2012 NIH Spending on CFS Studies

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

NIH spending on ME/CFS research has been controversial since I’ve been in advocacy, largely because the funding numbers are so low compared to the burden of this disease on people and the economy. I’ve examined the details of spending in previous years, including an analysis of 2011. The 2012 numbers are now available, and the news is not good at all: funding has fallen off a cliff to its lowest level since 2009.

First, recall that NIH had projected to spend $6 million on CFS research in 2012, the same as the amount spent in 2011. Unfortunately, NIH now says that it spent $5 million in 2012, and projects the same amount for 2013 and 2014. Even worse, when I dug into the actual grants, I found that NIH had spent far less than $5 million.

There are 16 grants listed for 2012 spending (several grants appear twice on the list because they received funding from more than one Institute) for a total of $4,485,544. This is a decrease of $1,860,604 or 29% from the 2011 funding. In 2011, ME/CFS was 218th out of 235 disease categories funded by NIH. In 2012, we dropped to 224th place.

Unrelated Grants

To make it worse, three of the grants NIH included in the 2012 ME/CFS list are not actually related to ME/CFS:

  • A grant to Dr. Matthew Hayes for $80,000 is investigating the potential mechanisms that cause nausea and malaise after the administration of a class of drugs for diabetes in the hope of developing treatments for obesity. I have no idea why this is categorized as CFS-related, unless it was the use of the word “malaise.”
  • Two grants relate to XMRV, and as such should also be excluded as non-CFS related. NIH’s own study on XMRV (the Lipkin study) established that XMRV is not found in CFS patients or controls, and the original Science paper was retracted in December 2011. There is no reason to allocate XMRV spending to CFS research. Dr. Monica Roth received $293,436 as part of her ongoing study in the integration of murine retroviral vectors. Dr. Jeffrey Cohen received $448,678 in a new intramural NIH study that did not detect XMRV in CFS patients or patients with other chronic inflammatory diseases, and also tested use of a particular drug in a person with herpesvirus infection – although that patient does not appear to have CFS.

These three grants account for $822,114 or 18% of the total NIH claims to have spent on ME/CFS. Obviously, less than $1 million is not much in research terms, but for our field it is a huge amount.

Category Breakdown

After excluding the three unrelated grants, we are left with thirteen grants for a combined total of $3,663,430. Let’s see how they break down by category:

So how does this stack up against prior years? Not very well.

2010 2011 2012
Total spending $6,194,042 $6,346,148 $4,485,544
Not CFS Related 6.5% 0 1.7%
XMRV 29.3% 27.5% 16.5%
Psychological 12.4% 13.5% 19.7%
Orthostatic intolerance 13.5% 13.5% 7%
Neuroendocrine Immune 38.3% 45.5% 55.1%

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

As you can see, the 2012 spending is the lowest total amount since 2008. Orthostatic intolerance research is at its lowest point in five years, and psychological research is at its highest percentage since 2008. The only good news is that for the first time in five years, neurological/endocrine/immune research received more than 50% of the total. But I’ve made this point before: if I’m a researcher and I see 20% of such a small amount of money going to psychological research, will I invest the time and effort to submit a biomarker proposal?

Another interesting point is that three of the grants funded in 2012 were new awards (totaling $799,157 or 21.8% of the total), and all four of those grants were reviewed by the CFS Special Emphasis Panel. Dr. Susan Maier, chair of the Trans-NIH ME/CFS Working Group, said at the October 2012 CFS Advisory Committee meeting that 18% of ME/CFS applications were funded in 2012, and that this represented a higher success rate than average at NIH. But according to Dr. Sally Rockey, Deputy Director for Extramural Research, that is not the case. Dr. Rockey’s analysis shows that the overall success rate for research grants at NIH in 2012 was 18%. I guess we should be glad for the parity, but if 18% of grants were successful then this means that there may have been only 20 applications for ME/CFS research at NIH in 2012. I checked with several sources, and they estimated that 20 to 22 applications were submitted to NIH last year. Obviously, such a low number of proposals will not get the job done.

XMRV Effect

Another issue that I’ve investigated is the effect of XMRV funding on overall ME/CFS research expenditures. Was XMRV funding raising the overall level of research funding? Or was non-XMRV funding increasing as well? Last year I said: “Spending for 2012 is projected to be $6 million. If all of that money is actually spent on CFS studies, it will represent a significant increase over 2011 because the Lipkin study funding would be shifted to other CFS studies. That would be a significant win for CFS patients.” Unfortunately, the exact opposite happened. When you strip out the non-ME/CFS related grants (including XMRV) for funding in 2008 through 2012, you see this:

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%)

XMRV spending did inflate the spending numbers in 2009-2011, but after stripping that out we still saw an increase in funding during those years. Now we are sliding backward, and fast.


Whether you use NIH’s raw number of $4,485,544 or my adjusted number of $3,663,430, the precipitously decline in funding remains evident. The NIH number represents a 29% decrease from 2011, and my adjusted number represents a 20.4% decrease from 2011. This is insane. NIH must do something to stimulate research in this area. There can be no argument about this. NIH must DO SOMETHING!

In testimony at a Senate hearing, NIH’s Principal Deputy Director Dr. Lawrence Tabak stated that NIH spent $386 million in pain research in 2011. NIH now reports that $479 million was spent on pain research in 2012, an increase of $93 million or 24%. One contributing factor for this meteoric increase was that the Affordable Care Act of 2010 included specific requirements for pain research and care. But whatever the reasons, it’s still a boatload of money. To me this reinforces the point that advocates have made over and over and over: there IS money available. It’s just being allocated to “higher priorities” than ME/CFS.


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11 Responses to 2012 NIH Spending on CFS Studies

  1. cort says:

    Fantastic analysis, Jennie – you’re keeping us on track with the feds! Thanks so much!

  2. Chris Heppner says:

    Many thanks–a great job of uncovering just what is happening, though the implications are dire–it is obvious that the NIH responds to activist lobbying–it really is sad that the CAA retired from the job of advocacy–we need it. Chris

  3. Joe Landson says:

    Thank you, Jennie.
    So we testify, they pat us on the head, they tell us we are making progress, and they reduce our funding.
    At least now you know why I tell jokes at CFSAC! 😉

  4. Rebecca says:

    Well done, Jennie. NIH: BADLY done!

  5. Milo Paradiso says:

    This has been the topic for my testimony. Not that I am expecting answers but it’s pretty sad going.

  6. Pingback: NIH and funding priorities | Speak Up About ME

  7. ann says:

    Shame on the NIH. Devastating to patients.

  8. Katrina Berne says:

    Jennie, thanks for doing this analysis and for your commentary, spot on as always.
    Sadly, As the number of diagnosed ME/CFS patients increases, NIH funding decreases. Obviously our tax dollars are being squandered elsewhere.

  9. Valerie says:

    Thanks, Jennie. A piece of info everybody should see. Sometimes I feel that understanding, independent research into worthy areas, and awareness is growing…and then, oops, other major areas are sliding backwards. So frustrating for all countries.

  10. Government money will never solve a government-censored illness, so I don’t think it really matters how much CFS gets allocated. Government-funded *science* is an oxymoron, because the government will never allow results that self-incriminate them.

    I wish the NIH wuold nix the CFS budget to $0, so that patients would realize that $6Million is a rounding error equal to zero anyhow (barely buys a paper clip in terms of scientific research).

    The real answers to solving CFS & ME (and GWS, Autism, Lyme, & AIDS) lie in private funds, and non-government funded research.


  11. Rich says:

    The big money lobbyists actually run the government. Big Pharma loses money when there is a “cure”, or, a very effective treatment for a degenerative disease. That’s why it almost never happens. Pain and fatigue (as in CFS) are the cash cows of Big Pharma, why would they kill them?

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