Fiscal year 2018 is almost over, and I have calculated how much NIH is likely to spend on ME research this year. The short answer? Based on current numbers, I project a 17.6% decrease in NIH spending on ME/CFS research in FY 2018.
*record scratch*
For real, yo.
First, we have the grants continuing from last year:
- Dr. Fred Friedberg has received $358,594 for his study on activity patterns and autonomic dysfunction.
- Dr. Ben Katz has received $617,337 for the last year of his prospective study on CFS after mononucleosis.
- Dr. Alan Light has received $329,085 for his study of novel gene variants in ME/CFS and fibromyalgia.
- Dr. Derya Unutmaz received $676,527 for his study of immunological perturbations in ME/CFS.
- Dr. Marshall Williams received $568,411 for the study of stress effects on viral proteins.
- Dr. Jarred Younger received $423,527 for his daily immune monitoring in ME/CFS.
NIH has made two new grants so far in FY 2018. That’s right. Just two new grants:
- Dr. Ron Davis received $775,509 for his molecular and single cell immunology study.
- Dr. Steven Schutzer received $337,987 to test whether spinal fluid proteomics can distinguish ME/CFS patients from fibromyalgia patients.
There are two additional grants that are due to receive funding in August: Dr. Luis Nacul’s longitudinal study ($539,153) and MD/PhD candidate Rakib Rayhan’s study on neural correlates of fatigue ($35,844). Finally, there will also be intramural research, including Dr. Nath’s Clinical Care Center study. There is no way to predict how much that will be, but let’s assume $614,000 to match the 2017 funding.
With these grants combined, NIH will invest $5,275,984 in ME/CFS investigator-initiated and intramural research in 2018, a decrease of more than 21%.
What about the Centers? That funding will probably come through in September. The original projection from Dr. Vicky Whittemore stated that funding would be lower after the first of the five years because the Office of the Director’s $1 million contribution was for one year only. If that is the case, then NIH will spend $6,225,267 on the Centers in 2018, a decrease of almost 14%.
In my analysis of 2017 funding, I pointed out that without the Centers, NIH funding of ME research would have dropped by 15% in 2017. As projects ended, and new projects were not funded to replace them, I predicted that grants would continue to go down. Last year, I said:
[N]ew 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.
And it has come to pass: the hit in 2018 will be even larger. The two new grants to Dr. Davis and Dr. Schutzer comprise 21% of the total grants/intramural funding, but too many other grants reached the end of funding in 2018. And this year, the Centers do not hide the decrease in funding since the Centers themselves had a planned decrease after the first year.
I also warned about the opportunity costs of the Centers last year. Seven groups invested a great deal of time in Center applications but did not get funded. If they do not successfully turn those into individual grant applications, then that effort was for naught.
In May, Cort Johnson reported that only a dozen applications have been submitted to NIH in 2017/2018. This is just as appalling as a drop in NIH funding. We need heroic efforts on all sides. We need NIH to be invest more money, but we also need our researchers to do heavy lifting and get those grants submitted. I know first hand how time consuming writing grant applications can be, and I understand that researchers are reluctant to invest the time if they think funding is unlikely. But we are at the point where submitting more grants is critical, regardless of the predicted likelihood of success.
NIH is currently projecting an increase in spending to $16 million in 2018. Given the numbers so far, how could that happen? Perhaps the Centers will receive more money, or Dr. Nath will spend more on his study. Yet given the approach detailed in Dr. Walter Koroshetz’s letter to MEAction, this does not seem likely.
My projection looks like this:
| FY 2017 | FY 2018 | % Change | |
|---|---|---|---|
| Grants/Intramural | $6,742,437 | $5,275,984 | -21.7% |
| Research Centers | $7,225,267 | $6,225,267 | -13.8% |
| Total | $13,967,704 | $11,501,251 | -17.6% |
I hope I am wrong about this. I would like to be wrong about this. But unless NIH makes some dramatic decisions between now and the end of September–decisions that increase funding by millions this year–there is no way NIH can claim it is moving in the right direction.
Thanks for doing the work to get this all noted down, Jennie.
It’s important to track this.
Grateful to you for this post.
Tick tock, tick tock: The days, weeks, months, years, decades just keep going by. I spend decade after decade desperately sick. So much time unable to leave my bed, feeling like death warmed over. And I know so many others who are in the same state. Or worse. And yet our government doesn’t care enough to change this.
Superb analysis Jennie! This is so true.
[N]ew 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.
Without a huge uptick in individual research grant applications this field will never thrive. No field can rely on it’s research centers – for one thing they don’t present a diverse enough pool of researchers – we need researchers from outside and inside this field to be pushing all manner of applications in.
For another Research Center funding is only stable for a short period of time. When funding stopped for last NIH ME/CFS research centers around 2000 the field suffered terribly because of this same problem – we do not have a good pool of researchers steadily pumping in grant applications.
It looks like October is going to be very important for us. Oct will be a year since the NIH Research Center awardees were announced. If those 6 or 7 research groups which didn’t win out can’t find a way to get new grant applications by then I don’t what to think.
I’m sorry, but I just do not expect to see researchers expend their valuable time trying to get grants in a difficult and underfunded field without some real money being offered, presumably through RFA’s. Without significantly more money being offered by the NIH, the researchers could be expected to look at the probability of a receiving a grant for their efforts and correctly conclude that the probability was very low. And this would be even more pronounced in researchers new to ME whom we need very much to become interested in the disease.
The initiative MUST come from the NIH. But it won’t. (You have to wonder if Koroshetz ever sees an analysis like Jennie’s where the NIH funds are proven to go down, all the while he’s telling us how much more they are spending!)
When you report things like these, my heart drops. All the publicity and advocacy – followed by promises – for a negative result.
I guess I’m going to have to give in to negativity, and not expect anything to happen except by accident – during my lifetime. I guess I’m going to have to continue praying for miracles, because this level of support isn’t going to provide solutions.
Thank you for your continued hard work, and for having chosen to follow the money.
Jennie
Great work!
I know that you have a lot of time invested in this, Thanks a million!
A lot has changed in the last 20 years, then again not so much
Given the past history of ME proposals having difficulty competing with those of other fields, even if the review and selection procedure has been ameliorated, evidence of that takes time manifest. Regardless, the most effective way to encourage new research proposals is to allocate dedicated funding.
Also, the drop to $11.5M is frightening. NIH had stated $15M for FY17, apparently by including $1M that was not ME-specific nor sufficiently related to ME (per earlier blog). I believe they had projected $14M for FY18. That’s at least a $2M discrepancy, perhaps part of which is of the same origin as the $1M of FY17. But even counting that questionable $1M, I wonder where the other $1M went.
Correction to above comment. Recent categorical spending chart projected $16M for FY18, but only $14M for FY19.
We need to keep pushing to ramp up to fair funding of $200M/yr for ME. In the meantime, hope we can also seek significant philanthropy, corporate funding to also fund ME/CFS, and this type of funding also has more flexibility to move quicker, and much less overhead, restrictions vs NIH funding
We should think of NIH spending on ME/CFS in terms of the market share of the overall NIH budget. The FY 2017 operating plan budget of the NIH was 34,229.139 million dollars. The FY 2018 budget is 37,161.349 million dollars. So our market share of the NIH budget decreased by ~ 24% (from $40 per $100000 to $30 spending per $100000 of budget). Usually when an organization says something is a priority the market share of spending devoted to that priority goes up not down.
For comparison purposes in FY2002 the NIH claimed to spend 7.2 million dollars on CFS. That year the budget of the NIH was 23,188.233 million dollars. That translates to a market share of $31 dollars of spending per $100000 of NIH budget.
So in 16 years our market share has gone from $31 in 2002 to $40 in 2017 and back to $30 in 2018. Not exactly a stunning increase.
That seems like a bit easier than inflation adjustment.
The reality of this is shocking — but accept it as truth we must.
Thank you for doing this hard work and posting it. Can we get it to
NIH people or other advocates? What can we do with this valuable
information?
Are we like Sisyphus pushing the rock up the mountain only to
have it fall down again? I won’t give in to that because we have
researchers like Dr. Ron Davis and others on our side and
because more information is known and being relayed to us.
Thanks again. Without your analysis, we would not know this.
The data posted although worthwhile in showing funding allocated
for FY when projects are initiated, it doesn’t show how
much is spent that year. Projects may cross fiscal year boundaries so allocated
and spent are two different funding metrics.
Either way we still have the issue of how to encourage
budget increases and stimulate research submissions.
Maybe the NINDS wg will produce a research roadmap if they
haven’t already done so.