Dennis Mangan had made good big time on his NIH makeover thus far. First it was the impromptu meeting with patients at the CFSAC meeting. Then there was the name change (ME/CFS), the ListServ, then using patients and researchers to produce the first NIH Research Workshop/Conference in 8 years. The Workshop is every bit as good as we’d hoped and congratulations must go to the planning committee composed of Pat Fero, Mary Schweitzer, Ken Friedman, Dr. Jason, Dr. Klimas and Dr. Vernon.
What a difference eight years makes. Yes, funding is still abysmal but something at the NIH has changed. The last conference was dominated by NIH researchers, many of whom we’d never heard of and who had peripheral at best connections to ME/CFS. Ten of the fifteen speakers (Sternberg, Dhabhar, Lopez, Adler, Richardson, Toth, Opp, Park, Heitkemper, Arnold) had never published on CFS only four speakers (White, Vernon, Jones and Klimas had published frequently on CFS; one of which was a behaviorist.
This Workshop is chockfull of illuminaries from the CFS research community; people who have made a difference in the field but are generally not well known outside of it. Now is their chance to make their case to the rest of the research community. Having watched most of them before I’m confident they will do a good job.
The ramifications of the Workshop could be large. What will researchers think after watching Dr. John Chia, for, instance, methodically and carefully, reproduce his stunning enteroviral gut infection studies? Or after hearing Dr. Snell explicate the strange metabolic abnormalities the Pacific Fatigue Lab has picked up after exercise?
There are a few disappointments, of course. I would loved to have seen Dr. Peterson on the agenda (as was rumored). I believe a session on stress induced aberrations in CFS that demonstrated how vital it is to analyze how systems function at work would have a great aid. Baseline tests simply don’t cut it in CFS, for the most part, and I hope the conference gets across the need for researchers to ‘push’ the system they are looking by including exercise, drugs or other functional stressors etc.