I have positive news to report: NIH spending on ME/CFS in 2013 was actually higher than it was in 2012. Are you shocked? I know I was. NIH spent more than $5.6 million for ME/CFS research in 2013, an increase of 25.7% over 2012. And for the first time ever, I think the numbers look better on closer examination.
The problem is not fixed, by any stretch of the imagination. ME/CFS spending fell to 226th out of 237 categories (we were 224th in 2012). Hay fever got almost twice as much funding; fibromyalgia got more than twice as much; TMJ got almost four times more; and multiple sclerosis received more than 22 times as much funding as ME/CFS.
I think it’s important to shape our advocacy based on evidence and facts, so let’s dig into the numbers. NIH had projected that it would spend $5 million on ME/CFS research in 2013 (see my previous analyses of of spending in 2011 and 2012). There are 17 grants listed for 2013 spending (one grant is listed twice because funding came from two institutes) for a total of $5,638,797. This is an increase of $1,153,253, or 25.7% from the 2012 funding.
Last year, I found that 18% of the money NIH said it spent on ME/CFS was incorrectly categorized. This year, I am pleased to report that only 1.5% of the spending was unrelated to ME/CFS. The study by Dr. Matthew Hayes received $77,200 in funding to investigate the potential mechanisms that cause nausea and malaise after the administration of a class of drugs for diabetes. Just like last year, I still don’t understand why this is counted in the ME/CFS category, but the grant is scheduled to end in 2014 so hopefully this will be the last of it.
After deducting the unrelated study, we are left with total ME/CFS spending of $5,638,797. Let’s see the category breakdown:
- Only one study investigated psychological treatments. Dr. Michael Antoni received $533,004 for his study of telephone based patient-partner cognitive behavioral stress management.
- Two grants examine orthostatic intolerance to some degree. First, Dr. Dikoma Shungu received $199,152 for a treatment study of an amino acid and its impact on oxidative stress. Second, Dr. Leonard Jason received $400,540 for his new grant to study ME/CFS prevalence among young people, and examine whether orthostatic intolerance is related to neurocognitive function.
- Two grants awarded last year to study the microbiome and ME/CFS continue. Dr. Maureen Hanson received $182,125, and Dr. Mary Ann Fletcher received $170,724.
- Five grants continued from 2012 investigate aspects of pathogenesis or neuroendocrine immune mechanisms, totaling $1,519,142. Dr. Theoharis Theoharides and Dr. Vincent Lombardi will conclude their grants in 2014. Dr. Nancy Klimas and Dr. Roland Staud are in the middle of multi-year grants, and Dr. Leorey Saligan has no start or end date listed on his internal NIH grant.
- Several grants, four of them new in 2013, are specifically designed to identify biomarkers differentiating ME/CFS patients from other disease groups. Dr. Dikoma Shungu has a new award for $499,000 to use imaging, plasma, urine, and spinal fluid to try to distinguish ME/CFS patients from patients with Major Depressive Disorder by examining oxidative stress. Dr. Kathleen Light and Dr. Mary Ann Fletcher will be continuing their biomarker work, although both grants wrap up this year. Dr. Jim Baraniuk received $335,300 for a new exercise and imaging study to test whether results from a GWI study apply to ME/CFS patients. Dr. Luis Nacul received $539,274 for a new longitudinal study of immunological and virological markers. Finally, Dr. Fabien Campagne of Weill Medical College received $528,745 in new funding to develop gene expression profiles as possible diagnostic biomarkers.
When compared to previous years, the numbers look even better:
|Not CFS Related||0||1.7%||1.4%|
(To see the analysis going back to 2008, click here.)
Look at those numbers! Psychological spending was HALF of what it was in 2012. That money, and the money spent on XMRV last year, has now moved over to the neuroendocrine immune category (including biomarker studies) to bring that category to its highest since at least 2008. This is a very good trend.
Several additional points of interest. First, the Office of the Director contributed $600,540 towards the studies by Dr. Jason and Dr. Shungu. The Office of the Director has provided funding in previous years, such Dr. Brigitte Huber’s study in 2011 and Dr. Natelson’s study in 2012. However, the 2013 contribution from the Office of the Director is far higher than in previous years. I’m not sure what accounts for that significant increase.
Second, there were five new grants in 2013 totaling $2,302,859, or 41.4% of the overall total. This is an increase of $1.5 million over 2012’s new grant spending. All five new grants were reviewed by the CFS Special Emphasis Panel, just like 2012. In fact, all of the external grants on ME/CFS were reviewed by the CFS Special Emphasis Panel.
Perhaps the most important metric for NIH spending on ME/CFS is to compare the real numbers year by year. I’ve removed all the spending that was not related to ME/CFS (including XMRV in 2012), and here is the trend:
|Adjusted Spending||$ Increased (Decreased)||% Increased (Decreased)|
In terms of real spending – i.e. money spent on grants actually related to ME/CFS – 2013 spending was the highest since 2008, and included the biggest increase (both $ and %) since 2008. I think this is a trend we could all get behind.
While these numbers are very good, the overall problem is not solved. Five million dollars is pocket change in scientific research, and grossly inadequate given the economic and human toll of ME/CFS. Dr. Ian Lipkin stated publicly that his application for a microbiome study was recently turned down by NIH, although we don’t know which review panel scored the grant or why it scored poorly. One source told me that the ME/CFS Special Emphasis Panel reviews approximately six applications each cycle, which means that applications have not increased in the last year. Multiple factors contribute to the low NIH funding for ME/CFS, and we will need multiple solutions to fix the problem.
Still, the funding for 2013 was much higher than the funding in 2012, and I applaud NIH for that. The real question is whether this is a fluke, or the beginning of a trend. I would like nothing better than to report 50% (or more) increases for the next five years.