Thoughts from Mary Schweitzer 2/20/10
For me the greatest concern is that Big Pharma, in the race to re-brand old AIDS drugs as XMRV drugs, will see to it that their biggest competitor - Ampligen - dies on the vine.
In between chortling at the notion that XMRV "might" get into the blood supply (dudes, that horse left the barn 25 years ago), and dismay that the media does not seem capable of understanding what a replication study is (and the media is getting no help from so-called scientific publications) -
I worry I will lose Ampligen again, paradoxically, because it is SO good against XMRV (given we already know it works well in keeping dormant the immune markers and viruses that correlate with XMRV).
And yes - don't we all wonder where we would be if we had been treated early? When I was swept up in the EBV outbreak at Villanova in 1990, my students were all getting antivirals, but my physician refused to treat me at all - and even insisted I could continue to work through the disease, if I only went up to Villanova on the days I taught (no committees, which cost me two votes for tenure but I got tenure anyway).
Again - anecdotal evidence (what Mary has observed) suggests if you can catch the progression of the disease before HHV-6 gets involved (and maybe other diseases like Coxsackie B), you can get better and stay off Ampligen indefinitely - but if you have to fend off these other viruses, eventually you will relapse and relapse badly.
Which leads to the question that has bedeviled me since 2002 (when I went back on Ampligen after 7 months of relapse) - just what IS a maintenance dose for Ampligen?
It's so frustrating that we can't get past phase III - because THOSE are the kinds of questions we need answered, and you can't conduct those kinds of studies until you get to the fourth stage of drug approval.