During the XMRV period, I became so horrified with the way good people like John Coffin were being treated at this forum that I stopped participating for a few years (to be fair, my health was deteriorating considerably too). Not that my opinions were in any way so vital for the survival of PR -
. And the level of discourse at PR has indeed improved considerably since then. So needless to say I tend to be someone who shares
@viggster 's frustration with constant streams of angry ALL CAPS emails and tweets and a puzzling insistence that working with the DHHS in any form is somehow bad for our community because they are clearly OUT TO GET US!!!
But...
I would note that the rhetoric of groups like ACT-UP and others during the AIDS crisis was at least as equivalent in its aggressiveness and offensiveness ("GUILTY" posters with Anthony Fauci, for instance). And they didn't even have the Web yet to fuel rumors and anger.
As unpleasant as horrible emails are, given the level of suffering and 30 years of neglect encouraging that anger to fester, I don't see how such rhetoric can be avoided. I think it should be called out, and gawd knows I certainly would disagree with it. But I would also hope that folks at the NIH know how to use their delete buttons.
Also I would agree with other folks that we are very lucky to have you as part of our community,
@viggster .
I am bothered always, first and foremost, that our advocates spend too little time trying to fix that position, but in focusing on each little issue in front of us, without sufficient regard for the whole.
This. So...yes...
This.
We are far too reactive as a community rather than developing a coherent, holistic set of goals and strategies to meet them.