the NIH, et al.

  6. Est says:

    I don’t know if I am the only one who feels this way, but I often wonder how important researching the effects of stress are on this disease at this point in the game really is? We know stress makes some of us (many?) worse, maybe it affected our likelihood of becoming ill, but how important is understanding stress specifically in us – right now? To me it doesn’t seem like it’s very worthy of being high on the priority list: could be wrong.

    Ok, beyond that, why does that matter [life stress, not acute activity/exertion stress]. I tend to feel stress is in the psychological category on its own. There’s valid reasons to look into psychological components of ME/CFS – but right now does not feel the time or place when it is delaying possible explanations and treatments. How the psychological effects of the illness have been studied has been disrespectful of everyone involved in this illness. I wouldn’t even say they have been legitimately studied as of yet really. It’s been more “well we just need to prove we were right all along.”

    Totally different topic but…

    I am one who has (ongoing) psychological illness diagnoses from before I was ill with ME/CFS. So when people opt to reject anyone with psychiatric illness from being diagnosed with ME/CFS on a clinical level I am often feeling pretty amiss by the dismissiveness. I see one of the primary researchers/specialists in the country who gave me my diagnosis, I feel fairly confident that she is right.

    Me and my doctors agree- my ME/CFS is fundamentally different from my depression and other disorders. The symptoms are severely different. I don’t know how anyone could confuse one for the other to be honest. I get that it may look the same to caretakers and doctors at times. I am on the more severe side in my ME/CFS though, perhaps the crossover is easier to see the less severe the illness?

    But even still when it comes down to what the diagnostic guidelines should be for research I do think psychiatric illness and certain other comorbidities should be excluded for that purpose. I just don’t appreciate the guidelines from research being applied without consideration for clinical/real world presentation. On that level I appreciated the IOM report and some other reports who made exceptions for clinical expertise in assigning the diagnosis to patients with psychiatric comorbidities.

    Sorry rambling!

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