In early August, Fred Friedberg set our expectations for the discussion of the ICC definition: The lead author of the new criteria, Dr. Bruce Carruthers, will be a featured speaker at the IACFS/ME Research and Clinical Conference in Ottawa, Sept. 22-25, 2011.... He will share the podium with prominent CFS/ME researchers Dr. Leonard Jason and Dr. Elizabeth Unger in a 90-minute, case-definitions symposium that will allow plenty of time for Q and A about the new criteria. I expect this to be a lively session.
On September 24, James Deagle, Editor-In-Chief, The Journey: Life & Living with ME/CFS and FMS A publication of the National ME/FM Action Network, reported on the ICC presentation this way: "Bruce Carruthers, M.D. (a medical advisor with the National ME/FM Action Network) presented the 2003 Canadian Consensus Criteria, which he co-authored, and is currently used worldwide as one of the standard definitions for ME/CFS. Dr. Carruthers said he hopes "that this case definition and its descendents will continue to emphasize both the clinical/epidemiological/research realms of observation and challenge all participants to integrate them into a mutual confirmation/deconfirmation process that characterizes both clinical medicine, epidemiology and science in general."
Back in July, Lydia Neilson, a key supporter of the CCC, made her position on the ICC clear with her first comment: I wish to advise that neither myself, or the National ME/FM Action Network had any role in this new definition nor were we asked to participate.... At this moment, the only aspect I can comment on is that I feel personally that it is premature to separate ME from CFS.
If the ICC didn't find many friends in Ottawa, it's our loss.
The year after Fukuda was published, Hillary Johnson quoted a dispirited Dan Peterson: I'm not sure the momentum is there from the patients. If I had a disease that was totally disabling, I would be much more angry and aggressive than most of the patients I know.