A few highlights from NIH/FDA telebriefing - Aug. 23, 2010
The first few minutes was a summary of the paper and background on XMRV in CFS, given by Dr. Alter.
Then questions came in from the media for another 30 minutes or so. Most of my notes, however, are from the 1st segment.
Dr. Alter made a lot of interesting points that gave strength to the WPI findings. I found myself being very grateful for him and his defense of the WPI research. Some highlights from his summary:
* "[Given the findings of XMRV and its related variants] A better term is Meurine Leukemia Virus-Related Viruses, which emcompasses XMRV"
* They found a "Dramatic Association" (yes, he used the word "dramatic"): 86% in PWC's vs. 6.6% of healthy blood donors.
* "Have not [yet] proven causality....many many more pieces to fulfill"
* Confirms findings of WPI's Science Paper (later he amended his comments during the reporter segment to say Highly Confirmatory!
, and also admitted that the WPI's research is more advanced because they have already cultured the virus in patients as well as having found antibodies in patients, which the NIH said was not part of this study, but they're working on it.
* Dilemma as to why CDC found nothing, time is simply needed to work this out
During the Q&A, I jotted down the following:
* A 2nd FDA guy (not Dr. Lo), responded to a question about whether there is currently an FDA approved test. He said (paraphrased) XMRV working group is tasked with solving standardization and validation issues for assays; but until then "no FDA Approved test is ready at this time", only assays used in the research setting are ready right now
* Dr. Lo gave a very good, simple explanation of the difference between polytropic and xenotropic (the difference between the polytropic MLVs they found and XMRV). He said a Polytropic retrovirus is able to infect mouse cells in additon to non-mouse cells (other animals), whereas Xenotropic can no longer infect mouse cells...it can only infect non-mouse cells. He went on to say that this actually strengthens or extends the WPI findings, because it is more characteristic of how other retroviruses work.
* Dr. Lo (or Alter, I can't remember) said another reason this Polytropic finding was important is that it gave them confidence that they were dealing with a real family of retroviruses and not a lab contaminant. Paraphrasing still: Because they found several mutations in patients, not just a single strain (like in the Xenotropic model), this makes the retroviral infection theory much more plausible for CFS. It's how other retroviruses behave. He said the WPI has since found more than one strain also (since the Oct. Science paper), so they are in agreement about that.
* Dr. Alter is currently doing another study testing 1000 blood samples to help solve the transfusion link by looking at frozen banked samples of known blood recipients. Data will be available soon. (He was saying it in the context of how to move the state of knowledge forward, so I got the feeling it was going to be good news...but I obviously don't know)
* Good ol' Dr. Steve Monroe from CDC was mostly silent on this call (as was humorously pointed out by Recovery Soon), but the couple of times Monroe did speak, it was classic CYA mode. It was transparent. The one quote I wrote down from him was that the CDC found zero XMRV or related MLVs in CFS [or healthy controls I might add], but he was oh so gleeful to add that they did find some in prostate cancer. You could almost hear him sweating bullets, and I think he was praying that answer would put all our minds at ease, once and for all.
* One of the authors (or the 2nd FDA guy, I can't remember) concluded by saying that future studies, especially within the XMRV working group would be aimed at 1) causality and 2) vector of transmission
I sure hope the media can read between the lines and tell the accurate story here. Why did none of the reporters latch on to the reality that 4-7% of the healthy population have a dang retrovirus?!!!? and ask some hard-nosed follow-up questions? Here's hoping they will ask those questions soon since they missed their chance on this telebriefing.
No mistake about this, though: This NIH/FDA paper (which is already almost 5 months old!) is a huge step forward!
Now I guess it's back to waiting for the NEXT positive papers that are supposedly coming out soon. Maybe some good stuff in time to be discussed at the Sept. 7 & 8 XMRV conference?