There is no denying or avoiding the importance of the IOM report and its associated controversies, but ME/CFS advocates must keep eyes on the prize: NIH funding for ME/CFS research. The 2014 spending numbers are out and NIH did not make headway on ME/CFS.
ME/CFS research spending totaled $5,924,018, or 231st out of 244 categories. In 2013, we were 226th out of 237. Fibromyalgia research received twice as much; TMJ received 3.6 times as much; Lyme disease received 4.6 times as much; and MS received more than 20 times as much research funding. Ironically, “burden of illness” research on many different diseases received 14.6 times as much research funding as ME/CFS, a disease with a documented economic burden of $20 billion a year.
Every year, I dig into the numbers reported by NIH. You can read my analyses of 2011, 2012 and 2013 spending. In 2014, NIH increased its ME/CFS research spending by $362,421 over 2013, or 6.5%. We are one of only 17 categories (7% of the total) to have funding stay essentially flat compared to 2013. Significantly, 62% of the disease categories had funding increases in 2014, putting the lie to the “funding is scarce” excuse.
For the first time since 2011, there are no grants included in NIH’s list that are unrelated to ME/CFS. The projects broke down this way:
- Only one study investigated psychological treatments. Dr. Michael Antoni received $557,747 for his study of telephone based patient-partner cognitive behavioral stress management.
- Two grants will study orthostatic intolerance in some way. First, Dr. Dikoma Shungu received 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. Second, Dr. Leonard Jason received $389,326 for his grant to study ME/CFS prevalence among young people, and examine whether orthostatic intolerance is related to neurocognitive function.
- Dr. Ben Katz received $701,137 for a very important new grant to conduct a prospective study of CFS in college students who develop mononucleosis. These kinds of epidemiological studies are critical to understanding the natural history of ME/CFS.
- Neuroendocrine immune and biomarker studies are the biggest category of spending, by far. Dr. Fabien Campagne is studying gene expression profiles as possible diagnostic biomarkers. Dr. Roland Staud and Dr. Leorey Saligan both continued their work on markers and mechanisms for fatigue. Dr. Jim Baraniuk continued his grant on exertional exhaustion. Dr. Luis Nacul received $539,645 for a longitudinal study of immunological and virological markers.
- Five additional new grants were awarded to look at immune signaling and biomarkers. Dr. Jarred Younger received $493,846 to conduct daily immune monitoring in ME/CFS, healthy, and sick subjects. Dr. Roxana Moslehi received $273,447 to investigate patients from Dr. Dan Peterson’s practice, looking for genetic and immune links to CFS, autoimmune disease and Non-Hodgkin’s lymphoma. Dr. Jim Baraniuk received $272,125 for his study of miRNAs in cerebrospinal fluid, looking for biomarkers and subsets. Dr. David Patrick of the University of British Columbia received $196,179 to look at immune gene expression after an exercise challenge. Finally, Dr. Mary Ann Fletcher received $487,064 for a very important study of gender differences in ME/CFS patients, extending important work on immune signaling and pathways.
The main reason to do this analysis is to track the year to year trends in research spending. And the research category trends are still pretty good.
|Not CFS Related||1.7%||1.4%||0|
(To see the analysis going back to 2008, click here.)
As you can see, the trend is pretty steady. The spending on psychological studies remained even from 2013, and there is only a slight variance in the orthostatic and neuroendocrine immune categories.
Every single funded grant was reviewed by the CFS Special Emphasis Panel, although that does not mean that every single ME/CFS application received by NIH was sent to that Panel. I think it is pretty likely though, unless an applicant requested and justified sending the application to a different study section.
Another important stat is that there were six new grants in 2014 (Katz, Younger, Moslehi, Baraniuk, Patrick, Fletcher) for a total of $2,423,698. That’s 41% of the total amount. It’s great to see new projects starting, but it reveals a vulnerability too. Just keeping our research funding steady at this low level requires many successful new applications each year. It will take conscious effort from NIH and from researchers to push our funding level higher.
The overall funding trend is not terrible, but it’s not great either:
|Adjusted Spending||$ Increased (Decreased)||% Increased (Decreased)|
As I said, our funding level basically stayed flat from 2013 to 2014, with both years rounding up to $6 million. Sure, a 6.5% increase is better than nothing, but only 17 of 244 research categories stayed flat in their funding. A whopping 151 (or 62%) of those categories saw an INCREASE in funding. So there is obviously money to go around.
That’s the real metric here. Our research funding has been between $3 and $6 million per year for the last seven years. And what does NIH project for 2015? Another $5 million. So despite the P2P report, and all the CFSAC recommendations, and the IOM report, we are at the same level and projected to remain there.
This is unacceptable. I don’t know what has to happen to force a change, but force it we must. No matter what you think of SEID or the IOM criteria or the news coverage or your fellow advocates, we must find a way to force NIH to dramatically increase its investment in ME/CFS research.
Because while I am not a fortune teller, I can easily predict that if we do not secure this increased investment then we will be sitting here in 10 years and having the same damn conversations about SEID and IOM and news coverage and our fellow advocates. Nothing will change if the research funding does not change. Nothing. I guarantee it.