Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 13, 2010.
You can view the page at http://www.forums.aboutmecfs.org/content.php?102-WPI-Throws-the-Glove-Down
"We should be clear that the fact that the WPI found XMRV and the other labs didn’t doesn't mean that the WPI’s results are the correct ones."
Yeah, like the Cleveland Clinic and the National Cancer Institute?!?
Why is it that you 'forget' that WPI was one of three labs in the Science study?
Are you trying to dredge up a 'contamination' theory again?!? We are past that now clearly.
McClure's 'ball' has gone flat.
If I was trying to dredge up the contamination theory again I would have dredged it up. I did note that the weight of the evidence was in the WPI's favor. Until the situation is sorted out, though, and other labs publish studies showing XMRV is present, I'm going to let the scientific process work. You, of course, are welcome to use the 'belief process' as you wish.
V e e e e r y interesting. Love the picture!
We are welcome to use the "belief process" if we wish?
This is what I see.
WPI asked for collaboration of the Cleveland Clinic and NCI, and the best researchers in the world (according to Dr. Mikovits), then confirmed their data.
Science required them to check and recheck their findings before they published it.
No cancer researchers are questioning their results.
No virologists are questioning their results.
No immunologists are questioning their results.
Japanese researchers found XMRV in blood samples.
It has been confirmed by outside sources that it is not a lab contaminant.
Our best ME/CFS doctors Peterson, Cheney, Klimas, Bell are not disputing WPI's findings nor doubting it.
The ONLY negative studies have come from groups with an invested interest in NOT finding a connection between XMRV and ME/CFS, who used inappropriate cohort selection (and apparently lab technique), and who then rushed their studies into print.
I'll keep believing, Cort, along with all these others. Keep the faith, ya all.
I don't use 'weight' or belief; I review the established relevant facts.
You, of course, are free to ignore them like Groom, Kuppenfeld, McCleary, and Vernon.
Thanks for summing up the evidence, Gracenote. It seems so straight forward to me.
It is what it is. If we find out it's something else, I'll be surprised and then I will carry on.
But now, going by the evidence, it is what it is.
I have to say that this one line confused me a bit too, Cort. Probably just a problem with phrasing though. The way I'm reading it, it seems to be saying that the WPI could be wrong that what they found in CFS patients' blood was XMRV. They can't have found nothing, of course. So if they didn't find XMRV, the only possibility is some kind of contamination (I suppose the contaminant could have been XMRV that was hanging out in at least the WPI lab. But again, this really seems to have been ruled out.)
Well, Koan, I'm certainly open to being corrected.
Listing all of the above felt a little daring for me, but also a little fun. I'm not often so bold, but I just can't help thinking that there's a tad more weight on the side of WPI then on those three rushed studies that just happen to be by people with an invested interest in ME/CFS being a psychological syndrome. I'm not about to accuse anybody of anything . . .
Maybe a post like that will follow. One never knows.
I don't understand why anyone would accuse Cort of trying to cast doubt on the work of the WPI based on the article above.
This observation is correct until WPI's work is replicated by another lab. Everyone is free to draw their own conclusions at any time they want, but that's not going to get more research funded. Scientists working without preconceptions about the results of the tests they are performing replicating WPI's work will get new research funded. That's just the way research works. Don't blame Cort for that.
This is the best site I know of for getting all the news on XMRV. Accusing Cort of trying to misinform about XMRV is just crazy.
Glad to have discovered this forum. I am in the UK, have had ME for 27 years. The lack of clarity over XMRV is frustrating and it is hard not to be suspicious of Imperial College given its 'credentials'. Still, I have no idea if XMRV plays a part in my illness - triggered by Coxsackie B4 in 1983 - I very much welcome this proposal from Annette Whittemore. Science - and integrity - will, in the end, find the way.
Like nasim, I am a UK newcomer to this site and am very impressed with the contents, even if I cannot grasp very well (yet):Retro smile:the science. I'm sure that re-reading over a period of time will help.
Keep up the invaluable work.
XMRV STUDIES: SCOREBOARD
Positive findings = 1
Negative findings = 3
Those are the numbers right now. It seems the WPI had to through a lot of hoops to get positive readings for XMRV. So now they need to "teach" other labs? (I find the notion that the other labs don't want to find XMRV difficult to believe). Well, by the time all this education is finished, and they finally can prduce a reliable, insurance paid test, many here will probably be, say, 65? When will effective, insurance paid treatment be available? One can only guess.
So, for future generations, I really hope this turns out to be the answer. But for myself, I'll believe it when I see patients, at long last, revocering.
Egos in the way
This is all egos.
How insulting to McClure, a retrovirologist in her own right, to have to be taught how to find this virus.
Then exposed for giving misinformation.
The other two who are giving same results are exposed for.... arrogantly..... not using the offered blood samples from WPI.
It is like WPI, a brand new research lab is saying, "Here, let me show you how to do this."
So the others think, how arrogant of them. And yet they are the ones acting arrogantly.
Reminds me of my gymnastics days. I was a pretty good gymnast in my youth. Best in my grade in my school. But then, I went into Jr. High. And there was another girl older than me. We were now both on the team. And she had held the honored position of best. She did all the stunts that left the rest of the team in awe.
The other girl did feel threatened. Let's just say, we were not pals. Well, the other girls on the team got into this competition thing between us and urged us into a handspring duel one afternoon: which girl could do the most handsprings in a row. I don't even remember who won. But I do remember we both really didn't want to do it. I could see it on her face, she did not want to do this. It was as though this had gone too far. But we were egged on by the other girls and both of us had the unspoken "I'm better than her" feeling.
All of this while we are supposed to be on the same team, helping each other to beat other teams. I don't know if it relates exactly. But this whole thing between McClure and Whittemore's reminded me of that.
It's all ego.
Facts not wishful thinking
I agree with Cort - people are reading into this. Cort does an excellent job of presenting the science. And science is what it is. As Ms. Whittemore notes in her letter - they have found what they believe to be an association between XMRV and CFS. Association is not causation. It doesn't mean XMRV doesn't cause CFS, but it doesn't mean it does either.
Good science is not abracadabra presto chango. It takes time, money and many research studies - some of which will be negative depending on the variables taken into consideration or not. That is science not prejudice.
At this point in time there is no objective scientific evidence that XMRV causes any disease at all. Facts are facts and wishing won't change them.
Yes everyone is defensive - they need to get over it. The clinicians who joined up with psychiatrists were most likely unaware of the full facts involved in the controversy before they leapt into the frying pan. And without having full access to the emails and other forms of communication it is only speculation as to what really happened. Each side tells a different story and there is no reason to obvious reason to disbelieve any of the retrovirologists - all of whom are well known in their respective field. (That said - the psychiatrists are most likely a completely different story.)
If these were your kids they would all most likely be sitting on chairs in separate rooms until civility and cooperation could be restored.
What I was trying to say - perhaps not very well - is that while I believe that the bulk of the evidence is on the WPI's side in the context of the research community - which is the community that really matters - that belief doesn't really mean anything. To put it bluntly any one study doesn't mean anything in the scientific community until its replicated or validated. One positive study is a hypothesis...two or more positive studies begin to be a reality. This is almost a logical argument; until the Science papers results are replicated - you can't say they are true. Since they haven't been replicated yet - proved correct - logically they could be wrong.
Actually we have at least 20 studies going on that are 'questioning' or attempting to validate the WPI's original results. They're not trying to figure out if XMRV causes CFS or what it does in the body - they're all trying to see if XMRV is actually there. They wouldn't go to all that time and money and trouble if simply believing the WPI was right was sufficient - they have to go out and prove it.
I think you're right Kelly - off to your rooms researchers!
The WPI apparently feels they were done wrong - they entered into a relationship with these groups -and then the groups turned their back on them - so much for trust and communication.
What I suspect, since this is a very bold move, is that the WPI has gathered more positive evidence on their side and they're feeling very good about XMRV. They don't need to do this -XMRV will be proved with or without this exercise - but they felt they were publicly dissed by Dr. McClure (I remember a 'what we need is 'good science' (next time)' remark at the end of her essay :innocent1::innocent1: and they're giving some in return.
How delicious as well to maneuver this so that the center of the CBT movement is the one that validates the WPI's results? Its a very clever move - either Imperial College looks scared and lacking in integrity - if they don't agree - or if they do agree (and the test goes well) - they are the ones that begin to invalidate their whole school of thought!
If you want to start to take down that school of thought - its a brilliant move. XMRV is a ticking time bomb thrown straight into the CBT camp.
I don't think WPI feels they need more on their side.
They see it. CC sees it. NCI sees it. If others want to question and check up on them for their own knowledge, fine. Whittemore paraphrased: "Go ahead, we have nothing to fear. But don't be claiming we are wrong when you didn't do it right. As for us, we have moved into other research of prevalence, drugs, other illnesses, etc. And, by the way, we are doing our own XMRV in CFS research in UK since you guys can't seem to get it right."
WPI has no doubt and does not feel the need for validation of their claims, CC and NCI already does that.
So I don't know if this statement reflects more unpublished evidence causing confidence. I see WPI being confident from point of publication (October 2009) forward. It's everyone else that is questioning their results.
I think this is less about egos, and more about politics and money research money.
Dr. Mikovits says they are "attempting to isolate and sequence XMRV from as many people as possible" and that it's costly, around $2500 per isolate. They had a donor who promised to pay for this who then backed out. She says WPI hasn't been able to get funding "because of the efforts worldwide to make certain that XMRV has nothing to do with CFS." [from a personal email]
You can get research $$ if you're looking at a prostate cancer patient and XMRV.
You can get millions of research $$ if you want to look at the immune response to XMRV in monkeys.
You can get NO research $$ to study XMRV in patients with ME/CFS.
In my opinion, it's politics. Specifically politics that does not want there to be a connection between XMRV and ME/CFS. Just look at who the players are! That's what I see anyway.
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