Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
My impression was that Dr. Montoya's original cohort improved much faster than the group of patients in the trial.
So... Montoya presented his findings of the larger study at the HHV6 meeting about a year ago. Although at that time they were preliminary. Supposedly he was going to publish a paper regardless of the outcome of the study. Did this every happen?
I wouldn't say it bombed because there was a statistically significant improvement in cognitive functioning. So it is doing something although it is not effective as we would like. And when you say the study was extended from 6 months to a year, that is misleading, because I believe what was meant by that was that the patients took the drug for 6 months and then were followed up for another 6 months after they stopped taking it. As Dr. Lerner has said, that is really too short. It takes a good 8-9 months even for Ampligen to work. At 6 months there was not a significant difference between Amp and placebo.The second more thorough study basically bombed. My understanding is that Dr. Montoya extended the study from 6 months to a year because Dr. Lerner and others have found that while many patients see improvement in their immune functioning and reduced viral presence in 6 months it often takes a year or so for the patient to actually feel better.
Thanks for this info, I heard he was coming out with a new paper soon but did not know the specific topic.Cort said:Dr. Lerner will come out with a paper soon indicating that co-infections are very important; if you have another infection then Valcyte is not going to work very well - you need to take care of that one as well.
If I recall, the conference presentation said that the physical measure was approaching statistical significance. So it seems to me that with the small size of the study, that was just making it harder for itself, because the smaller the sample size, the larger the difference is needed to be statistically significant. Statistical significance is not the same as clinical significance.
So, in general, are top docs still prescribing Valcyte? I dont see many new posts on it anywhere. Are people holding out for a better anti viral? I cant seem to figure out where HHV6 falls into the equation anymore and what the best way to treat it. I have all the natural anti virals and have never noticed any difference.
Yes or No on Valcyte these days?????