Dr. Friedman's Talk, May 12, 2011, Burlington Vermont
Notes by C.Blair
Dr. Kenneth Friedman spoke at the VT CFIDS May 12 Awareness Day in Burlington, VT.
He shared some experiences and thoughts from the State of Knowledge Workshop in April and further thoughts about going forward. He said that for him the most exiting presentation was by Gordon Broderick and the most disappointing was by Dr. Coffin, not for his report on his research project but for the strong opinion he expressed afterwards about further research on XMRV. Dr. Friedman felt this was inappropriate and unwarranted, scientifically. Dr. Friedman was also disappointed that the workshop ended up being more of a symposium in which presenters only shared their research and views, rather than a true workshop in which there was sufficient time for focussed discussion, in order to develop more intelligent next steps in the research. Although his organizational committee had scheduled time for discussion, this was nearly always taken up by a presenter’s running over, which was permitted. He acknowledged that there was more discussion over meals and after hours, but this was not as focussed or productive as it might have been in the full group.
The next big meeting he will participate in is the Ottawa Conference in September. This
will be much more international. A revised Canadian Consensus Definition will be presented. More time will be allocated for discussion among the participants. Abstracts
of what the presenters will bring are being sent in now. He explained to me that abstracts are only a starting point and that further research and thoughts will also be
presented. He hopes that many will attend and participate.
Dr. Friedman is part of PANDORA, which works politically as a coalition to advance the needs of those with neuro-immune diseases. He thinks that it is necessary to join
together as a larger political entity in order to get the attention of the HHS, Our ME-CFS
patient group is still too small to be politically effective, in his view. He hopes that more of us will join the coalition of PANDORA. He said that this does not require agreeing with, endorsing or being active in every project, but only those you support. Being part of a larger coalition will be a much more successful route to getting funding for research and other needed resources.
I told Dr. Friedman how much I, and other members of forums I am on, appreciated his
courage in describing his experience as a medical school faculty member in the NIH State of Knowledge Workshop, and he deeply appreciated those comments. Dr. Friedman has been a hard-working and courageous advocate for our ME-CFS community.