Progress, no matter how small, is still progress. Any tiny incremental change advocates can achieve is improvement, and it’s important to acknowledge when it happens. I am pleased to report that NIH has taken a small step towards providing more transparency in its ME/CFS grant reviews.
During the November 2nd telebriefing by NIH, Brian Vastag asked about the makeup of the CFS Special Emphasis Panel. That is the committee that reviews and scores ME/CFS related grant proposals. The SEP went through a period of years where there were almost no ME/CFS experts involved in grant review, and so Brian’s question was important.
Dr. Joe Breen of the National Institute of Allergy and Infectious Diseases answered, saying that there were ME/CFS experts involved. He also said that the SEP rosters were available to the public, and we could examine them at any time.
I knew this was not true.
Back in 2013, I attempted to investigate the composition of the SEP, and Don Luckett at NIH told me that the rosters are not posted online “due to threats some previous panel reviewers have received.” He told me to file a FOIA request to obtain the old rosters.
It ended up not being so simple, and it took me two years to obtain those rosters. Furthermore, NIH required me to file a FOIA request after each and every SEP meeting in order to obtain the new rosters. It was a time waster for me and for FOIA staff, especially because every other grant panel roster is published on the Center for Scientific Review website.
So after the November 2nd telebriefing, I immediately wrote to Dr. Breen to bring all of this to his attention. Dr. Breen did some swift follow up, and this week he informed me that the SEP rosters will be available thirty days prior to each meeting.
The next meeting of the CFS SEP is December 6, 2016, and the roster is available. The grant reviewers will be Dr. Fred Friedberg, Dr. Nancy Klimas, Dr. Kathleen Light, Dr. Edward Mocarski, Dr. Peter Rowe, and Dr. Roland Staud. All have served on previous SEPs.
It seems like a very small victory that we will be able to see the rosters in advance. But this is a small move towards increased transparency at NIH. It is also a step in the direction of equality. Other disease areas have their rosters posted; now we do too.
My thanks to Dr. Breen and the Center for Scientific Review for making this small bit of progress possible.