(Thanks to our ace advocate Jennie Spotila for allowing Health Rising to post her blog on NIH spending. With it’s 30 billion plus budget the NIH is easily the biggest single medical research funder in the world. Β
The good news is that from the Younger biomarker to the Patrick exercise to the Katz infectious mononucleosis study, there are some great grants here. The NIH is moving in the right direction – they’re funding good researchers doing innovative work. Β Β
When the NIH funds studies it usually funds very, very good ones. If you want to do a complex, multi-million dollar study, the NIH is the place to go. That’s why in many waysΒ NIH is the prize and why it’s so important that we do well there.Β
The bad news is that if the NIH is funding really good studies they’re not funding enough of them: we’re still at about $5 million dollar a year and that’s basically peanuts in the medical research world. Check out Jennie’s annual NIH review below and sign up for her blog here if you want to keep up with advocacy issues. Cort )
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 $5,384,373, 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, βburden of illnessβ 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 $265,652 over 2013, or 5.2%.Β 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 βfunding is scarceβ excuse.
Category Breakdown
For the first time since 2011, there are no grants included in NIHβs 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.
- 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 Petersonβs practice, looking for genetic and immune links to CFS, autoimmune disease and Non-Hodgkinβs 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 | $4,518,182 | $5,118,721 | $5,384,373 |
| Not CFS Related | 1.77% | 1.5% | 0 |
| XMRV | 16.43% | 0 | 0 |
| Psychological | 20.14% | 10.4% | 10.36% |
| Orthostatic intolerance | 7.01% | 11.7% | 16.5% |
| Neuroendocrine Immune | 54.65% | 76.4% | 73.14% |
(To see the analysis going back to 2009, 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 $2,423,798. Thatβs 45% of the total amount. Itβs 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 itβs 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 | $5,009,672 | $761,137 | 18% |
| 2012 | $3,696,068 | ($1,313,604) | (26.2%) |
| 2013 | $5,041,521 | $1,345,453 | 36.4% |
| 2014 | $5,384,373 | $265,652 | 5.2% |
As I said, our funding level basically stayed flat from 2013 to 2014, with both years rounding down to $5 million. Sure, a 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.
The outlier in that table is 2013, which showed a 36% increase over 2012. But that was only because 2012 was such a lousy year with a drop of 26%. If you take 2012 out, the increase from 2011 to 2013 was only $32,000 β basically flat.
And thatβs the real metric here. Our research funding has been between $4 and $5 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 donβt 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.
This is so spot on, if we don’t get/demand funding, we will never see any improvement. It’s time for this devastating illness to get the appropriate funding. How though. We need some social media to go viral for us. To be that far down on the list is embarrassing, for them. How could they do that with a straight face? We need to start a nation wide hunger strike, we would just need one person from each state to get the media, and its never been done, we could be the first to demand change with that kind of movement.
Thanks Cort as always.
It is embarrassing. It’s kind of unreal…as least to us!
Thanks to Jennie – she’s been doing this vital review for quite awhile. We need someone who’s watching and measuring – and that’s what Jennie’s doing.
Yeah, I’m all for that.
Drastic times call for drastic measures.
Jennie Spotila does some fantastic research of projects to help us understand more effectively what’s really happening.
Thanks John! That is my goal.
Cort. since CFS was labeled and acknowledged by the CDC and NIH over thirty years ago and perhaps at least fifty million dollars have been spent on research all over the world until now and we don’t know enough to even give this disease a proper name!!
Medical research must waste over half of what it is given? Fifty million…thirty years????
NO NAME!!! Cort, how much does it take? A Billion? Two?
What has medical research achieved the past 150 years……….chemo…….radiation, or the knife! What has been cured???
π
Mary Dimmock has charted this – it’s over $125 million dollars – from the NIH alone…that’s why we need to do a system reset – as the AHRQ report suggested and devise an organized strategy to work on ME/CFS and do it methodically and do it right.
Ron Davis of the End ME/CFS project is proposing just that. He’s not promising breakthroughs overnight but he is promising an approach where we can tell what is real is what is not.
That should come as music to the NIH’s ears…
We need some grand gesture that will get national media attention, like a march in Wahington DC.How will these politicians feel if a big crowd of us were up there with wheelchairs and bed cots to lie down on, then at some point we all rise up at once and go down on our knees and beg and plead for help. As patients we are too invisible. To those folks we are just numbers on a page, not people whose lives have been utterly destroyed by this disease, After we beg on our hands and knees, each of us could go up to a microphone and state our name, age, number of years we have suffered with MECFSSEID, or how long we have been on disability, what our lives were like before illness, and compare that to what our lives are like now. Maybe we could hire a publicist to make sure it gets media coverage. The presidential elections are coming up.Could we turn this into a campaign issue? Desperate times call for desperate measures.
P
tients we are too invisible
The reason there has not been a march on Washington is because we are not physically able to, or it would already have happened. That why I suggested the hunger strike. We have to get real about what we can do, and then follow through on what is decided. I agree we need a healthy spokesperson to organize, and promote media. People have been saying we need to ACT UP, for a long time, a nation wide hunger strike is about all we can do, and a profound statement.
I’m from Oklahoma, and I’m willing.
Water, and medications only doesn’t sound fun, but 10+ years of this has been devastating. I don’t know if I can do this for another 10+ years. CAN YOU?
Hi, Walking Dead,
No, I don’t think I could stand another 10 years either.
A hunger strike is beautiful gesture, but speaking just for myself, I would not be able to do that for very long and I would be very ill. It would be better for me to feel as well as I can, so that I survive to fight another day.
You need to subtract 4% for inflation (U.S.). So it’s a 1% increase
I sent this to my Congressional Representative and both Senators. While on Whitehouse.gov I saw there is a way to start a white house petition. Does anyone think that would be helpful. Do we have an advisory board of patients talking directly with HHS?
We need an agressive visible campaign – with nice ones we got nowhere. We are not able to demonstrate so the only thing we can do is internet/email/phone campaign. We did it already before but we were not so good organised and we alwayes finished too early just after some cheap promises. So I would be for such a campaign to email/ call/ fax federal agencies from all over the world. LetΒ΄s prepare campaign lettres, organise ourself worldwide (patients organisations, patients, advocates, friends and families, journalists) and then letΒ΄s start to do daily campaign till we will not see significant results.
Do our advocates prepare anything? We dont hear about anything.
the question is how? Because if the breakthrough Is going to happen it’ll be from the US- certainly not from here in the uk That’s why what happens in the us is so important and the iom report has had big coverage internationallyt
Hey y’all,
I was diagnosed with CFS at age nine. I was a competitive gymnast and happy, then I got the “flu”and just like that, it was all over. (I’m 30 now, living with parents and not working) My mom also has CFS, and it angers us both watching what the other goes through. We joke about having a “Race for the Cure” because I think only half of us would show up while the other half would collapse before the end π I think I have a better idea.
Ive been writing about my weird sick life at 25pillsaday.com for four years. The blog did go viral once (for something funny I wrote, unrelated to CFS) but it got the attention of a lot of people, including some literary agents and I am now working on a humorous memoir about life with cfs. Don’t worry, it’s awesome. I am wondering now about starting a change.org or kickstarter campaign that would ask, no, demand more funds from these institutions, highlighting not just the livelihood stolen from millions of people, but also the lost productivity and the billions of dollars down the drain annually (money talks, so they say) All of this can change, but the only hope for a cure is research. That requires being taken a little more seriously than TMJ and male pattern baldness. The nice part about these campaigns is that they gain momentum online and require only email signatures, nothing physical. I agree with y’all, we do need something drastic and loud, and I would eat my own hair if it meant more money for the cause. But the truth is most of us are too sick to march or fast, so let’s use the voice we have and let the momentum and reach of the Internet work in our favor. I could post the campaign on my blog, which will then be put on Facebook and Twitter. I could Send to a ton of other awesome blogs out there (starting with this one) where more and more people could sign. Even if the campaign doesn’t hit its goal, it will make the rounds and get the righg kind of attention. And if it “fails” I’ll start a new one. I’ve got the time π What do yall think? Im trying to asses people’s response before I start because the campaigns have time constraints, so if I could get people on board before I begin, we can hit the ground running once it goes into action and the more likely it will succeeds. I really think this could work for us.
Sign me up, I’m able to click some buttons on my kindle! π That’s about all I can do some days, but the masses need to know what is and is not happening. Research money is so very important for us, and we are always way too close to the bottom of the barrel. Good idea Mary.
Hey y’all,
I was diagnosed with CFS at age nine. I was a competitive gymnast and happy, then I got the “flu”and just like that, it was all over. Im 30 now, living at home and unable to work. I’ve been writing about my funny sick life at 25pillsaday.com. It went viral once and now I have a decent platform of readers.. And that had me thinking..
I laught at the idea of a “Race for the Cure” because I think only half of us would show up while the other half would collapse before the end π I am wondering now about starting a change.org or kickstarter campaign that would ask, no, demand more funds from these institutions, highlighting not just the livelihood stolen from millions of people, but also the lost productivity and the billions of dollars down the drain annually (money talks, so they say) All of this can change, but the only hope for a cure is research. That requires being taken a little more seriously than TMJ and male pattern baldness. The nice part about these campaigns is that they gain momentum online and require only email signatures, nothing physical. I agree with y’all, we do need something drastic and loud, and I would eat my own hair if it meant more money for the cause. But the truth is most of us are too sick to march or fast, so let’s use the voice we have and let the momentum and reach of the Internet work in our favor. I could post the campaign on my blog, which will then be put on Facebook and Twitter. I could Send to a ton of other awesome blogs out there (starting with this one) where more and more people could sign. Even if the campaign doesn’t hit its goal, it will make the rounds and get the right kind of attention. And if it “fails” I’ll start a new one. I’ve got the time π What do yall think?
Mary I am all for anything you can do, and will help however I can. Do we need some sort of directory with all of our names emails on it so that every time you send out emails ect. you will have 1000 or more names, and emails behind you? I just think its got to be a constant thorn in the side of NIH, FDA, and CDC.
Sign me up, I’m able to click some buttons on my kindle! π That’s about all I can do some days, but the masses need to know what is and is not happening. Research money is so very important for us, and we are always way too close to the bottom of the barrel. Good idea Mary.
Mary, sign me up, I’m able to click some buttons on my kindle! π That’s about all I can do some days, but the masses need to know what is and is not happening. Research money is so very important for us, and we are always way too close to the bottom of the barrel. Good idea Mary.
Please sign this petition. Unlike most petitions for ME/CFS, this one hit the nail right on the head with it’s demands for more funding. It also has slightly more momentum than many other petitions I’ve seen. Just take a quick look – it’s short and to the point.
or
http://www.thepetitionsite.com/490/782/145/more-nih-funding-for-mecfs-research/