(Thanks to Jennie Spotila for her advocacy work and letting Health Rising reprint her blog on NIH funding. Jennie presents some good news – an actual increase in funding at the NIH in 2013 – and for good grants by good investigators. It wasn’t a huge increase and we’re not nearly where we need to be, but after years of declines and stagnation, it was a step in the right direction.
(On the other hand the news that the review panel for ME/CFS gets about six applications per session was disappointing.)
OccupyCFS – a place to go for accurate and in-depth reporting on advocacy issues.
If you want to keep up on ME/CFS advocacy, Jennies blog, OccupyCFS is the place to go. Jennies focus on advocacy can be summed up in this line from her blog “I think it’s important to shape our advocacy based on evidence and facts”. That’s a foundation for accuracy and success and that’s why I always go to Jennies blogs.
Tomorrow we present two calls for a much bigger step in funding. )
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 lists a total of $5.1 million for ME/CFS research in 2013, an increase of 13% over 2012. And for the first time ever, I think the numbers look better on closer examination because of how the spending was allocated.
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.
The slope isn’t this high – but it is a step in the right direction. Tomorrow we present two efforts to greatly increase spending.
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 16 grants listed for 2013 spending (one grant is listed twice because funding came from two institutes) for a total of $5,118,721. This is an increase of $600,539, or 13.3% from the 2012 funding.
Unrelated Grants
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.
Category Breakdown
After deducting the unrelated study, we are left with total ME/CFS spending of $5,041,521. 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 Shungureceived $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, three 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. 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:
| 2009 | 2010 | 2011 | 2012 | 2013 | |
|---|---|---|---|---|---|
| Total spending | $4,844,044 | $6,194,042 | $6,346,148 | $4,518,182 | $5,118,721 |
| Not CFS Related | 7% | 6.5% | 0 | 1.77% | 1.5% |
| XMRV | 15% | 29.3% | 27.5% | 16.43% | 0 |
| Psychological | 12% | 12.3% | 13.5% | 20.14% | 10.4% |
| Orthostatic intolerance | 25% | 13.5% | 13.5% | 7.01% | 11.7% |
| Neuroendocrine Immune | 42% | 38.3% | 45.5% | 54.65% | 76.4% |
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 four new grants in 2013 (just like 2012) totaling $1,763,585, or 34.5% of the overall total. This is an increase of $737,208 over 2012′s new grant spending. All four 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.
Upward Trend
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) | |
| 2008 | $3,175,262 | ||
|---|---|---|---|
| 2009 | $3,810,851 | $635,589 | 20% |
| 2010 | $4,248,535 | $437,684 | 11.5% |
| 2011 | $5,009,672 | $761,137 | 18% |
| 2012 | $3,696,068 | ($1,313,604) | (26.2%) |
| 2013 | $5,041,521 | $1,345,453 | 36.4% |
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.
Prove It
While these numbers are 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 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 36% (or more) increases for the next five years.
So, well over twenty million has been spent on CFS research by the NIH in the last six years.
How much do we know now, that we didn’t, thirty years ago? Anyone? RP
Not sure if you mean that rhetorically, but I think we’ve learned a fair bit just in the last six years. We know XMRV is not associated with ME/CFS. The Lights’ post-exercise gene expression studies and Broderick’s systems modeling results are very compelling. The microbiome work should be interesting. Shungu’s work has treatment implications, and Jason’s study could be a game changer. There’s good work being done, and work funding by non-NIH sources is also teaching us a lot. And Betsy Keller’s study 2 day CPET study published this week was actually supported by an NIH grant, and that paper is excellent.
Is NIH investing a lot? Not by a long shot. But is good quality science being done with the small amount of money invested? I think yes, in general.
Ha! I didn’t know Keller’s research was supported by an NIH grant – that’s cool 🙂 Now that she’s had a successful study hopefully she’ll be able to get another and bigger grant.
My ranting is about the system.
We vote against our own best interest when we vote for those that game everything and profit from misery and disease. Primarily Big Pharma.
Most don’t realize that the pharmaceutical companies very much run the entire health care and research systems world wide where profits are the main drivers, and there are no “cures” because that’s not profitable, treating on a regular basis is, if you can get that. RP
I keep hoping for a French Revolution American style. I’ll spare you my feelings about Big Pharma etc.
How much could now be known if funding for the past 30 years correlated with how life altering and devastating this illness is?
Things would be a lot different! This is such a key issue for me…It kind of encapsulates everything. You would hope that NIH funding would be based on need, but that clearly isn’t so. In fact as ME/CFS demonstrates need plays very little in the NIH’s decisions where to allocate funding. (1,000,000 people in the US, high rates of disability, huge economic losses – $5 million/year).
The NIH appears to allocate funding based on a variety of things; researcher interest, inertia, dogma…..what’s hot politically ….and I’m sure other thiings – but definitely not need – that’s way down the list.
I think research dollars are based on the possibility of making huge sums of money for Big Pharma when someone else has done the work of figuring out what’s wrong and then they can develop something that keeps symptoms at bay, not cured – as Rich Perillo says – there’s no money in a cure. Then the meds will cost 1/4 of your annual income til their patent runs out in 16 to 20 yrs. Jaded? Who me?
Thanks for this Jennie and Cort.
It would be an interesting exercise, if possible, to track combined public and private funding over the last few years although whether the NIH would be shamed by the comparison or see it as an opportunity to substitute public for private funding is debatable.
I’m looking forward to Baraniuk replicating the GWI exercise/brain study on ME/CFS patients given the headlines the GWI study generated (‘GWI is real after all’). It would also be an interesting quid pro quo to see how GWI patients react to the repeat CPET protocol.
I think they would be shamed. I wonder in how many other disorders private funding comes close to equaling public funding. It would be interesting to see what that ratio is in other disorders.
I was diagnosed with CFS at Mayo Clinic Rochester, MN in 2010. I was also found to have Supraventricular Tachycardia, Polyclonal Hypergamma globulinemia and they said I had Myofascial pain syndrome. My biggest complaint is the pain.
I recently found out to have an autoimmune Atrophic Gastritis. I cannot absorb the nutrients correctly. Therefore my body cannot produce the energy required to function correctly. Symptoms of CFS…falling asleep, fatigue, can hardly lift legs to walk, light sensitivity, Pain, SVT, bleeding problems (anemia), sore throat, night sweats, low grade fevers. My pain now continues to be tremendous-back pain (my back is fine according to MRI). My gall bladder not working correctly but NO stones. I really feel pain is more associated with my pancreas…waiting to see general PC.
Also wanted to say that I had Low Light Laser treatments done to rid me of allergies. This took me out of worst walking and light sensitivity symptoms. Contact me if you want any further info or if I could be of any assistance.
New research finds that 40% of back pain is caused by bacterial infection, not slipped discs etc. You can find those studies online and see if your doc is willing to try the recommended antibiotics to see if it makes your back well. Be sure to find a bonafide
medical study to print and take to the doc.