Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research.
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.
Category Breakdown
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.
Trend Spotting
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.
| 2012 | 2013 | 2014 | |
|---|---|---|---|
| Total spending | $4,485,544 | $5,638,797 | $5,924,018 |
| Not CFS Related | 1.7% | 1.4% | 0 |
| XMRV | 16.5% | 0 | 0 |
| Psychological | 19.7% | 9.5% | 9.4% |
| Orthostatic intolerance | 7% | 19.5% | 15% |
| Neuroendocrine Immune | 55.1% | 69.6% | 75.6% |
(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) | |
| 2008 | $3,175,262 | ||
|---|---|---|---|
| 2009 | $3,810,851 | $635,589 | 20% |
| 2010 | $4,248,535 | $437,684 | 11.5% |
| 2011 | $4,602,372 | $353,837 | 8.3% |
| 2012 | $3,663,430 | ($938,942) | (20.4%) |
| 2013 | $5,561,597 | $1,898,167 | 51.8% |
| 2014 | $5,924,018 | $362,421 | 6.5% |
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.
Hi Jennie:
Thank you for the superb analysis of SEID funding over the past, current and potentially future spending. More important thank you for pointing the “critical” need to for an all out blitz on ME/SEID research funding on a large scale. As a community we are quite sick but it seems we “have” to focus 90% of our time on raising dollars through US Representatives, Private foundations, and philanthropy.
The billion list recently came out. Maybe with the IOM and P2P foundations might be a better target. I don’t have the answers, but I am willing to focus on getting research dollars maximized. More thoughts welcomed. Thanks again!
Thank you for this report. I agree that we have the foundation needed for demanding parity in research funding. Of course, the NIH has said the reason the amount is low is a lack of good study applications. However, I spoke to a researcher who did a study in CFS years ago and asked him about doing it again because I noticed he had been researching arthritis since then. He gave me lots of reasons why he wasn’t doing CFS research. One was low NIH budget for CFS research. So we have a catch-22. NIH funding level won’t increase until more good study applications are submitted, but scientists won’t submit it until they see more funding.
Sounds like NIH needs to do an outreach to correct this misperception, of it is in fact the case. One way is to dedicate money through an RFA. I think this has been discussed in CFSAC. And I don’t remember the results. Also, I was told the best place to go for dedicated funding for research is Congress.
A couple of things I will point out: While these are figures for this year, some of these studies. I know this is true of Younger’s and Maryann’s study. Also, there are very few experienced ME/CFS researchers. It is entirely possible some of the ones making applications also sit on the Special Emphasis review panel. So, it’s possible their study application was not reviewed by the panel or was reviewed by others on the panel.
Yes, many if not all of these studies are multi year grants.
CFSAC has recommended RFAs many times, most recently last year. NIH responded to that recommendation with what boiled down to: no, because you don’t have enough data for us to target an RFA.
The NIH say that the reason we don’t get more budget for CFS research is that investigators aren’t applying and/or their requests aren’t high quality. Yet they declined to fund the Columbia Microbiome study which was no doubt high quality and from an institution/investigator with a history of doing excellent research. And all this in an environment where there is substantial money and interest in researching the micro biome. So yeah, catch-22 indeed.
Hi, Tina. Somewhere recently there was a list of congressional committee members in charge of health spending. But because of my non-existent short term memory, I have no idea now where or what that info was save of some importance re: funding and advocacy. And so it goes for us CFSers. True that? Marcie Myers
Thanks for the informative report. My question is, what can we do as an individual to try to encourage greater NIH spending for ME/CFS? Who do we write? Who can we call? Also, on another note, I’ve seen a petition or two for things like removing the FDA roadblock for Ampligen for ME, but almost nobody signs them. There seems to be a problem in getting the word out about them (petitions), despite posting links in the comments section of some websites that advocate for CFS/ME. It rarely drives much activity. What can be done?
Absolutely on the mark.
What’s the next step? What can we, as a community, gather around, so that our limited energy and limited money can make a difference?
I know that there are some advocates working on ways to push NIH for more funding.
In this video, around 22:00, Nancy Klimas gives advocates advice on how to make funding happen (though I am not sure how it would apply to ME/CFS)
Terrific article getting to the core of our problem. Thank you Jennie for putting so much effort into keeping these figures for us and breaking down the grants into an easy-to-read presentation. I couldn’t agree more that we all need to focus on funding, I am willing to do whatever it takes.
One suggestion about your figures – I assume that they are not adjusted for inflation. You may want to throw in a factor for it so that you are comparing apples to apples across years. Usually you would adjust all the historical data and leave the current year the same. Having said that, your point about flat spending year-over-year would still ring true!
I am particularly concerned that “some advocates [are] working on ways to push NIH for more funding”. Will they be asking for funding of research based on SEID? I hope not. The SEID criteria are too broad and there are no exclusionary diagnoses listed. I fear any research using patients diagnosed with SEID will result in mixed cohorts and, thus, research studies that can’t be compared to each other — in other words, more of the same problems mentioned in the IOM report.
Jennie, excellent review! We will, indeed, be having this same conversation 10 years from now if we do not figure out some way to make use of the IOM material (ACT! as Dr. Clayton said). And the IOM report says repeatedly the disease is underfunded. So what’s being planned to try to force the NIH to up their funding levels for ME/SEID significantly? What is happening among those who are “working on ways to push the NIH for more funding”? Are they organizing to open up their efforts for a community-wide push, or what?
I don’t know the plans, Billie. I’ve heard generalities from several corners. What they’re planning and how they’ll do it is unknown to me.
We need to organise a worldwide push for more funding. Do patients advocates have a plan to do it? Without funding we will not move. We need a significant increase in funding – not in 1, 5 or 10 years but now – it´s pity to lose every single day. We need a hard push – a bit aggresive campaign till we will not see increase in funding. We tried all those nice a polite discussions and demanding but it doesnt work. Let´s go to organise ourselfs and push the federal agencies for more funding – there is no other way
I agree that we need a dramatic increase in funding. But I also agree with Liz Willow that we need to ensure that we don’t end up with mixed patient cohorts again.
I don’t think its a choice between either more research funding or diagnostically reliable research criteria. We need both in order to make rapid progress.
Jennie,
Good information to have. Thank You.
I would like to suggest that patients address this dire situation in a slightly different way than asking, yet again, how can we get NIH to fund this disease in a manner commensurate with the severity, breadth and toll of the disease?
I think a question that needs to be addressed is WHY the NIH has never funded this disease, even though as long ago as 1987, NIH hired a woman named Ann Schleuderberg to head up the NIH’s funding program for “chronic fatigue syndrome.” In conversation with her, she would not let me call it a disease, insisting, “We don’t know whether or not it is a disease.” At any rate, I was eager to meet her and follow her activities in helping to fund research so that NIH could find out whether or not it was a disease. Her response to me for the next several years: “We can’t fund any of the submitted studies because the science isn’t there yet.” This continues to be a refrain, though others have been added over the years, all of them illogical. There is so much wrong, so much that is unethical, so much that is broken about the funding, or lack of funding, and all that is wrong and unethical and broken has remained so for three decades.
I urge patients to ask WHY that is. Is there something about this disease that the NIH does not want to become public knowledge? Is there information–scientific information–that the NIH would like to suppress? Is there a reason or reasons that NIH continues to adhere, in spite of tremendous push back from patients and scientists who are turned down for insulting and patently ridiculous reasons, to refuse to fund research?
I suspect that until patients understand the motives to suppress research on this disease, simply demanding that more funding be set aside may be futile. The lack of funding is an obvious and ongoing problem. It’s been addressed, repeatedly, for years, yet nothing changes what may now be called policy inside NIH. Why does this policy exist; who have been the principle people behind this policy over the last 30 years; and what is it that they are afraid the public will find out about this disease if a concerted effort as was applied to AIDS–wherein billions of dollars were spent annually for multiple years–was applied to this “real” disease.
Well said, Hillary. It does seem, not just strange, but quite frankly suspicion ( or begging inquisitiveness) that the NIH would not put real research dollars into a disease that they have been aware of for over 30 years. As a public health agencies, which is funded by US tax dollars coming from US ME/SEID patients citizens (certainly in volume before the diseased patient community became ill) we need to demand our US Representatives force the NIH to fund research on the science behind this disease. With so many patients lives stolen, it doesn’t fly for the NIH to say, this is not a disease and until there is science behind it we won’t fund it. No, time for a paradigm shift. Fund this horrific debilitating disease first, and the the science, biomarkers, and many treatments will come. If the NIH didn’t/doesn’t believe the seriousness or level of disability and lost lives from this debilitating disease. They should have or should -take a modicum of effort and money (and I’m serious) – visit/ed these patients, listened to patients or the clinical experts treating patients. Why would the NIH ignore the clinical research experts grants to study this debilitating disease? These same clinicians/researchers Lipkin, Klimas, etc were all granted money to study West Nile Virus and AIDs. These researchers credibility has already been validated by the NIH. Separately, it does seem that advocate diplomacy has failed at the NIH and other federal agencies. It is also strange that the FDA has acknowledged the severity of this disease. However, the FDA hasn’t approved a rush to market with a safe drug like Ampligen? Moreover, the FDA used a panel of non majority experts to decide if Ampligen should be approved? Ampligen is safe by FDA standards and words. The FDA says this illness is dire, but they wouldn’t approve Ampligen in the exact population that doesn’t have any FDA approved treatment? Instead of getting more science from the approval of Ampligen in studies leading to more discovery of this illness, the FDA sits on it. It’s time for action. This vicious cycle will continue until we as a community do more to force these questions be answered by these agencies through more public awareness.
Hillary one request. I know patients would love to read your book. Is it possible to get your book out on audio due to the mental exertion it takes to read? Let’s not let history keep repeating itself! Thank you.
Yes. Yes. Yes. Nothing will change if NIH doesn’t increase funding for ME?CFS or whatever research on causes, biomarkers and treatments. That’s the bottom line as you explained it.
So, despite the IOM report, HHS’s own committee, and despite Drs. Hornig and Lipkin’s analysis of cytokine involvement, and despite the Stanford and other studies showing brain inflammation, we haven’t moved ahead on the funding for research.
We all have to push this, sufferers, medical professionals, advocates, allies.
Maybe a few lawsuits would shake them up.
If they don’t even listen to the IOM’s recommendations, what would change them?
I’m for action as I and others have said before, but we’re so physically limited.
If Lipkin and Stanford can’t get government funding, what will it take?
Thank you so much, Jennie.
Please let us know as we go along what you think we can all do to push NIH and other funding agencies. Many of us out here trust your judgement!
Thank you for this excellent summary, Jennie! It certainly is sobering to see how, despite all the rhetoric (ie: P2P, IOM etc), we’re not progressing where it counts… in research dollars. For too long this condition has languished, forgotten & neglected by the powers that be. Some good projects have been funded, and it’s heartening to see that funding for psychological research in this area has dropped significantly in the past 2 years. My hope is that, as some of these new findings start appearing (eg: Lipkin’s & Younger’s as two of the most recent) that some momentum will be gained.
Perhaps what is needed in regard to gain more funding is more public pressure. There has been so much coverage recently on IOM and Lipkin/Hornig – if we could get the media interested in the issue of ongoing underfunding of this disease perhaps this might have an impact.
Maybe it’s time for the Count de Monet (Count the Money) to appear at CFSAC and other meetings. (This is legendary Harvey Korman character from Mel Brooks’ History of the World, Part I. Don’t get saucy with me, Bearnaise!)
We do need a concerted campaign aimed at getting government funding. If we
don’t do it, who will? Us, plus advocates, allied and medical personnel.
The IOM did mention the urgent need for more research with funding. If the
HHS and NIH don’t listen to the IOM, we all have to push very hard. Some
email blitzes, letters, calls, etc.
I agree with trying to get more media people interested and involved. David
Tuller wrote a piece in the NY Times Science section. Maybe he could write
more, plus those of us who know of journalists who might be interested
could push on this.
We do need a major campaign for government funding NOW! A strong
one with some slogans and sound bites.
Frankly, I am not very impressed with most of what the NIH is funding or has funded. I really don’t find it helpful to spend money on nonsense that does not move research forward. I would hope that any advocacy effort also focus on the kind of research and specific researchers so any money that is spent doesn’t go down the rathole.
The NIH does not want to spend money on this condition. There may be reasons unknown to us for that. It may be better in the near term to have a few high quality studies funded outside of the NIH than to force them into funding bogus research.
Yes, continue to push for more research funding! That is what will help answer questions about the illness ultimately. Both the IOM and NIH P2P reports bring up lack of research as roadblocks to their being able to answer thoroughly the questions they were assigned.
People should share the following letter, written by NIH’s head, Dr. Francis Collins, last Fall with media, Congressional representatives, etc. The letter is in response to CFSAC’s research working group asking for funding for specific programs — like a biological repository, studies using exertional challenges, etc. (the same things NIH P2P asked for in their draft in December). Collins basically says they don’t want to give any more $$ because not enough is known about ME/CFS, that there aren’t enough researchers, and that there are not specific areas they could fund (although the CFSAC recommendations just outlined that for them as well as the 2011 NIH State of the Knowledge Conference). Saying that they won’t fund something because not enough is known is a stupid/ nonrational reason; you fund things that are unknown so you can find out more about them!
Recommendations:http://www.hhs.gov/advcomcfs/recommendations/06142014.html
Collins response: http://www.hhs.gov/advcomcfs/recommendations/hhs-cfsac-recommendations-response.pdf
Also note that 4 NIH Institutes withdrew their support of research for unclear reasons last October: http://grants.nih.gov/grants/guide/pa-files/PAR-12-032.html
“Update: The following Institutes/Centers are withdrawing their participation from this FOA per NOT-OD-15-006, effective October 25, 2014:
National Institute on Aging (NIA)
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
National Institute of Environmental Health Sciences (NIEHS)
National Institute of Nursing Research (NINR)
National Center for Complementary and Alternative Medicine (NCCAM)
Office of Dietary Supplements (ODS)”
We should find out why they withdrew. Doesn’t makes sense. Since many researchers believe the illness can be triggered by environmental factors, why did NIEHS withdraw? The Chang study showed that elderly patients are at higher risk of cancer so why did NIA withdraw? Etc….
Dear Ms. Spotila,
I can’t speak highly enough of the quality of this article. Cudos to you. I have one question as regards a paragraph: “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.”
Would it be possible to ascertain if the CFS Special Emphasis Panel actually sees each study PRIOR to funding and, if they do, apply pressure to this panel to increase NIH funded studies? Or perhaps find that more heavily funded different study section to apply toward. Thank you. Marcie Myers
The CFS SEP convenes a few times a year to review ME/CFS grant applications. They score the applications. Then each Institute sets a “pay line” which establishes the range of scores that will be considered for funding. The final funding decision is made by NIH based on the pay line score and other factors. There’s no way to pressure the CFS SEP itself because each meeting has a different membership, and the names are not released in advance. I hope this helps. Let me know if I did not answer your question.
Most excellently. Bummer, though. Marcie
http://www.thepetitionsite.com/490/782/145/more-nih-funding-for-mecfs-research/
etition for funding.
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