Update: 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:
- For the first time since at least 2009, there were no psychological studies funded.
- Two grants continued from 2014 study orthostatic intolerance in some way. Dr. Dikoma Shungu received $499,000 for his grant, scheduled to end in December 2015, to use imaging, plasma, urine, and spinal fluid to examine oxidative stress as a way to distinguish ME/CFS patients from controls. Dr. Leonard Jason received $390,527 to examine whether orthostatic intolerance is related to neurocognitive function in pediatric ME/CFS patients.
- Dr. Ben Katz received $699,593 for his important prospective study of patients who develop ME/CFS after mononucleosis in college.
- Ten grants continued from last year examine neuroendocrine immune function and biomarkers. Dr. Fabien Campagne received $522,142 for his work on gene expression profiles as possible diagnostic biomarkers. Dr. Roland Staud received $363,750 for his study on peripheral and central mechanisms of fatigue and pain. Dr. Leorey Saligan received $117,707 for his NIH intramural project on cytokines and physical or emotional correlates of fatigue in ME/CFS and other diseases. Dr. Jarred Younger received $435,803 to continue his daily immune monitoring in ME/CFS, healthy, and sick subjects. Dr. Roxana Moslehi received $153,000 for her study of genetic and immune links to CFS, autoimmune disease and Non-Hodgkin’s lymphoma. Dr. Jim Baraniuk received $340,156 for his study of exertional exhaustion, and $155,500 for his study of miRNAs in cerebrospinal fluid. Dr. David Patrick received $75,649 for his examination of immune gene expression after an exercise challenge, which will end in 2016. Dr. Luis Nacul received $613,400 for a longitudinal study of immunological and virological markers. Finally, Dr. Mary Ann Fletcher received $487,064 to continue her study of gender differences in ME/CFS patients.
- Four brand new grants were awarded in 2015. Dr. Dorothy Hudig of the University of Nevada, Reno received $217,824 to examine the risk of CFS due to the action of certain IgG receptor genes. Dr. Maureen Hanson received $236,589 for a new grant to study the cellular metabolism of lymphocytes in ME/CFS patients. Dr. Lubov Nathanson of NOVA Southeastern University received $426,612 to use genomic approaches to identify new ME/CFS biomarkers. Finally, Dr. Ian Lipkin received $766,163 to undertake microbial discovery and immunity in ME/CFS.
- There is one grant that is a bit odd. Dr. Marshall Williams received $583,921 to study the effects of virus protein-induced inflammation. This is not actually a new grant. The project history shows that Dr. Ronald Glaser received this grant in 2010 to study EBV-induced inflammation and sickness behavior in mice. It was never counted as an ME/CFS grant until this year, when it was transferred to Dr. Williams. I wrote to Dr. Williams to ask how the grant has changed to make it specifically relevant to ME/CFS, but as of this writing I have not received a reply.
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.
We Are All Noncompliant
Noncompliant logo from Bitch Planet
I learned something about ME/CFS advocacy from a comic book. Now wait, stay with me. I realize this sounds bizarre, especially coming from me. I haven’t read a comic book since I was eight years old.
Enter Bitch Planet, a comic written by Kelly Sue DeConnick and drawn by Valentine De Landro. The comic is, as DeConnick says, a take-no-prisoners, angry feminist, give-the-establishment-the-finger story of a future world dominated by men to an absurd degree. In this future world, any woman who is too loud, too opinionated, too greedy, too big, too small, too black, too anything the establishment doesn’t like, is labeled noncompliant. If the powers that be deem that a woman is permanently noncompliant, she is shipped off-world to Bitch Planet, a prison where she will pay for her sins (and be victimized by the men and compliant women who work for the system).
I love it. Everyone should read it (although fair warning, it is rated “Mature” for a lot of reasons). But it wasn’t until my second read through the series that I saw the lesson for ME/CFS advocacy:
We are all noncompliant. No matter how we approach ME/CFS advocacy, no matter how reasonable our requests, we are noncompliant because we are asking that things be done differently.
The government believes that it already acts in our best interests. Newcomers to the field believe they know the best way to do this science, without the input of patients. Many policymakers would prefer that we sit down, shut up, and let them do their jobs the way they want.
Those of us who demand accountability, data, and respect are inconvenient, even “vexatious.” It doesn’t matter how nicely we ask. It doesn’t matter how softly we speak. It doesn’t matter how many times we say “yes” or “ok” or “thank you.” The mere fact that we reject the popular narrative of “chronic fatigue,” and that we expect our government to do what is necessary to solve the problems of this disease, means we already do not comply with the way things are being done.
I say, be gloriously, defiantly noncompliant. Speak truth to power. That doesn’t mean screaming and giving people the finger all the time. We must use the tools of data and reason and history and personal narrative, as well as the tool of anger. But as we advocate, we must recognize that the very act of advocating means we’re not playing along, and that some people will resist us for that reason alone.
But that doesn’t worry me. Because noncompliance is an act of bravery, and I already know you are brave because you are still here. You have not let ME/CFS defeat you, and your advocacy asks for reasonable things: adequate funding, adequate education, adequate treatments. The nature of the beast is for these reasonable requests to be met with some degree of resistance.
Be brave.
Be noncompliant.