It's a classic television line from Murphy Brown. It fits my knee-jerk reaction to some reports I read regarding something presented at #alssymp -- the big International ALS MND Symposium.
There seemed to be some speaker criticism of people with ALS yesterday because of the low percentages who enroll in clinical trials.
My knee-jerk reaction to that was to want to ask the speaker to please look around the room. Perhaps the ALS powers-that-be forget to invite people with ALS to participate in clinical trials the same way they forgot to invite them to be a part of the fabric of this symposium.
Surely clinical trial enrollment is a serious problem, but it will never be solved until ALS authorities do some introspection with the help of those people with ALS who experience inconsistent and mixed messaging regarding clinical trials.
Thanks very much to those who are providing us with their peeks into the proceedings. Next year I hope that those peeks and insights will continue, along with some options to experience the words and contexts directly ourselves (and ask some questions). It will make a much more robust, dynamic picture of the state of ALS research for all stakeholders.
In the meantime, if you are on twitter, I encourage you to follow @paullikeme today. He has been outstanding in giving us a glimpse into #alssymp .