(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.

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:

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.

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