Sunday, April 28, 2013


My Thursday-night dinner at the FDA meeting—grilled salmon and broccolini—was terrific for hotel food.  Earlier, the cocktail hour of mostly vegetarian appetizers, arranged by advocate Denise Lopez-Majano, whose two sons are sick with ME, was equally good.  

That being said, why any of us bothers to attend these government dog-and-pony shows is anyone’s guess.  I suppose hope springs eternal and all that.  This meeting, at FDA, seemed to hold more promise, at least, than the Chronic Fatigue Syndrome Advisory Committee meetings at CDC.  Then again, the bar couldn’t get much lower.  While patients had only two minutes to talk, FDA officials waxed lyrical about the lovely baby grand piano in the hallway, should any patient care to play.

Dr. Daniel Peterson’s talk was more interesting than the FDA meeting.  Dissed by the FDA and not given a place on any of the panels, Peterson talked in his meeting across the hall about his success with Vistide when used on patients with active infections by PCR with HHV-6, Epstein Barr or CMV—meaning the virus is actively replicating—as opposed to just the high antibody numbers to these herpes viruses that many with ME sport.  Probenecid, Peterson explained, potentiates Vistide’s effects.  He found that VO2 max—one’s aerobic threshold—improves on Vistide/Probenecid, and natural killer cells increase.  Peterson asked: Why should getting rid of the virus result in VO2 max shooting up?  His theory: The virus is messing with mitochondria.  One of Peterson’s patients on Vistide checked out of a nursing home and went back to work.  Of the 27 patients on Vistide, 18 didn’t relapse off the drug. 

More later. 

Wednesday, April 24, 2013


I'm going to the FDA tomorrow and Friday.  If Internet connections and my Kindle cooperate, I'll try to post on Twitter in real or semi-real time.  If not, I'll post when I return.