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:
| 2008 | 2009 | 2010 | 2011 | |
|---|---|---|---|---|
| Total spending | $3,503,942 | $4,844,044 | $6,194,042 | $6,346,148 |
| Not CFS Related | 9.3% | 7% | 6.5% | 0 |
| XMRV | 0 | 15% | 29.3% | 27.5% |
| Psychological | 21.3% | 12% | 12.3% | 13.5% |
| Orthostatic intolerance | 33% | 25% | 13.5% | 13.5% |
| Neuroendocrine Immune | 36.3% | 42% | 38.3% | 45.5% |
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 | |
| 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% |
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.
Thanks, I think this is an important topic…
Excellent work! Just looking at numbers puts me in a spin, but to have boiled these down in such an exemplary manner gives us something to watch for in the future. Thank you very much, Jennie.
Thank you so much for keeping track ofthe research spending at the NIH. If I may ask a question (I may have mised that while reading) does tha tinclude both intra and extra-mural research?
Excellent question, Kati. Some intramural research is included. The Maldarelli study in 2011, the Eiden XMRV study in 2010, and the Dean study in 2009 – all XMRV studies – are included in the totals I describe in the post. The Saligan study in 2011 is also intramural. It is possible that there is other intramural research going on that is not accounted for in the totals, although I am not aware of any besides what I listed. For example, the Maldarelli study attracted a lot of attention when it began. But maybe there is other work going on in the Clinical Center? I don’t know how all that money is accounted for or “charged” to CFS.
The XMRV effect is interesting, but it’s still pennies on the dollar.
If you use the Australian DALY figures (adjusted for usa prevalence), along with the rest of the WHO reported DALY figures and compare with research funding, we’re still short by $65-130 million compared to the mean (assuming prevalence between 0.25-0.5%)
Thank you, Jennie. Very useful.
Andrew’s point is well taken – the funding levels are still far short of where they should be based on prevalence, burden of disease and economic cost to the country
It is a disgrace that an extra $1 million in 2012 (IF we get it) would represent a 20% increase in funding. DISGRACE!
Thanks for posting this – the information is really useful.
When Coffin gave his talk at the NIH workshop last year, he ended by saying too much money had been “wasted” chasing this retrovirus. I remember being appalled that was included in what should have been a talk about ressearch, not political choices. But that’s what happened to the good NCI study on gamma retroviruses (HGRVs) – their funding was cut off. I believe there are pockets of information about this disease and HGRVs that are on the back burner at the moment because of politics, and that it’s going to come back around again – but first we have to establish the role of multiple pathogens in this disease. And I’m hoping that the new private research initiatives will accomplish just that.
I think your spending chart indicates that even within NIH, the new research is attractive – younger researchers at NIH want to be part of it. And yes, the “Science” study got them to actually LOOK at this for the first time. (I also have the sense that younger scientists are more likely to actually know someone with The Disease.)
Having listened to NIH describe how their bizarre funding machine works, we need a special emphasis panel (SEP) with the appropriate specialties represented – not oral and muscular! Did you know that just one member of the SEP can veto the entire project? I’d like to see the ratio of INITIAL submissions tom acceptances and be able to compare that with other diseases – they claim they don’t keep that record – if so, it’s a disgrace. None of the other funding agencies in Washington (specifically National Science Foundation and National Institute for the Humanities) operate in such an insular manner. They work like academics generally works – application, references, peer review, decision.
One buzzword to use is “parity” – particularly if you note that it is perceived by CDC to be a female disease (I think CDC greatly exaggerates that, but we could use that to our advantage). All we are asking for is funding parity.
Again, your chart can be very useful in making that case. Once they were no longer interested in us as victims of a new retrovirus, they went back to the old patterns of dismissal and prejudice.
In the meantime, our best political tactic should be to focus on the plight of young people with this disease, and that it is both deadly and a life sentence for many. We should be trying to get personal stories in the local media.
So is how I would use your information – the added funding is a sign that NIH researchers are taking this disease much more seriously, but for the sake of the young people suffering from this disease, we need funding parity, not just improvement. And some more sunshine on the process couldn’t hurt.
Maybe we can use that in the presidential campaign – who will open NIH up to an auditor?
It is understandable to have misgivings about psychological research in ME and CFS given how badly the scientific waters have been muddied by such research. However both of these researchers are conversant in ME and CFS (not the gee I feel tired and depressed kind).
Where these studies are valuable is when they are published in the same types of journals as the studies put out by the “Wessely School,” because they contradict the conclusions of the Wessely School studies. Antonini’s previous work with Dr. Klimas shows that patients with ME and CFS are no different than patients with cancer and HIV when it comes to CBT. This directly contradicts the conclusion that CBT is curative in ME and CFS. We all know it isn’t considered curative in cancer or HIV – merely helpful at a tertiary level.
Most psychiatrists are not going to be reading virology and immunological journals because that is not their interest so in order to reach this specific audience studies need to be published in the journals psychiatrists do read and explain why previous conclusions remain in doubt.
Will they help identify the “cause (s)” of ME and CFS? Rather unlikely, but they may influence the thinking in psychiatric circles which could eventually translate to less stigma and more realistic expectations of non-specific treatments such as CBT. After all no one says,”Let’s just give CBT a go and skip the rest,” in cancer or HIV.
Good analysis.
Both retroviruses, how could the contagion factor of XMRV be different or far more reaching than HIV?
Not even HIV (the most well-funded retrovirus in history) ever claimed an infect:harm relationship to extended family members that you hear about with countless CFS & ME cases.
It has NEVER been proven that a retrovirus (e.g., HIV) can cause harm. To top that, now we’re supposed to believe that a retrovirus (e.g., XMRV) is aerosoled? Or saliva-based?
It doesn’t add up, and I don’t subscribe to any of it.
Why would our allied government be covering-up our illnesses caused by a yet-to-be-discovered pathogen?
Isn’t it far more logical that they are hiding a known pathogen from the past??
Likely tied to something *political*???
http://www.cfsstraighttalk.blogspot.com
I signed and thank you for your eforft.However, I strongly urge you to reconsider or re-work the sentence about the CAA and CDC in this petition. Government agencies and the largest CFS organization often have not been very helpful in communicating the true nature of our disease to the media. Other organizations are small and scattered. Is there a way to remain positive and not criticize specific agencies, while driving home the need to consult a broader base of organizations and knowledge in order for the media to become more grounded and accurate when reporting on the disease? They are the two most known sources of information (maybe WPI), and the media will continue to use them. It’s what you offer them, the media, that will make them receptive to and seek out you and your information, not your criticism of their current sources of information. I hope this is helpful. Thanks again, Margaret
Hi Jennie, Great analysis and summary of NIH spending. Sometimes the smaller amounts that are hard to account for relate to an investigator’s use of NIH-funded facilitites like General Clinical and Research Centers (now called Clinical and Translational Science Units). If one of these NIH-supported facilities exists at their institution, it can be accessed by clinical and bench scientists to conduct unfunded pilot studies with a local review/approval process that doesn’t necessarily require submission to NIH. The GCRC/CTSU has to account for and report the resources and often they end up with small amounts not linked to the usual study information available for RO1 or R21 awards.
One other thing — any sign of the large multicenter, multiphase “blood safety study” for XMRV that was sponsored by NHLBI through its REDS program in your searches?
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