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Cort - Where did you get your information from? As a patient receiveing Ampligen at one of the testing sites you mentioned and paying for it My doctor didn't know Hemispherx was running a double blind study! This drug is insanely expensive for my family and I know of patients at other sites who were / are struggling as well.
Would you please tell me - which doctors specifically ran this study? Also is it true that the patients did NOT pay for the drug? And when was Hemispherx going to break the news to those of us sweating blood to pay for this drug that they were giving it away?
This article is so I'll-informed and full of disinformation , it should be taken down.
This peer reviewed paper is about Hemispherx's pivotal AMP516 trial, which began in 1998 and was fully enrolled in 2004. There is new information in the paper, but Cort somehow misses it. You can download the paper Here
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0031334
Cort - Where did you get your information from? As a patient receiveing Ampligen at one of the testing sites you mentioned and paying for it My doctor didn't know Hemispherx was running a double blind study! This drug is insanely expensive for my family and I know of patients at other sites who were / are struggling as well.
Would you please tell me - which doctors specifically ran this study? Also is it true that the patients did NOT pay for the drug? And when was Hemispherx going to break the news to those of us sweating blood to pay for this drug that they were giving it away?
I was taking Ampligen in 2010 & 2011, from what I gathered about the 300 person study, I believe that they re-designed it after the XMRV news broke in 2009. They always knew that Ampligen worked for some and not for others, and now they thought they may know why, XMRV+ patients may be the ones who responded.
So they took time to redesign and work with the WPI to be able to detect XMRV. They had a big meeting in Florida a little over a year ago with all the doctors/nurses who worked with Ampligen. In part, I believe to gear up for the big study and to change testing protocals, one was the inclusion of XMRV testing in study participants. I was even XMRV tested through HEB, although I had already started the drug.
Fast forward to news of when XMRV theory fell apart. I think this threw a wrench into their study plans - again. Did it have to be redesigned? They were constantly behind the curve. They can't keep up their studies as fast as the science was changing in this area.
I don't know if we would have the 300 person study going yet, if XMRV wasn't in the mix, but I believe, at the least, it was a huge distraction for HEB.
I think one criticism of Hemispherx is that they've jumped all over the place looking for ways for Ampligen to fit in. In some ways that makes sense since it's an immune activator but if alot of money was wasted with XMRV - that's a real shame.