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.