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.
.jpg){kind=small}
Thank you for this article. I was unable to watch the FDA meeting; it doesn't sound as though I missed much.
ReplyDeleteI appreciate you giving information about Dr. Peterson's talk too. It is very encouraging to hear that even one of Dr. Peterson's patients on Vistide went back to work. Hope for people like me who are suffering from severe M.E. has been in short supply, so I am most grateful for this news. I hope you'll share more about this.
Patricia
Thanks for comments on Petersons' meeting, as I have been trying for days to hear about it,as I could not finish getting dressed to do. Had overdone it preparing the day before,feeling not too good for a while,from two rounds of antibiotics,first time since AMP. Vilstide sounds promising for some. I watched by webcast and realized it was best for observation as I was laying down.Missed the opportunity to speak to Dr.Rowe,4as he tilted me back in 94. He did not talk about BP at all. Was interesting to watch...Thanks for sharing the one thing I need.to hear. Have worked for recognition of M.E.many years, and see such confusion at times. Blessings, Mary C
ReplyDeletefor me...that last sentence should be highlighted! "didn't relapse OFF the drug...and that's a key, imo (having been experimenting with several combos of drug protocols for the past 7 years...yep, that's the key to WHATEVER we try. EV's COULD be an explanantion for these frustrating relapses in many patients) As always, thanks for the reporting and keeping patients in the loop!
ReplyDeletejackie n.
Thank you for your comments at the meeting.
ReplyDeleteWas Dr. Peterson's talk taped? I've been scouring the net, and I haven't found either a video or a transcript. Your remarks, by the way, made the workshop worth watching. Monday mending, indeed...
ReplyDelete