Here is the reality and the context for why I write this particular blog entry: My email inbox is filled with so much pain and confusion, as patients try to figure out what the BWG study means to them. I feel it is my obligation to both these patients and the larger community to share my opinions. I think what the BWG results mean is that all the XMRV/HGRV testing done at VIP Dx has been and is now null and void.Remember, that is the personal opinion of Jamie Deckoff-Jones. But I commend her on her clear words on this. Now we need something official from the WPI. We need to know what is going on. As I have commented:
I have watched this whole thing unfold and kept quiet because I hoped that management at the WPI would come to their senses, before it was too late. They have not, so I now feel obligated to share what I know.
Being wrong is OK, but we need to know what went wrong. Nothing is more difficult than orderly reatreat from an unholdable position. – ClausewitzJamie writes on about testing at WPI vs. testing at VIP Dx lab:
Keep in mind that Dr. Mikovits works at the WPI research lab, which is a separate lab from the clinical, commercially-oriented VIP Dx lab. She believes that she has reproduced her original work many times and found evidence of infection in the patients who were previously found XMRV positive. But she never found any single patient positive on every date tested by every assay. So there has been an assumption that there were false negatives in the WPI research lab for some time. Another important thing to keep in mind is that WPI routinely used several tests on each sample, whereas VIP Dx used different, more limited testing, on the samples they received, testing that apparently was never truly validated against WPI methods or performed with appropriate controls. I personally don't know why this was the case or how it happened. Obviously the decision to sell a test was a very poor one, hindsight being 20/20. It left the institute with a difficult conflict of interest.I think this is where Jamie is deluding herself – but this is all wobbly believe and hear-say. We need to take it step by step, and we need to find out conclusively what the testing at the WPI was worth and might still be worth. I'm afraid it might not be worth much, but guessing is not good enough and we need to know.
Now it appears the WPI research program is getting thrown under the bus, but VIP Dx is still up and running, now minus XMRV testing. None of this means that we don't have HGRV's, or that some of the work that came out of the Mikovits-led research lab wasn't correct. What it does mean is that there is no validated test for clinical, commercial use.
And it means we are now at risk of losing all the gains we've made because of poor managerial decisions.If there were real research gains, that is.