The NIH Research Center applications are in. The NIH is surely looking closely at how the chronic fatigue syndrome (ME/CFS) research community responds. After all, they haven’t responded very well over time. A Freedom of Information Act (FOIA) request indicated that the NIH receives few – really incredibly few – applications from ME/CFS researchers every year. (A blog on this is coming up). That surely didn’t inspire the uber competitive NIH to lay out a lot of money for research centers.
In fact, the NIH is probably asking itself whether the ME/CFS field is ready to produce effective research centers, and the funding probably reflects that concern. These are small Centers and there are not many of them in a field with so many needs. The research centers are a big opportunity and a big test for the ME/CFS research community. Is it up to the task?
Ten research center applications appear to be a good start to a better future.
A Freedom of Information Act (FOIA) request suggested that it just might be. We don’t know how effective the research grant proposals the NIH received are, but the numbers were encouraging. The NIH received no less than 10 grant applications.
That’s more than expected, and indicates that some research groups outside the ME/CFS research mainstream or groups we didn’t expect to submit – did. Given the considerable time and effort it took to apply to become an NIH research center – ten applications is good news indeed.
Vicky Whittemore, the NIH liaison to ME/CFS and leader of the year-long effort to produce the research centers, said the Working Group that oversees ME/CFS research was pleased:
The Trans-NIH ME/CFS Working Group is pleased with the response to the ME/CFS RFA, which demonstrates an increasing interest in ME/CFS research from the research community.
Each application contains a major group and it’s collaborators. The grapevine suggests the identities of eight of the applicants and some of their collaborators appear to be:
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- The Center for Enervating Neuroimmune Disease (Cornell) – Maureen Hanson + Dikomo Shungu + Sue Levine + the Workwell Foundation + Betsy Keller and ?
- The Center for Infection and Immunity – Ian Lipkin (+ Simmaron?) + ?
- The Genome Technology Center at Stanford – Ron Davis + Bob Naviaux + the Bateman-Horne Center
- Institute For Neuroimmune Medicine – Klimas, Broderick, Crawford, Rey and Vera + Shungu + ?
- Lenny Jason at DePaul University + the Ben Katz + ?
- The Nevada Center for Biomedical Research – Vincent Lombardi + De Meirleir + (probably Arizona State University)
- Pain and Fatigue Study Center – Benjamin Natelson + Dane Cook + Jarred Younger (or is Cook the principal?)
- Stanford Chronic Fatigue Initiative – Jose Montoya + Emory University + Jarred Younger
- The Jackson Laboratory (Connecticut) – Derya Unutmaz and the Bateman Horne Center – (added 6/5)
- Beth Isreal Deaconness Medical Center – Associated with Harvard Medical School – a multidisciplinary team headed up by Dr. Janet Mullington, a Ph.D. sleep researcher, all of whom are new to ME/CFS, is he final applicant. Mulligan found out about the application from Dr. Koroshetz.
NIH ME/CFS Research Center Poll
Please pick your top three
Time Line
(1) First Review – a panel of non-government experts will review each application for scientific and technical merit. This is expected to occur in late July/August. Who the all important reviewers for the applications are will be posted 30 days prior to the beginning of the review.
Collaboration is required!
(2) Second Review – The Advisory Councils of each appropriate NIH Institute will review the applications for their relevance to the Institute’s goals and objectives in September. The winners will presumably be announced shortly afterwards.
(3) Funding provided – Vicky Whittemore hopes that funding will be provided to the grant winners as soon as possible after the Advisory Council meetings.
Early Winners – one early winner so far is the Solve ME/CFS Initiative (SMCI) which was asked to partner on so many of the applications that it will certainly be associated with one or more research centers. Another likely winner is the Bateman-Horne Center which was “a major clinical presence in the applications” and is partnered with Ron Davis, Derya Unutmaz, Ian Lipkin and Nancy Klimas.
Lots of Work
The three NIH research centers will have a lot to do and not a lot of money to do it with. They will be tasked with:
- Collaboration Emphasized – the centers are expected to bring in outside researchers and collaborate with each other. Unfortunately, they are also expected to pay the indirect costs for the institutions the researchers are associated with. Since those costs are about 40% of the researchers’ funding – they have the potential to put a big bite into research centers funds.
- Broad Sway – The Centers are given broad sway to come up with research proposals which inform “the etiology, pathogenesis and/or treatment of ME/CFS”.
- Longitudinal studies of individuals with ME/CFS in their own center and with other centers are expected; i.e. expect studies that follow patients over considerable periods of time in order to capture the heterogeneity and the core elements of ME/CFS.
- Information Portals – The Centers are expected to provide access to information on ME/CFS to researchers, academia and practicing doctors, healthcare professionals, patients, and the lay public (!).
Some other features of the Centers:
- The leader of each Center is expected to have “proven experience in the stewardship of large-scale research programs.”
- Clinical trials are not part of the research centers; however, each Center is expected to lay the groundwork for a treatment trial.
- All the data the research centers generate will be housed at a single Data Management and Coordinating Center (DMCC).
- Each Center will have to engage in at least one collaborative project with the other Centers. That will probably divert attention from what each Center considers their core mission, but it will create a large and hopefully illuminating study.
- Each Center will be required to propose two to three research projects.
- The administrative and reporting requirements are going to be weighty. One applicant expressed amazement at reporting requirements he/she felt were (a) much better suited to a larger center and would (b) chew up a lot of time and money. (Francis Collins recently agreed in testimony that these requirements in general should probably be relaxed).
The Research Centers are certainly a major step up but they’re hardly the cat’s meow. Each will have to spend money on a collaborative project that none might have chosen to do on their own. They will have to pay a steep price in the form of indirect costs for collaborating with outside researchers, and have to do quite a bit of reporting as well.
Expect 2 or 3 major research projects to come out of each ME/CFS Center.
Each Center will start off with $1.2 million and perhaps have from $500 to $800K (???) a year to devote to their own specific research projects. That’s enough to pay for two or three large, complex studies a year per center. Plus a center-wide collaborative study will get done as well.
That offer was enticing enough for ten groups to apply. Hopefully, Ron Davis is right that the three centers are just a start and the NIH will build on them – giving each more money over time – and adding new centers to the fold. Time will tell!
Alert!
The identity of the 9th applicant is known. Derya Unutmaz of the Jackson Laboratory in Connecticut is the principal investigator and he’s teaming up with the Bateman-Horne Center. Unutmaz is the just the kind of researcher we hoped this grant opportunity would attract. He’s well established, works at a hot lab and has a background in ME/CFS as well.
He wrote:
The last missing group is from Jackson Genomic Medicine, I am the PI and as you would expect it’s in close collaboration with Bateman Horne center. I think we put together an outstanding team of experts on microbiome, immunology, metabolism, clinical, computational and bioinformatics analysis -that has the possibility of creating something transformative.
Actually, I would say this is one of the most exciting grants and teams I had the fortune to assemble, despite the arduous process of putting it together.
One more application to go. Who is the missing group?
This is very exciting news
Maybe they can fund them all?? We need all the help we can get!
We certainly do…I think the NIH will get good applications and be encouraged by them – and hopefully will increase funding at some point.
Hi Court,
Just wondering if you know the total sum of the grant money allotted? I think I read 20 mil. that will be distributed over 5 years. This is awesome news and has been a long time coming.
I am a patient of the BatemanHorn Center and we’d be in great shape with Dr. B and researcher Suzanne Vernon! Both are brilliant! Ron Davis and his team at Stanford also would be excellent!
Thank you for the great job, hard work and dedication you do!
Thanks…I believe it is about $4 million a year for the life of the grant. Glad to hear about Bateman Horne Center 🙂
Don’t understand the result of “pick your top 3”. The % doesn’t add up to 100%. What are those numbers on the right end of each horizontal bar, the number of voters?
Not everyone picks the same 3 research groups. So 88% of respondents chose Ron Davis’s group, 42% chose Maureen Hanson’s group, etc.
Hard to pick….bless them all!
Best to contact L. Jason and Dane cook to find more details on their proposals. We have never had a center in the midwest to include WI, MN, MI, IA, IL, IN, OH + more. If we know that Dr. Cook is the PI, then we know he, as well as others involved with the center will be looking at functional MRI and???? Dr. Cook is progressive in his thinking about how to solidify researchers to move forward as a force, not as individuals. Dr. Jason…. what is he adding to his research? Marcia and Mark Zinn are looking at cognitive problems using computerized EEG, but the technology is much different than it was years ago. WE NEED to know why the brain shuts down. Also, Is there a pediatric level for any of these centers? WE NEED PEDIATRIC research. A whole demographic cannot be excluded. SO the point is that the survey is name recognition only. Isn’t it awful that we have to choose from ALL of these wonderful research teams? THINK MIDWEST. THINK KIDS AND TEENS AND YOUNG ADULTS.
I got in touch with Lenny. He submitted an application with Ben Katz. They’ve worked together on a massive study of college students who come down with infectious mononucleosis – which needs more funding. They’re also working on a pediatric epidemiology study.
Agree with you about kids. Dr. David Bell, Pediatrician, is on the Board of Ron Davis’ group, I believe, and there’s Dr. Peter Rowe at John’s Hopkins, both with many years of experience treating both children and adults.
I agree with you Patricia, I didn’t vote for the second listing Maureen Hansen) as I didn’t know Dr. David Bell was on there. This is So important! They have their whole life ahead of them and it doesn’t only affect the ill teenager,etc…but their entire family. Great Point! I felt bad for missing Dr. Bell particularly as I think he has done so much for children affected by the illness.
Hard to judge when we don’t know what their research project or center would entail. But that’s a really good group that responded!
Definitely promising….
One of the missing groups is in Boston. They contacted MassCFIDS about collaborating, but unfortunately not until after they submitted their proposal. We are meeting with them in a few weeks, and they seem committed to this research even if they don’t get a center.
Thanks! Do you have any idea who the principal is? I would LOVE to know. Komaroff is there but he hasn’t done much research lately. I would be surprised if its him but there is David Systrom the pulmonologist who is doing intensive CPET studies of patients with idiopathic fatigue.
I didn’t see the Bateman/Vernon from the Bateman Horne Center or Enlander/Schadt from Mt. Sinai listed, maybe those could be the missing ones.
Good point. They are like the SMCI – participating with a lot of groups but not the leader of one. Enlander/Schadt is a possibility – I didn’t think of them. I’m hoping that its someone we never even heard of 🙂
Alert!
The identity of the 9th applicant is known. Derya Unutmaz of the Jackson Laboratory in Connecticut is the principal investigator and he’s teaming up with the Bateman-Horne Center. Unutmaz is the just the kind of researcher we hoped this grant opportunity would attract. He’s well established, works at a hot lab and has a background in ME/CFS as well.
He wrote:
“The last missing group is from Jackson Genomic Medicine, I am the PI and as you would expect it’s in close collaboration with Bateman Horne center. I think we put together an outstanding team of experts on microbiome, immunology, metabolism, clinical, computational and bioinformatics analysis -that has the possibility of creating something transformative.
Actually, I would say this is one of the most exciting grants and teams I had the fortune to assemble, despite the arduous process of putting it together.”
Cort: Jose Montoya’s group is called the Stanford CFS Initiative!
You have given their group the name of Ron Davis’s group.
Ron’s Team is the CFS Research Center at Stanford.
Please fix this. It’s confusing!
Thanks,
Janet
Fixed! My apologies.
Now if a group of philanthropists would come along and fund what NIH doesn’t….. Maybe with a 60 Minutes story or…
🙂 🙂
And then there were ten. Here is the last group brand new to ME/CFS – thanks for Charmian for providing it:
The 10th group is from Boston, a multidisciplinary team from Beth Israel Deaconess Medical Center, affiliated with Harvard Medical School. I don’t have many details except that it is headed up by Dr. Janet Mullington, a Ph.D. sleep researcher. She found out about ME/CFS from Dr. Korochetz, and apparently everyone on her team is new to ME/CFS.
People from Mass CFIDS are meeting with them next week
haven’t had a chance to read all if this but dr. chia submitted also. his is on page 3.
As you can see from all the comments, we really need this research and medical acknowledge that we are suffering with little or no acknowledgement from doctors for treatment. I have been living with fibromyalgia close to 40+ years now. Lyrica was a God send, but is no longer effective after taking it for approximately 20+ years. I am 77 yrs. old and the complications of fibro and old age combined are really engulfing me. Help me to enjoy these last years. Sincerely