The largest pool of money available for investigator-initiated CFS research grants is the NIH. Although miniscule relative to other areas of research, $6 million a year is the largest annual research investment in CFS from any source. Given the significance of this investment, advocates and NIH representatives routinely disagree over how the money is spent and whether it is going to the right projects. Looking at one year of research, as I did with the NIH’s spending on CFS in 2011, is interesting, but year to year comparison is important as well. Is funding getting better each year? Are the projects actually investigating CFS? And what effect did XMRV have on CFS funding? I’ve examined the data available for 2008 – 2011, and the answers are complicated.
Here’s the broad view comparison to start out:
|Not CFS Related||9.3%||7%||6.5%||0|
Several things stand out in that table. First, the percentage of funding for both psychological and orthostatic intolerance studies has dropped since 2008. Second, the amount of money going to non-CFS grants appears to have dropped. Third, while the percentage spent on neuroendocrine immune studies has generally risen, this category has never received as much as half of the NIH spending. Finally, XMRV represents an enormous share of the funding, and I’ll examine that in greater detail below. First, let’s drill down into each year and see whether the money went.
In 2008, NIH reported spending $3,503,942 on CFS research. The total includes a study by Dr. David Williams examining pain processing in interstitial cystitis and fibromyalgia. It is true that there is tremendous overlap between CFS and pain conditions such as fibromyalgia and interstitial cystitis, but the study does not include CFS patients and so the relevance to CFS is by inference only. I don’t think it makes sense to count this funding as “CFS research.” And it’s not an insignificant amount of funding; this study received $328,680 or 9.3% of the total. The remaining research breaks down as follows:
- Psychological studies – $747,470 (21.3%). This includes a study by Dr. Friedberg examining the effectiveness of two sessions of CBT, and a study by Dr. Antoni evaluating telephone based CBT. Another study evaluates CBT for insomnia in CFS. There is also a tiny amount ($940) to Dr. Friedberg examining psychiatric comorbidity in CFS but this appears to be a subproject of a much larger grant.
- Orthostatic intolerance – $1,153,528 (33%). This includes studies by Drs. Stewart and Freeman discussed in the post on 2011, as well as a study by Dr. Biaggioni.
- Neuroendocrine immune studies – $1,274,264 (36.3%). This includes studies by Drs. Fletcher, Baraniuk, and Huber. The mysterious Viagra study is included at $19,164. Another grant ($188,125) went to Dr. Hartz examining the impact of complementary alternative medicine on chronic fatigue, with CFS as a subset. The diagnostic criteria are not specified in the abstract. There is also a grant to Dr. Mathew ($14,840) looking at neurometabolites in CFS but it is the subset of a much larger grant and no abstract is available.
In 2009, NIH reported spending $4,844,044 on CFS research. Once again, the Williams study on interstitial cystitis and fibromyalgia is included for $328,680. There is a very small grant ($2,692) entitled “Effects of Aerobic Exercise on Cognition, Mood and Fatigue After TBI” but no abstract is available. Combined, these two non-CFS grants total $331,372 (7%). The remaining funding breaks down as follows:
- XMRV – $701,821 (14%) There is only one grant for XMRV in 2009, and it was internal to NIH. The abstract is confusing because it is about developing gene therapy, and only a few sentences relate to the genotyping of RNASEL and its relevance to XMRV in CFS.
- Psychological studies – $573,822 (12%). This includes the grants to Drs. Friedberg and Antoni.
- Orthostatic intolerance – $1,208,968 (25%). In addition to Stewart, Freeman and Biaggioni, there is a new grant to Dr. Ocon.
- Neuroendocrine immune studies – $2,028,061 (42%). This includes work by Drs. Fletcher, Baraniuk, Huber, Mikovits, Hartz, and Spencer. Another grant ($35,000) supported a researchers’ meeting entitled “From Infection to Neurometabolism: A Nexus for CFS.” Once again, the Viagra study is included ($1,587).
In 2010, NIH reported spending $6,194,042 on CFS research. The Williams study is included once again. There is also a study by Dr. Juan Yepes examining the stress response in temporomandibular disorders and fibromyalgia. As with the Williams study, there is overlap between CFS, fibromyalgia, and temporomandibular disorders but these studies apply to CFS only by inference. The funding totaled $407,210, or 6.5% of the reported total. Here’s the breakdown of the rest of the money by research category:
- XMRV – $1,807,792 (29.3%). This included Dr. Hanson’s study (also funded in 2011), but the big item here was $1,538,297 for NIH research into the possible source animal for XMRV and testing gibbons in zoos for XMRV and another gammaretrovirus, GALV. The study did not examine CFS patients or any aspect of the possible relationship between XMRV and CFS.
- Psychological studies – $764,552 (12.3%). Again, this includes the Antoni and Freidberg studies.
- Orthostatic intolerance – $837,534 (13.5%). These are the same studies as were funded in earlier years (Stewart, Freeman, and Ocon).
- Neuroendocrine immune studies – $2,376,953 (38.3%). This includes studies by Drs. Fletcher, Schutzer, Huber, Mikovits, Theoharides, Klimas, and Spencer. This also includes the Viagra study ($83,644).
More details on the 2011 spending can be seen in my earlier post. The quick breakdown is as follows:
- XMRV – $1,743,776 (27.5%). This included Dr. Hanson’s study, as well as studies by Drs. Roth and Maldarelli. The big ticket item ($1,043,040) was the Lipkin study.
- Psychological studies – $857,397 (13.5%) was spent on the Antoni and Friedberg studies.
- Orthostatic intolerance – $856,346 (13.5%) spent on studies by Drs. Stewart, Freeman and Ocon.
- Neuroendocrine immune studies – $2,888,629 (45.5%) including new grants to Drs. Light, Natelson, and Saligan.
The XMRV Effect
The investigation of XMRV had a large impact on NIH funding for CFS. As I said in my earlier post and my post about the Lipkin study, there is no question that the connection between XMRV and CFS had to be investigated. However, the numbers show that XMRV funding artificially inflated the amount of CFS spending and as noted above, a great deal of the XMRV spending is actually on basic research that did not involve CFS samples or disease mechanisms.
Between 2008 and 2009, CFS spending increased $1,340,102 or 38%. That looks impressive, but 52% of the increase ($701,821) was for XMRV (and a basic science grant, at that). The effect is even more dramatic in 2010. That year, overall CFS spending reportedly increased $1,349,998 or 28%. But XMRV spending increased $1,105,971 over 2009. That means that 82% of the overall CFS increase in 2010 was an increase in XMRV spending. As detailed above, most of the XMRV spending allocated to the CFS category in 2010 was spent on a grant looking for an animal source of XMRV in zoos, as opposed to research on CFS patients. It’s not until 2011 that this effect disappears. In 2011, overall CFS spending increased by only $152,106 or 2.5% but XMRV spending decreased by $64,016. In contrast to 2009 and 2010, most of the XMRV spending was actually used in CFS studies as opposed to basic science.
Are we better off?
Comparing funding numbers is complicated because there are so many ways to crunch the data. I’ve identified grants that should not be counted as CFS funding, such as the Williams study on interstitial cystitis and fibromyalgia. Not all of the XMRV funding can be fairly categorized as CFS spending, either. There is overlap with gene therapy, genetics, infectious disease, and cancer research – and in fact, the grants are included in those categories as well. If every basic science grant that could be related in some way to CFS by inference or hypothesis was included in the CFS category, our funding numbers would be impressive indeed. And there is the difficulty of how to categorize the psychological studies which are offensive to many patients, but which do study CFS cohorts.
Here is my bottom line snapshot. I excluded the non-CFS grants, the XMRV funding for basic research, and the Lipkin study since it was awarded outside the usual applications process. I included the psychological spending, despite my misgivings about it. Here’s what was left:
|Adjusted Spending||$ Increased||% Increased|
I was surprised to see the increases hold up, although it’s much more modest than when XMRV is included. Spending for 2012 is projected to be $6 million. If all of that money is actually spent on CFS studies, it will represent a significant increase over 2011 because the Lipkin study funding would be shifted to other CFS studies. That would be a significant win for CFS patients. It will be interesting to see if NIH meets that projection. The CFS Special Emphasis Panel met to review grants on June 25-26, 2012, and hopefully there will be new CFS grants announced soon.