2015 NIH Spending on ME/CFS Studies

moneyUpdate: This post was revised on October 29, 2016 to correct mathematical errors and update the included research.

Since Dr. Collins’s announcement in October 2015 that NIH was renewing its focus on ME/CFS, I’ve been wondering when we would see that reflected in concrete, tangible action. In my opinion, the easiest thing to measure is the money. How much did NIH spend in 2015 on ME/CFS grants, and what did they spend it on?

The surprising news is that in fiscal year 2015, NIH spent $6,822,398 on ME/CFS grants, an increase of 15.2% over fiscal year 2014. But even this level of increase is too small to get us to our appropriate funding level any time soon.

ME/CFS is among the 52% of disease categories that saw an increase in spending. We even received more funding than hay fever for the first time since at least 2012. It’s not all good news, though. We were still 249th out of 265, compared to 231st of 244 categories last year. Fibromyalgia (whose funding fell) received 27% more than ME/CFS. Lyme disease research received almost 4 times more, multiple sclerosis received 14.5 times more, and burden of illness research received 12.5 times more than ME/CFS.

You can read my previous analyses of NIH ME/CFS spending in fiscal years 2011, 2012, 2013, and 2014. As always, understanding which grants were funded is the first step.

Category Breakdown

The full list of funded studies breaks down like this:

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 that the research categories are trending in the right direction.

2013 2014 2015
Total spending $5,638,797 $5,924,018 $6,822,398
Not CFS Related 1.4% 0 0
Psychological 9.5% 9.4% 0
Orthostatic intolerance 19.5% 15% 13%
Neuroendocrine Immune 69.6% 75.6% 87%

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

Not only has there been an increase in each of the last three years, but psychological research is gone (for now) and most of the money is being awarded to projects looking at neuroendocrine and immune issues. And if you look back as far as 2008, we had more funding in 2015 than any other year, without diversions to XMRV or grants unrelated to ME/CFS.

Every single funded grant was reviewed by the CFS Special Emphasis Panel, and six of the funded investigators have served as reviewers on the CFS SEP at some point in time (obviously, they did not review their own applications).

In 2014, new grants accounted for 41% of the total spending amount, but in 2015 it totaled $2,027,750 or about 30% of the total. This shows how the impact of new grants carries over to each year they receive funding, lifting the overall numbers.

The big win this year can be seen most clearly by looking all the way back to 2008:

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%

Unlike in 2013, when the increase was large simply because 2012 had decreased so dramatically, the increase from 2014 to 2015 is real.

What Does It Mean?

A 15% increase is good news. But this does not mean all our problems are solved, by any stretch of the imagination.

This degree of funding increase is highly unusual. Of the 138 categories that received an increase in funding, only 26 categories (19%) saw an increase that was the same or bigger than ME/CFS.

Furthermore, even if a 15% increase could be sustained year after year (something that would also be extremely unusual), it would take ME/CFS a very very long time to reach the level of funding we know is needed now. Even at 15% per year, ME/CFS would not break the $10 million barrier until 2018. It would take until 2023 to break $20 million, and it would be 2035 before we broke $100 million per year.

I don’t know about you, but I can’t wait twenty years to see ME/CFS receiving the same funding level that multiple sclerosis receives right now. 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.


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12 Responses to 2015 NIH Spending on ME/CFS Studies

  1. Anonymous says:

    It is heartening to learn that no psych studies received funding in 2015.
    It is very interesting that there was an increase in funding, though as you say, the increase is probably temporary.
    And yet we need/deserve so much more than this 20% increase!
    We need significant evidence of a real shift in NIH’s focus.

  2. Marcie Myers says:

    Dear Jennie, I so love your blogs. You are always right “on the money” about issues. Can almost take it to the bank. Thank you. Marcie

  3. “I can’t wait sixteen years to see ME/CFS receiving the same funding level that multiple sclerosis receives right now.”

    Aren’t there a LOT more of us then of them? Or am I crazy?

    I know that research in one area can lead to improvements in general knowledge which then helps other areas, to it isn’t quite as bleak as it seems.

    But I’m still praying for RESPECT in 2016. Apologies would be nice. Getting pushed to the front of the research-dollar line would be nice. SOMETHING done would be very nice.

    But I can tell you the general populations hasn’t even heard of us – I get the same old questions STILL after 27 years.

    • Jennie Spotila says:

      Yes, more people with ME/CFS than MS. if we got the same spending per patient, we would get as much as $250 million per year.

    • Deborah Waroff says:

      Thanks for the descriptions Jennie. Very interesting and great work, as ever. I wonder if the crazy SEP member who dinged Mady Hornig and Ian Lipkin’s biome research because MEcfs is “psychosomatic” perhaps moved Dr. Collins to request a change. He had promised Dr. Lipkin the ignoramus would go. Still, they only received half-funding on the $1.25 million proposal and are donating some labor costs (their own.)
      The breakdowns by subject are welcome but the “increase” just statistical noise. AIDS gets $3-plus billion annually. (By act of Congress AIDS gets 10% of the entire NIH budget.) Dedicated scientists at NIH would pair our issues with the closely matching AIDS ones instead of spending on spurious “AIDS” studies like Imelda Marcos buying shoes.

  4. Cheryl says:

    Thank you Jennie for keeping up on this for all of us.
    I am wondering how this would look adjusted for inflation. I know general inflation indices have been low ( to wit barely any COLAs for disability) But health costs ( and I imagine research costs) in general are increasing at a much higher rate. Figuring all that kind of stuff out was my thing a lifetime ago, I can’t do math anymore to save my life. That said, I think it’s important to keep those kind of things in mind when looking at increases.

    Sometimes a study result will in and of itself promote increase in spending. Let’s hope that comes about soon. The other factor, of course, is Congress. I remember when AIDS was an election topic. I can only fantasize on that one : )

    with gratitude…..

  5. billie moore says:

    Excellent and useful analysis, Jennie. Thank you. It might even bring hope to some that one or more of these studies might bring a breakthrough in finding a marker. No doubt about it though, the disease needs that $250,000,000 a year from the NIH for research and Centers of Excellence. Anyone who writes or talks to their members of Congress or the Senate, use that number!

  6. Simon McGrath says:

    Thanks for the invaluable analysis – great to have hard data on how much NIH actually spends

  7. Carollynn says:

    Thank you so much for carrying these threads for us. The fact that psychological studies received $0 in 2015 is maybe the best news out of everything we’ve worked for in the last few years. Is it too soon for me to feel like the tide is turning? (Though, following that metaphor, just before and just after a low tide, the beach looks pretty much the same, yet not for long.)

    Also, it’s instructive to note that in 2012, the year after PACE came out, 20% of the ME/CFS budget went to psychological studies. It was a big chunk of what was allocated to us, but neuroendocrine studies always got more. Interesting then how stuck public sentiment has been in the psychological perspective.

    Looking at the 2009-15 spending, can you forgive me for asking if you’d remind me what the “not related to ME/CFS” part means/meant?

    • Jennie Spotila says:

      Ah, good question! If you look at 2012 spending as an example, you will see funding for a grant studying nausea and malaise after administration of diabetes drugs, and two grants on XMRV after the Lipkin study established that XMRV had nothing to do with ME/CFS. In my opinion, these three grants have nothing to do with ME/CFS research, so I counted them as unrelated.

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