Rumor Contamination: Put Up or Shut Up
I imagine that they do have a cogent theory for all of this - they are just not communicating to us about it - they've left us out, which is bad, because they really are engaged in this topic and they know that. I wish to God I had asked LeGrice about the antibodies and the ability to grow the virus at the CFSAC meeting - I just spaced it out.
Boy I sure wished you would have asked Le Grice about that too. Perhaps I would feel better about Le Grice and his personal and scientific motives. As for the conversations to which we are not privy, I would say, "If you want to engender trust in this process then speak openly and in a detailed manner”. With patients in the room, on the video conference and watching it later, Le Grice's warnings took up a great deal of air-time without saying anything specific. Put up or shut up, my life is riding on your professional behavior. Posturing without substance, whatever the reason, is morally wrong. Don’t hide behind “scientific skepticism” with thin arguments about (rumor) contamination.
I’m leaving open the possibility of XMRV just being there by happenstance but want to see this science nailed down openly and honestly and while I still might actually benefit from a treatment. Too many just seem to just want it to go away.
People have gone to the trouble of putting rebuttals (some rather poor ones) to both the Lombardi et. al and Lo/Alter papers in the journals in which they were published. That's the bright light under the big top where the brave people stuck their neck out originally and did amazing work in the face of strong opposition. Go put forth the theory there rather than some half-baked notion in the halls of a conference. Put up or shut up, my life is riding on your professional behavior.
As we know, there are obvious reasons to slow down research such as keeping panic in the public at bay, being able to say the blood supply is protected, all those disability/health insurance costs, SSDI costs, and George’s favorite – to have a cure before acknowledging the virus. I hope we don’t have to wait that long.
Mark covers the attitudes and the desire to make this go away quite well.
I agree that the onus is now on the WPI - and there is little public discussion of the other possibilities - which is rough. Hopefully all the other possibilities are being explored behind the scenes. I imagine we would know from Judy if they weren't be being explored. So hopefully this is just a difficult time in which they have to grin and bear it and it will work out in the end.
I’m not really sure what you’re driving at here. I don’t think the onus is on the WPI for anything right now in the context. Please clarify as I don’t believe until such time as a plausible, thorough and written contamination accusation is made it’s all Rumor Contamination. Again, put up or shut up.
Coffin is definitely staying above the fray - I think he must either be unclear about XMRV or he is one of those guys that wants to stay above the fray.
I would say it’s the latter and I’ve lost a measure of respect for the man who is one of the few people who could have gotten all the kids together and said “Shut up and color” but he instead has chosen to be aloof. It’s not hard to come to the conclusion that HE considers NOT being “neutral” to be a tenuous position. Neutral in this case means allowing unsubstantiated rumor contamination accusations to proceed unchecked.
And who but Coffin might have selected Stoye to keep out “discussions of ‘policy’”. His mentee would have appeared to have served his master well.
I imagine they are discussing the difficulties ad nauseam. I looked at LeGrices presentation as a warning - not a statement - and they are looking for other avenues. He is the head of the HIV COE program at the NCI; he is the one that asked researchers to provide every detail of their protocols to them. We've kind of decided that they think contamination is it - but they are pursuing other possibilities as well.
They are covering the topics at a high-level ad nauseam. The depth, more precisely the lack thereof, is what greatly concerns me.
We are in agreement Le Grice served up a warning. A statement would have been more acceptable. The effect appeared to be extremely polarizing which was unnecessary. He picked the single bullet point on many slides to cherry pick his argument and apparently used the fact that pre-publication data was unavailable and thereby used only negative information to harvest his negative talking points. Not to mention it’s possible one of Dr. Mikovits’ “rejected” papers may very well have been presented at the conference. I don’t like the picture this forms of what is going on. I’m not simply going to assume it’s all OK and that believe privately things are more collegial than what we see.
In order to do work in this controversial world you need top-cover (aka Godfather protection). Le Grice doesn’t appear to be neutral (I’m being kind) and Coffin has backed away. So who’s providing top-cover right now? Without Coffin and anyone with an accent - a la Stoye and Le Grice who does that leave really – Ruscetti? It
seems his top-cover is tenuous. Is he being frozen out of publication too? His remark at the Q&A about moving from detection to pathophysiology was very interesting. I think he was essential saying to the entire group, “If you people want to squabble over what we already know with a high degree of confidence, I’m moving on. I’m done trying to convince the stubborn”. But is HE being frozen out too? He was pretty clear discretionary funding would dry up soon.
There is the report from Judy Mokovits’ NJ CFS Conference that the NCI “has been told by someone high up in the government to pursue whether XMRV is involved in prostrate cancer but should distance themselves from CFS."
Well, observable NCI behavior would back that up at the moment. Ruscetti notwithstanding and he pushed off retirement to pursue this therefore he’s not really worried about keeping his job or future grants so he’s definitely not going to be pressured and may be staying in the game in part to help Mikovits.
My angel Ila Singh is able to proceed because she is so well established. If another outsider like the WPI somes along their chances of being able to publish are slim if Dr. Mikovits is stuffing papers in a drawer.
Alter is able to ride on his reputation, mostly. I do wonder if he hadn’t confirmed the leak of his impending publication and results if it might have disappeared. I may be in the minority in that view. One way or another he had to run a gauntlet that fairly unreasonable, at best.
There is no easy answer for any of this - sample preparation? The WPI found XMRV in samples prepared by some blood bank........the prostate clone? Not everyone used it and several studies failed to find conserved sequences for pMLV's as well - they looked for both. They should have at least been able to pick up conserved sequences that are variable that are found across all MLV's - but they didn't. For me this is nothing more than a mystery.
My memory is poor. What studies looked for pMLVs?
It's only when you actually find something that contamination becomes a possibility
Well McClure seemed to have found it in a negative study and is relentlessly pounding the Rumor Contamination drum.
I don't know why (or even if he is, according to Amy he is) but isn't this just how it works? The top names in any field lead the major efforts. They have earned others respect and they listen to them. According to Susan Vernon Ian Lipkin does by the way believe a pathogen is causing CFS and he is currently engaged in two studies on CFS. Dr. Montoya, a huge friend of CFS, was recently quoted as saying that Ian Lipkin would get to the bottom of the discrepancies. He's a huge name in pathogen detection - who else would rather want?
I’ll let you know after the study is done. :Retro smile: If he collaborates well (off to a good start it would appear) this very positive and I have some optimism here. But there are concerns like Lipkn’s publication Microbe Hunting where he states he’s against using “known positive” samples Note: I don’t have access to the publication (wish I did) and am quoting a quote but I have a high degree of confidence in the accuracy of the following.
Some key partners may suggest that it is easier to independently test samples previously found to be positive than to invest in a new sample collection. This path should be discouraged because it does not address issues of diagnostic stability, geographic or temporal bias, or sample contamination.
I hope Singh and/or others convince him otherwise. They can use her recommended method of direct phlebotomy draws to all participating labs, which I believe Amy Dockser Marcus has indicated he’s doing anyway so why not go after positives in this manner. Hopefully there are positive patients in the geographic regions used for the study. Does anyone know those locations?
