Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research.
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 spent more than $5.6 million for ME/CFS research in 2013, an increase of 25.7% over 2012. And for the first time ever, I think the numbers look better on closer examination.
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.
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 17 grants listed for 2013 spending (one grant is listed twice because funding came from two institutes) for a total of $5,638,797. This is an increase of $1,153,253, or 25.7% 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 $5,638,797. Let’s see the category breakdown:
- Only one study investigated psychological treatments. Dr. Michael Antoni received $533,004 for his study of telephone based patient-partner cognitive behavioral stress management.
- Two grants examine orthostatic intolerance to some degree. First, Dr. Dikoma Shungu received $199,152 for a treatment study of an amino acid and its impact on oxidative stress. Second, Dr. Leonard Jason received $400,540 for his new grant to study ME/CFS prevalence among young people, and examine whether orthostatic intolerance is related to neurocognitive function.
- Two grants awarded last year to study the microbiome and ME/CFS continue. Dr. Maureen Hanson received $182,125, and Dr. Mary Ann Fletcher received $170,724.
- Five grants continued from 2012 investigate aspects of pathogenesis or neuroendocrine immune mechanisms, totaling $1,519,142. Dr. Theoharis Theoharides and Dr. Vincent Lombardi will conclude their grants in 2014. Dr. Nancy Klimas and Dr. Roland Staud are in the middle of multi-year grants, and Dr. Leorey Saligan has no start or end date listed on his internal NIH grant.
- Several grants, four of them new in 2013, are specifically designed to identify biomarkers differentiating ME/CFS patients from other disease groups. Dr. Dikoma Shungu has a new award for $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. Dr. Kathleen Light and Dr. Mary Ann Fletcher will be continuing their biomarker work, although both grants wrap up this year. Dr. Jim Baraniuk received $335,300 for a new exercise and imaging study to test whether results from a GWI study apply to ME/CFS patients. Dr. Luis Nacul received $539,274 for a new longitudinal study of immunological and virological markers. Finally, Dr. Fabien Campagne of Weill Medical College received $528,745 in new funding to develop gene expression profiles as possible diagnostic biomarkers.
When compared to previous years, the numbers look even better:
| 2011 | 2012 | 2013 | |
|---|---|---|---|
| Total spending | $6,346,148 | $4,485,544 | $5,638,797 |
| Not CFS Related | 0 | 1.7% | 1.4% |
| XMRV | 27.5% | 16.5% | 0 |
| Psychological | 13.5% | 19.7% | 9.5% |
| Orthostatic intolerance | 13.5% | 7% | 19.5% |
| Neuroendocrine Immune | 45.5% | 55.1% | 69.6% |
(To see the analysis going back to 2008, click here.)
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 five new grants in 2013 totaling $2,302,859, or 41.4% of the overall total. This is an increase of $1.5 million over 2012’s new grant spending. All five 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 | $4,602,372 | $353,837 | 8.3% |
| 2012 | $3,663,430 | ($938,942) | (20.4%) |
| 2013 | $5,561,597 | $1,898,167 | 51.8% |
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 very 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 much 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 50% (or more) increases for the next five years.
GREAT WORK!!!
Thank you!
The 2014 budget for ME/CFS is barely a blip on the chart–may hit $5M–may not–and $1M + goes to IoM and P2P. This is abysmal and grossly negligent. Applause for 2013 funding–NO!
I completely agree that the budget is inadequate – I called it “pocket lint” in one of my testimonies at a CFSAC meeting. It’s barely noticeable in terms of research dollars. One clarification: the $1 million for the IOM budget is not supposed to come out of this pot of money, and neither is P2P. Will 2014 funding stay the same or increase over 2013 – I desperately hope so.
I am not as positive as you are about the 2013 NIH budget for CFS research because:
(1) The studies funded by NIH are for the study of “CFS” which may mean anything from idiopathic fatigue to severe M.E. and (2) As Ess said, the projected budget for CFS research for 2014 is abysmal. Did you see the chart Blue Ribbon Documentary posted on their facebook page? If not, it’s at: https://www.facebook.com/CFSDocumentary
“On a per-patient basis, ME/CFS is dead last on the NIH roster.”
–Andy Kogelnik, MD, PhD, on the nationally syndicated Jim Bohannon radio show.
NIH’s funding estimates by disease for FY 2014.
I think that graphic is great! Projected 2014 spending on ME/CFS is $5 million, same as 2013 projections. I sincerely hope we go higher than 2013, and if not I will continue to hammer NIH as I have in the past. While I applaud this increase over 2012, we need to start moving the decimal to the right if we are going to make any meaningful progress.
I also agree that NIH funding could include non-ME or non-ME/CFS patients. The inclusion criteria are not available for each study, so it’s hard to tell exactly how patients are being selected.
Thanks for looking into this. One question though. You stated that “Last year, I found that 18% of the money NIH said it spent on ME/CFS was incorrectly categorized.” But in the first table which breaks down spending by year, under [Not CFS Related] for 2012 is it only 1.77%. Is that a decimal place typo or am I misinterpreting something?
Ah, thank you for this. It’s late, so I had to stare at it for awhile to figure out what I did! *rolls eyes*
The 18% unrelated figure for 2012 combines the Hayes grant and the XMRV grants. But in the table, I broke out the Hayes grant separate from XMRV because I wanted to check the XMRV trend over time. I’m sorry about any confusion!
Cort Johnson reported via twitter that “Lipkin got fecal samples, would like to do throat samples, PBMC’s – reviews of his grant proposal to do gut work on ME/CFS were horrendous though, very difficult to get funding, one reviewer of his grant proposal referred to ‘psychogenic illness’ in ME/CFS”.
Absolutely and completely and atrociously ridiculous and inappropriate.
Thank you Jennie!
The combination of your provocative and well-researched writing, combined with important and thoughtful comments from readers below, paints a picture of 2 core facts:
a) ABYSMAL funding for a disease as prevalent and devastating as M.E.
b) An ENCOURAGING DOWNWARD TREND in the proportion of psych studies funded by NIH, as a % of total ME/CFS spending
The comments on diagnostic criteria used for these studies likely merit an article or at least a table unto themselves. I’d love to see a breakdown of what % of studies use the ICC or CCC (or at the very least, PENE/PEM or NK cell dysfunction as inclusion criteira). THAT’s a trend I’d love to see as one of the proxies for progress, and maybe it bears illuminating for the powers that be.
In other words, maybe advocates and credible biomedical researchers can more aggressively DRIVE the research funding agenda by pointing out to NIH funders what kind of research we’re looking for, and what the criteria for success are:
a) Funding for BIOMEDICAL studies
b) Research on well-defined cohorts which at the very least REQUIRE PEM/PENE.
c) Etc…
I agree that it would very helpful to track the case definitions being used, and whether PEM is required (and how it is assessed). Unfortunately, the selection criteria are not generally included in the abstracts available on NIH’s website. There are also restrictions in how widely a protocol can be shared prior to a study. The only way to really track this is to look at the published papers, but that means great delay – possibly years.
You have looked into NIH spending and that took time, Jennifer, which I appreciate. Nonetheless, I am not impressed with what I see.
If you’re not impressed with the NIH funding, neither am I!!!! If you’re not impressed with my post, I will try to do better next time.
Thanks for mentioning the microbiome study by Dr Lipkin, Jennie – there’a huge crowdfunding effort to get it funded, with a campaign website here:
http://www.microbediscovery.org/
I hope everyone will donate and spread the word.
The reason that’s necessary is that the NIH wouldn’t fund an ME/CFS study even by Dr. Lipkin – the world’s top virus-hunter, the man who helped contain the SARS outbreak in China and was just awarded the Mendel Medal (the kind of award that Nobel-Laureates get). It makes the claims we’ve heard from the NIH that they just don’t get enough high quality proposals to make it worth increasing the budget look like the hollow sham it is. Our scientists have been saying for years that they can get NIH grants for their work in other diseases but not ME/CFS – and here’s further proof of that double-standard.
Although you’re showing a hopeful trend, it’s a hopeful trend within a shred of pocket-lint, as you say. ME/CFS has for years got roughly $5m a year vs MS’s $115m:
http://report.nih.gov/categorical_spending.aspx
ME/CFS affects twice as many people as MS and has a similar disability profile so that works out at roughly $5 per patient, compared to MS’s $287.
This is an outrage. My hope for the Lipkin microbiome study is that donations from patients and supporters will rack up quickly and the profile of Dr. Lipkin will help pull in national media coverage shaming the NIH. I want to see the profile of ME/CFS as a serious, disabling disease raised particularly in the US, and for public pressure to be put on the NIH through this fundraising campaign.
Maria Gjerpe said that her main achievement in the Rituximab trial wasn’t the money raised but the sea-change in Norway in how the disease was perceived. She achieved repeated, positive national media coverage through her fundraising campaign and in the end, the Norwegian government was shamed into fully funding that trial.
We’re already seeing NIH-shaming media coverage off the back of the Lipkin study. This excellent article by David Tuller has had 48,000 views:
http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome-research
I hope people will support this study with donations and, importantly, spread the word. There’s lots of help about how to fundraise and to get the word out on the campaign website:
http://www.microbediscovery.org/
Thanks, Jennie!
Sorry, Jennie, I disagree strongly with you on this. I cannot give a bit of credit to the NIH for a 13% increase in funding on such a small base. They had given $6 million in 2011! Compared with many diseases, disorders, etc., it is an OUTRAGE that CFS gets so little. As you point out, we have actually dropped from 224th on the list to 226th!!! Compare CFS funding, not to past years but to other diseases. The HHS crowd will read your blog and be proud of themselves. Here’s the full NIH funding list for diseases. People will be staying sick for a long, long time with this level of federal funding which is causing the community to go begging for private funds. That is fine, but the NIH needs to DEVOTE VASTLY MORE MONEY TO ME/CFS.
The link does not seem to actually link; I think it will need to be keyed in.
http://report.nih.gov/categorical_spending.aspx
Billie, I don’t think we actually disagree. It is an outrage that ME/CFS gets so little, and I’m surprised that you think my position is otherwise.
An increase is better than a decrease. Nowhere in this post do I suggest that the increase is sufficient.
Furthermore, I have absolutely hammered NIH for the dismal funding, including last year when I was the only advocate to report that 2012 funding was substantially lower than 2011 funding: http://occupyme.net/2013/05/22/cfsac-testimony-may-2013/
Finally, if HHS was reading this blog and taking what I say seriously, I think their actions might be a bit different. They pat themselves on the back just fine, and I don’t write this blog for them. I write it for patients and advocates so that we can all speak based on facts and evidence. The fact is the numbers were up in 2013, and the fact is that it is not enough – not until we start moving the decimal point to the right.
I see that when submitted, the link does show as a blue (real) link.
Billie
Thanks for reporting this, Jennie. “Pocket lint” is a brilliant description.
Jennie, you wrote, “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.”
I asked a bit about this on PR, and Sasha kindly directed me to your “No Facts for YOU!” (6 June 2013) entry, describing the secrecy surrounding CFS Special Emphasis Panels.
You also added a note later though that the May 2013 CFS SEP roster was available. (I followed the link, but wasn’t able to find the info – but I believe this is bc I don’t understand what additional info is needed to properly search.)
If you know off the top of your head – Is there just one, or more than one CFS SEP each year? Is there a regular cycle? Is the May 2013 roster the only one revealed in the past 10 years, since – to my understanding – you’ve thus far been denied most all of this info via FOIA?
Any further ideas on how to attain transparency? Sorry for twenty questions!
As always, THANK YOU for all you do and share. (You must have the patience of a saint!)
I am actually hip deep in SEP rosters right now, working on a long-term analysis. I hope to finish it by the end of the month(ish), so I’ll be able to give more details soon.
But I can answer a few of your questions. First, the May 2013 SEP roster is no longer publicly available. NIH has taken down all the CFS SEP rosters, and you have to file a FOIA to get them. However, I’ve got them now and that’s what I’m analyzing.
The SEP meetings three times per year, and from what I have heard, they are currently reviewing 6 to 8 applications per cycle. That means that NIH gets 18 to 24 applications for ME/CFS research per year, which is abysmal.
In terms of more transparency, I do have some thoughts about it but it will require some form of legal action. I just have not had the time to go down that path, but if someone wants to help me with that then please get in touch! I also have a couple related FOIAs still pending, so the story doesn’t end with the SEP rosters themselves.
Of course I am happy that there was not only increase in funding but better targeted funding. However it’s peanuts.
After I read your blog I turned to the news and read that the NIH had just granted twenty three million dollars to a phase III study of a calcium blocker already on the market to be re-purposed for Parkinson’s disease. I am very happy for Parkinson’s patients but it really stings that we do not get those kind of funds when 25% of all ME/CFS patients are severely ill,either being entirely homebound or bedbound. Who knows how many are out there dragging and draining every cell of their body to jobs which will lead them to sink further into the nightmare that ME/CFS is.
As I watch the increasing interest in this disease however I do feel that the next couple of years are going to be our years. Things are indeed improving. I’m sure we all just wish someone would place us at the front of the money line after so long being the welfare child at the rear of the line.
Nice work Jennie. Thank you for all that you do.
I am very glad to see this report and appreciate it greatly. However, when I looked at the NIH website site, for the budget for medical research grants, which totals $30.1 billion, by the way, I only saw $5 million allocated for CFS for 2014 and 2015 (estimate). There are a few other diseases, by the way, which affect only women and mainly women, which are allocated around the same amount or even less. These are diseases, which the agency does not see as major health problems.
I absolutely do not begrudge any diseases getting more funding. People die of cancer, HIV/AIDS and even multiple sclerosis. In my younger days, I knew someone who got MS (he was 27) and died a year later.
What I see and object to is that $648 billion is allocated to the military and $251 billion is allocated to pay banks’ interest. $10.54 million is spent every HOUR on war. So, instead of
money for destruction, I propose that funds be shifted from the war chest to be spent on medical research and treatment for CFS and all diseases — for life!
Jennie,
I just wanted to say thanks for the difficult work you are doing, documenting the NIH’s treatment of ME/CFS research at this point in time.
I hope that I am wrong but I have little faith in any of our Gov’t (or advocacy groups closely associated with the Gov’t) when it comes to taking the lead and driving change (through research or otherwise).
My faith lies entirely in efforts such as those by the Hutchins Foundation, Drs. Lipkin and Montoya as well as the work by the Norwegians and Brits (Invest in ME, UCL) studying Rituximab. The scenario I see playing out is one of these other groups prevailing against prejudice and gross indifference to identify a bio marker, treatment or mechanism of disease.
Only after a major breakthrough do I expect to see the NIH put forth any real effort and at that point I expect that their focus will likely still be on damage control for the NIH and not on the patients.
I wish I could have a less jaded view of things but I’ve been at this far too long and I’ve seen far too much to think otherwise.
Regardless, you are carefully creating an indispensable record and I sincerely hope that you are right, that facts and unrelenting pressure will force those who are supposed to be our allies to set self perpetuation and self interest aside long enough to actually put patient needs front and center.
Best wishes,
Shane
Jennie you said “The SEP meetings three times per year, and from what I have heard, they are currently reviewing 6 to 8 applications per cycle. That means that NIH gets 18 to 24 applications for ME/CFS research per year, which is abysmal.”
We are having this problem because
1) researchers have been told it would be a career suicide to research ME
2) well known physicians don’t even bother with time consuming grant applications of they are to be refused down the line due to various reasons, stigma, corruption and biased grant reviewers.
Here in Canada we are facing the same problem, but the Canadian government is looking up to the CDC as whether we have an epidemic or what should be done. We are turning in circles.
Thank you for your hard work.
Yes, I think there are multiple reasons why there are so few grants being submitted, including the two you mentioned. Lack of clarity on case definition and the garbage bag cohorts produced by Fukuda are also contributing factors. We need a clean cohort that researchers can really dig their teeth into. We also need, as Shane noted, a clear target, such as a biomarker or pathogen or disease process (like autoimmunity) that researchers can use to orient their work. Another piece is data infrastructure, especially needed because the biobanks are all pretty small and somewhat disconnected. No single thing will fix the problem, but changing nothing will only guarantee that the problem isn’t fixed.
On biomarkers, there are some, aren’t there? The Lights found differences in gene expression after exercise. Dr. Komaroff has found some differences, too. In New Jersey, I think, Dr. Nadelson found differences in spinal fluid between healthy people and CFS sufferers.
And there are more biomarkers, aren’t there?
Thank you for your work in doing this analysis. I tried to do it a few years ago so I know how difficult it is to sort through the convoluted records on the NIH website. You’ve done a great job and given us important information. Thanks!
It’s abysmal, but it’s an improvement. When spending on this disease is so low it’s hard to be happy that they are only siphoning off 1.5% on unrelated studies, but that’s much better than years past.
I have mixed feelings. I’m happy that the trend is slowly inching in the right direction, but I’m also tired of being grateful for crumbs.