“Agency heads are scared to death of how the patient population will react if XMRV works out.” - Suzanne Vernon, September 11th, Lobby of the Salt Lake City Downtown Hilton – During a break at the 2010 OFFER Utah Patient Education Conference I’ve been struggling with what I ought to do with this for almost six months. Suzanne Vernon said this during a conversation she was having with me and Cort. She just sort of interjected it. No real need nor was there much of a segue. She said that it should not be repeated. Yet I wondered why I earth she would say something like that to someone she had just met. I was troubled by Dr. Vernon’s words. I wished I had not heard it. I discussed the comment at length with my wife. I’ve asked Cort about it on a couple of occasions. He responded that he does not recall having heard her say it. And so I approached Jennie Spotila and I asked her what Dr. Vernon might have meant. That conversation took place on December 10, 2010. Jennie said she would check with Dr. Vernon and get back to me. I haven’t heard back from Jennie on this topic and so I’m assuming that there won’t be a reply. Why can’t this be shared with the patient community? Who am I protecting and who is being harmed? I have not felt that it was right to keep this from the patient community. I was reading Hillary Johnson's recent post about “FRENEMIES”. Hillary stated ” Whatever these two [Suzanne Vernon and Kim McCleary] tell you they’re doing, you can assume it’s about one-twentieth of what they’re doing behind the scenes and, given the lessons of history, you can bet it’s not on your behalf.” I was reminded of Dr. Vernon’s comments. And what about Hillary's comment about Kim McCleary's inside voice: I’m quite sure from the CAA’s actions and public statements that they do not share my sense of urgency or appreciation of the severity of ME. I’ve come to feel that not sharing Dr. Vernon’s comment is keeping a secret that can only perpetuate the harm being done to all ME patients.