When we started working on the 21st Century Cures Act lobbying campaign we quickly learned that NIH officials are continuing to tell people that no one is interested in researching ME/CFS and that the research applications they have received have been poor. At Tuesday’s CFSAC meeting Cheryl Kitt, the Deputy Director of the Center for Scientific Review at NIH, claimed that there aren’t many people interested in researching ME/CFS and that the NIH hasn’t received meritorious applications.
Janet Dafoe, wife of Stanford geneticist Ron Davis and mother to Whitney Dafoe, a very severely ill ME patient, had a succinct reply to this claim: “This statement from NIH is just insulting to all the good researchers geared up to do research and to all the suffering millions of US citizens who need answers and treatment!” As she explained, “Ronald W Davis, renowned Stanford researcher, submitted two applications for grants with co-investigators Mike Snyder, Chair of Genetics Department and Mark Davis, Chair of Immunology Department, and Ron Thompkins, Harvard PhD, et. al, and was told by NIH not to even submit the full grant proposal because they wouldn’t fund it. Wouldn’t even review it!”
Preeminent researchers, including Ian Lipkin and Ron Davis, have been rejected by NIH reviewers every time they apply to study ME/CFS, yet are able to get ample funding for many other areas of research.
Here is Cheryl Kitt at the August 18, 2015 CFSAC meeting:
We have transcribed her presentation for anyone who find it easier to read than watch videos:
“We need many more people interested in the problem and applying for research dollars. As Vicky said, we fund the best science. If applications come in… in fact ME/CFS is a very high priority for us. If there were meritorious applications to fund we would fund them. If Nancy were here she will tell you the challenge in peer review of these applications— I have to tell you they’re all not that great. You wouldn’t want us to fund those applications. We want to fund the best that will benefit you.
And so that’s the challenge for us. We get very few per year. Just throwing money out there will not get people to …sometimes they suddenly get interested, but they have to be poised and ready to go with a good idea and a good methodology to do it. It’s not that we won’t fund it, we would if there were applications there — and meritorious, that pass peer review. I hope that helps you understand.”
23 thoughts on “NIH: ME/CFS research applications are low quality”
I want to know who the peer reviewers are.
Historically they have been mostly dentists and psychologists. Now they are mostly MDs and PhDs, but the process still violates federal law because the reviewers are rarely familiar with ME”cfs”.
Yes! There must be a list!?
I want to know too, jane.
Who are these people denying possible help to millions of patients- while they wait helplessly? If they had someone in their family with it they would not be so callous. To be singled out and omitted is a travesty! I also believe that the research done on ME-CFS could help MANY other diseases be understood and treated. It involves many body systems and shows the interconnection- when something goes wrong. Conditions such as viral infections, immune deficiencies, POTS, IBS, sensory problems, pain and poor mental function and extreme fatigue (weakness) often co-exist with ME-CFS. Just because it’s difficult, doesn’t mean it can’t be done. It means it SHOULD BE DONE!
Peer reviewers names are not disclosed – they are confidential. Sometimes a researcher may recognize a reviewer by his or her references or style, but not often. What I hope that Dr. Davis might share with us is the reason (excuse) given for not funding his research. He is the only one who could share this info – again because of confidentiality. I understand why he may not want to do this – he may be resubmitting for reconsideration and he has said that he has spoken directly to Dr. Collins, so there may be hope there. What we can always find out is numbers – how many grant proposals were submitted, how many were funded, etc. But information about particular grants can only be disclosed by the person who submitted it.
Is there a way to find out credentials if not names? Maybe they think then the public or other researchers could figure out who they were by credentials.
I just feel that we should know credentials.
How can we then inspire researcher to resubmit good and professional applications that were rejected ,and also inspire researchers to submit several more and better quality research applications. Are there specific things we could do to solve these obstacles?
I ask MEAction to sponsor email campaigns (1) writing to NIH asking WHY they consider applications from people like Ron Davis and Ian Lipkin “low quality” and (2) writing to CDC asking WHY they defunded ME/CFS research in their proposed budget.
Let’s hold people accountable for their actions.
(1) They can’t tell us why they rejected a grant application – it’s confidential. The only one who can tell us is the grant applicant.
(2) CDC didn’t defund ME/CFS – it’s a proposal made by Congress.
There is one for the latter. A form letter was posted. I agree.
There is another action on this site, hoping to get John Oliver to do a segment on this issue. I urge everyone to participate! It takes a few minutes, but this issue needs broad media coverage.
Please, everyone, go to hbo.com, Sign in –> talk –> forums —> Last Week. They will send you an email verifying that you did indeed register. Then, go back and like the comments you agree with (I think most are reasonable), or add your own.
You can also go to the Last Week Tonight facebook page. Post in the visitor’s comments, or scroll down and like the comments previously posted.
The more interest from viewers that his producers see, the more likely they are to produce a segment on this debacle. And that could help us.
For Ron Davis’s grant proposals he was not even allowed a peer review. They require a pre-application to get permission to send the full grant proposal. Ron and his colleagues sent a detailed summary of their proposals and were told they would not allow them to even submit the grants. This is a higher up decision. No peer review. Ron has written a document with their reasons and his responses. He is allowing it to be made public. This is excellent cutting edge research. Very comprehensive. Best researchers in the world. That woman from NIH should be ashamed! Ridiculous statement and blatantly, verifiably untrue. Insulting.
Janet, thank you for informing us. This gives a clue as to where the problem actually is w/ NIH. This makes no sense unless someone is prejudiced or they don’t want to “open a can of worms” and fund another major disease. B/c it is. It’s wicked. Almost any other disease could greatly be improved w/ diet, prevention, lifestyle changes, or existing medication…in most cases of ME/CFS those things aren’t even an option or make little to no difference! We need help. Your son needs help. It’s shameful. I wonder about the acknowledgement issue which precedes funding in regards to the CDC studies as well. I and my dad are in that study at Dr. Peterson’s and per his statement released on Simmaron’s site, there are some great leads to follow up on if funding continues. They cut all 5 mil. Any specific location or time to look for the document Dr. Davis plans on releasing? I think a huge problem in all the gov’t organizations is they are all NON-EXPERTS FUNCTIONING AS EXPERTS dictating a final say. The IOM (more so) and P2P had some expert involvement and non-experts…their sentiment was clear. MORE RESEARCH IS URGENTLY (I’d say desperately) needed. Those reports were SPONSORED by gov’t health organizations…but apparently they are choosing to ignore the findings.
I wish I could say I am shocked by this.
Could you give us a link to Dr. Davis’ document, please? I applaud him for doing this. This is valuable information that we can use to counteract what was said, but more importantly, to demand changes that will allow such important research to go forward.
Thank you Janet for your excellent reply to Cheryl Kitt’s talk. She must have been posturing for politicians or others asking about the dearth of research, because the ME/CFS community is too well-informed to fall for such spin and misinformation.
Thank you so much for speaking out about this Janet Dafoe.
Is the document you mention available somewhere online?
It would be great to have access to something like this so PWME could blog, tweet etc about this in reply to the NIH statement.
Thanks again for sharing this invaluable document with us Janet. We wrote about Ron’s proposal rejection and response at http://meaction.net/2015/08/20/ron-davis-nih-proposal/ and the document itself can be found at http://meaction.net/wp-content/uploads/2015/08/ResponseToNIHRejectionsRonDavis.pdf
@CanaryinaCoalMine @JenBrea @MEAction the vid in this article and and then contrasted w/ the researchers (R. Davis, M. Davis, Lipkin, Hornig, Montoya, the Harvard docs, Jared Younger, Kogelnik) talking about their DENIED proposals to NIH when they have written and been accepted for grants on other diseases. PRICELESS!!! In the film that would be great, or just a piece for advertising/slamming them. It’s worked for other political campaigns and injustices. This is equal to fighting Monsanto…probably worse.
Thank you Janet, for your testimony at CFSAC.
Lipkin on why his grant application was rejected:
“I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores. And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness. I was floored. I protested, and for reasons that are obscure to me this same individual wound up back on the study section, and I got a similar unfundable score. Am I upset about this? Absolutely. ”
Maybe Cheryl Kitt is unaware there is a bias among the reviewers?
It made me sick when I heard it. The body language of this person said it all: let’s finish this so I can go home.
It doesn’t seem credible that the NIH can receive sufficient meritorious applications for other diseases, but not for ME. It’s well known that accredited researchers from world class institutions have been turned down for ME funding, but are granted funds to study other a disease conditions.
ME researchers appear to be in a Catch 22 process with the NIH. In the IACFS/ME response
to the NIH P2P Draft Report on ME/CFS, this group said that: “the US government does not want to invest additional funds because not enough is known about this disease and there are not enough researchers. Yet a critical reason why we have a dearth of researchers and knowledge is because of the poor funding situation, which has endured for the past 3 decades.”
Hillary Johnson, reported in her outstanding book, Osler’s Web, that following the failure to find “Chronic Epstein Barr Virus” as the cause of ME, the NIH decided ME is a psychological illness. Is this belief still the real reason why research funding levels for ME are so low?
Researchers have proven over and over again that ME is a physiological/organic illness, but many doctors still cling to the outmoded concept that ME is some type of hysteria.
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