In order to get NIH funding, a researcher has to succeed in several levels of application review. A persistent controversy in the field of ME/CFS is the allegation that grant applications are not reviewed by ME/CFS experts. So let’s take a peek behind the curtain and find out who is reviewing ME/CFS applications.
The vast majority of ME/CFS grants are assigned to the ME/CFS Special Emphasis Panel for review and scoring. The Panel is not a standing study section with the same members over multiple meetings. For each meeting (there are two or three per year), NIH invites a different group of reviewers based on the expertise needed for the current applications. So if there is a virology application, NIH would include a virologist on the panel.
But it does not automatically mean that the invited reviewers know much about ME/CFS. In 2014, Dr. Ian Lipkin said that a grant reviewer had given him terrible scores because CFS is “psychosomatic.” And if these are the types of scientists scoring ME/CFS grants, then it should be no surprise that researchers have trouble getting funding.
As part of a larger project, I obtained the rosters for the two grant review meetings of the ME/CFS Special Emphasis Panel in 2015. I’ve linked to the PubMed results for each researcher so you can see the studies they’ve published, but I’ve also tried to characterize their expertise relevant to ME/CFS. Here is the combined list:
- Maria-Eugenia Ariza, The Ohio State University (Epstein-Barr virus and herpes viruses), December 2, 2015
- James Baraniuk, Georgetown University (ME/CFS and Gulf War Illness expertise), December 2, 2015
- Italo Biaggioni, Vanderbilt University (POTS and ME/CFS expertise), December 2, 2015
- Maureen Hanson, Cornell University (ME/CFS expertise), December 2, 2015
- Ben Katz, Northwestern University, (ME/CFS expertise), April 14, 2015
- Anthony Komaroff, Harvard University, (ME/CFS expertise), April 14, 2015
- Alan Light, University of Utah, (ME/CFS expertise), April 14 and December 2, 2015
- Roland Staud, University of Florida, (CFS and FM expertise), April 14 and December 2, 2015
- Peter Medveczky, University of South Florida, (herpes virus expertise), April 14, 2015
- Marshall Williams, The Ohio State University, (Epstein-Barr virus), April 14, 2015
- Jarred Younger, University of Alabama, (chronic pain and ME/CFS), April 14 and December 2, 2015
Of these eleven reviewers, eight can be fairly described as having ME/CFS expertise, even if it is not the focus of all their research. The three remaining reviewers are experts in human herpes viruses, something that is very relevant to ME/CFS.
If you look at the rosters by each meeting, then the April 14, 2015 review meeting was 70% ME/CFS experts (five of seven). The December 2, 2015 meeting was 85% ME/CFS experts (six of seven). That’s encouraging.
However, it is important to note that this is a list for just two review meetings. And not every single ME/CFS application goes to the Special Emphasis Panel. If Dr. Lipkin’s 2014 application went to a different study section, then the makeup of the SEP has no bearing on the prejudicial scoring he received. And it is also important to note that just because 2015 was a good year, that does not mean it has always been that way.
The makeup of the ME/CFS Special Emphasis Panel is just one piece of the NIH funding puzzle. The grant applications being submitted and accepted for review, their reviewer assignments, and the competition with other grants going to the Institutes – all of these factors contribute to the extremely low funding we see year after year. That’s why I believe a Request for Applications with set aside funds is critical to reversing the trend of dismal funding.
Great blog on a VERY important (but under-appreciated) topic.
It’s incredible the progress we’ve made in this area.
Thanks for all the work you do!
Can’t complain about this study section personnel, but it’s not much help if the blackball on spending money on ME is still in force. Which it will be as long as Anthony Fauci is alive. Please note sound of dog not barking on Dr. Collins’ NIH Clinical Center project for the study of fatigue and something-or-other. Or is the pitch just too high to hear?
More generally and philosophically I am wondering if the whole NIH review structure doesn’t need to be reviewed. I don’t see Google (Alphabet) Facebook, Genentech and so on getting things accomplished by holding reviews. Can you imagine Winston Churchill fighting WWII through an SEP? FDR launching the New Deal? NASA putting a man on the moon?
Oh, not to forget; GREAT WORK JENNY!!!
Jennie, thank you as always for your great work. Your investigations and blogs are enormously important. Love the RFA Ticker!
I’m dying to hear your thoughts on the agencies’ responses to the CFSAC recommendations. But I know you have more than enough to deal with. Sending thoughts and thank yous.
Thank you for continuing to work so hard for us and keep us informed!
Jennie, more terrific sleuthing–don’t know how you manage this while still in recovery mode from personal tragedies. I would love to know the evidence for Deborah Waroff’s pointing to Fauci–I recall that Hillary Johnson pointed a finger at him during a talk she gave at the end of one of the London conferences a few years ago, but then Ian Lipton said that he had conversations with Fauci and was clear that he was not the figure behind the stone wall. But clearly NIH is still in lock down as far as we are concerned, and you are doing a great job at peering behind the scenes and publishing what you find–many thanks for all your continuing work!
It is not our imagination that SEPs are frequently dominated by non-experts. From “Thirty Years of Disdain” (M. Dimmock, M. Lazell-‐Fairman, 2015):
Both advocates and CFSAC have raised this issue of inadequate SEP member expertise. In a review of the 2004 SEP members, Craig Maupin found that of 30-‐40
different reviewers, only six demonstrated some interest in CFS and only three were predominantly focused on CFS. Further, of those 6, three were focused on behavioral issues. 730
Dr.Ronald Glaser raised similar issues at a CFSAC in November 2007, when he reported that over the previous three years, only 15 percent of the members of the Special Emphasis Panel had ever worked on anything related to this disease. He emphasized that the field wasn’t moving forward “because of the nature of the study sections.” 731
(There is more on this topic in the cited document)
Jenny, thanks for the information.
I think Joe Landson’s recent comment here is very apropos. It’s the same kind of mucked up NIH attitude I ran into there 25 years ago.
http://occupyme.net/2015/11/10/someone-had-to-say-it/#comment-134273
“In addition to her horrifying and insensitive public remarks at the recent CFSAC meeting, Dr. Kitt condescended to speak to me privately. She claimed no one was “interested” in our illness; praised Stephen Straus and claimed he had “proved” our illness wasn’t immune; and finally added that by keeping research levels low, the NIH is “protecting us from bad science”. These comments echo Dr. Gottesman’s equally absurd remarks at a previous meeting with patients, so apparently are widely held in the NIH bureaucracy. So even if Dr. Collins is sincere, these are the attitudes he has to fight through just to get to us. His own people seem determined to continue treating us with the contempt and disdain they always have. Until that changes, it will be hard to start a dialogue with anyone.”
I find it outstanding that anyone connected with the NIH can still label ME/CFS as “psychosomatic,” or turn down grant applications.
My question here is: Doesn’t anyone at the NIH read the IOM report on ME/CFS?
The committee was set up and examined evidence and heard from sufferers and wrote an extensive report which I think NIH doesn’t know how to handle.
But, gosh, if all these reviewers read the IOM report, they would learn a lot. Also, if any of them looked at reports from Stanford, Columbia, or read David Tuller’s articles in the NY Times Science section or read the articles in the Washington Post (hardly obscure schools or publications), they would learn about the biological basis of this disease.
I don’t think it’s too much to ask that they read the IOM report as it was commissioned by government agencies and had a gamut of panelists.
Oops, didn’t mean “outstanding” in my first sentence. More like “outrageous.” Maybe “perplexing.”
Your suggestion is very good. How do we make it advance forward?
A number of advocates are working on pushing the NIH to issue an RFA. I think we will need Congressional pressure as well.
If anyone has the exact location on the video which shows Dr. Kitt saying the things Joe Landson refers to, would you pass it along, please? I would like to see all her comments. Thank you.
I believe this was a one on one exchange between Dr. Kitt and Joe Landson.
” Joe Landson says:
November 10, 2015 at 6:31 pm
In addition to her horrifying and insensitive public remarks at the recent CFSAC meeting, Dr. Kitt condescended to speak to me privately. She claimed no one was “interested” in our illness; praised Stephen Straus and claimed he had “proved” our illness wasn’t immune; and finally added that by keeping research levels low, the NIH is “protecting us from bad science”. These comments echo Dr. Gottesman’s equally absurd remarks at a previous meeting with patients, so apparently are widely held in the NIH bureaucracy. So even if Dr. Collins is sincere, these are the attitudes he has to fight through just to get to us. His own people seem determined to continue treating us with the contempt and disdain they always have. Until that changes, it will be hard to start a dialogue with anyone.”
Thanks, Denise, but it looks as though Joe is referring to a public section of the meeting initially. ??
Ahhh – if it was a public session it ought to be in the CFSAC minutes — http://www.hhs.gov/advcomcfs/meetings/
Thank you so much for using your knowledge and expertise to advocate on behalf of all of us, Jennie! I really appreciate the work you do to help us understand what is happening at the NIH.
do we know why grants sometimes go to special emphasis panels and sometimes not? what are the criteria to qualify for SEP?