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Science asks authors to retract XMRV/CFS paper

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Nielk, May 30, 2011.

  1. Mark

    Mark Acting CEO

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    It's not even a "view": the money that has gone in to researching XMRV is not ME/CFS money, never was, and never would have been. It would not have been spent on the research you describe anyway. Research funding in general is not little, and it is available - it's just not available to us.

    If this were true, then there wouldn't be a problem in the first place, because money would have gone into those areas before XMRV was posited. It did not. Even the XMRV studies are a drop in the ocean compared to research into other conditions. There's no reason why XMRV research should be seen as a replacement for other research into ME/CFS. That hasn't been the reality. If research into XMRV stops, just watch the money pour in to fund other ME/CFS research - not.

    I can't see the comparison here. What have people shelled out on XMRV? 200 or so on a test - repeated for free when the testing procedure was refined - all the proceeds (after costs) going into a non-profit fund to support the WPI's research into ME/CFS. Other than that, what? Many are supporting the WPI with donations - just as they have in the past supported other research with donations, also with little to show for it as yet. Not the same thing as the stem cell example at all.

    I think when you draw these kind of comparisons you should step back and think about the actual money involved, and the actual constitution, personnel and mission of the WPI. Those sort of slurs were thrown around casually enough by Bad Scientists, we really don't need them from within our own ranks, and they are the sort of allegations that ought to be made with reference to numbers and facts, rather than in this vague sort of way. And the concept of a "scam" that wasn't originally intentional makes no sense at all to me: that's an inflammatory suggestion and a serious one, and you don't appear to have any evidence in support of it.
  2. jeffrez

    jeffrez Senior Member

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    Someone is getting paid. That's all I'm saying. Are you claiming WPI researchers, et al. are doing their work for free? That would be a surprise to me to hear.

    Money and funding are finite resources. I not only think that funding things like XMRV potentially can take away funding for other avenues of research, but that when big hoopla is made about something, like XMRV, and then it doesn't pan out, as XMRV is appearing not to, that then even hurts funding for other research in the future. No one wants to be associated with "another" ME/CFS research failure. The whole thing gives a bad rep that's hard to overcome in the scientific community. No one really wants to deal with it.
  3. Mark

    Mark Acting CEO

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    As it so happens, I have recently been informed that this is indeed the case, to some extent at least, so feel free to be surprised, but I'm afraid I don't think I can say any more about that subject now.

    Anyway, as far as the WPI are concerned, they have not been receiving any major grant funding in the last couple of years, they are a charitably-funded institute set up by the family of an ME/CFS patient, and their interest is in studying and solving neuro-immune disease. If you take a look at them, it just seems to me a laughable idea that they are making big bucks out of all this. I'm pretty confident that they aren't as well paid as many of the peers in their field, and they certainly aren't as secure in their careers - they are sticking their necks way out, and everything I see tells me that they are doing this in the interests of patients, not in the interests of financial gain.

    Of course, financial interests are there for all the players, but it's always interesting to me that the far more substantial financial interests of those working for state-funded organisations, and those well entrenched in the academic world, appear to receive far less scrutiny in these matters than the considerably poorer organisations like the WPI - I guess it's just a prejudice based on the fact that they're an independent institute and thus apparently 'private medicine', but when you look closer at it, this assessment of the relative financial interests seems like a nonsense to me. The idea that all the many doctors and researchers who are extremely highly paid to work in the public sector, in very secure jobs, are doing so out of altruism because they work in the state rather than the private sector, and therefore they're making some kind of noble (but highly lucrative) sacrifice...that sort of thinking is a pervasive myth IMO, because in reality many of the private physicians and independent researchers involved in ME/CFS are going way out on a limb for us when they have far more attractive career paths open to them. And as we know, without such people we would have absolutely nothing going on for us.


    If you could cite any XMRV study that was funded out of an ME/CFS pot, or any ME/CFS research budget that has had money allocated from it to the study of XMRV, then you might begin to have a point. I'm not aware of any such example though, unless you count the WPI's own donated money.

    As regards how it affects future research if something like XMRV fails to pan out, then I'm inclined to think that we really don't have very much to lose. It may be theoretically possible for ME/CFS research funding to get lower, but not by much. Again: the problem with research interest and research funding that you describe is the existing status quo before the arrival of the WPI, and it's hard to imagine that situation getting any worse. (That's the nice thing about this whole financial crisis: it doesn't seem to have touched us at all, because we don't have anything to cut in the first place - except for a load of money wasted on psychs, which would probably raise the biggest cheer of any budget cut going if it was all taken away).

    I do of course think it's a great, great shame (to put it very mildly) that some of the other excellent ME/CFS research doesn't get more attention, more press coverage, and more funding. I just don't think the WPI can be held responsible for that situation, and if they weren't here and XMRV hadn't happened, I don't think the situation for that other research would be any better for it. In fact, if you look at some of the people who have got involved in the ME/CFS research field in the last couple of years, the opposite seems to be the case. So how XMRV will affect ME/CFS research funding in the medium term remains to be seen...
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Right. Prof. Racianello's blogpost on May 5th on Ian Lipkin's comments have me doubting Lipkin's bona fides. Prof. R published written comments from Prof. Lipkin that the Singh and other negative paper didn't do anything but cause confusion and said we need a certain kind of experiment done to get definitive answers. He said again he's agnostic on XMRV. Then in the comments, Prof. R said that Lipkin told him that the Singh study was very clear to scientists and very strongly implied that what was clear was than Lombardi et al. was wrong.

    He's doing this study at the behest of Fauci with a lot of NIH funds. I don't trust Lipkin now.

    http://www.virology.ws/2011/05/06/ian-lipkin-on-xmrv/
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The call for retraction seems to be very inappropriate and aimed at crushing WPI and the HGRV hypothesis along with it.

    And why does Coffin and NCI get to say that their paper is definitive and the real story and that WPI's is not? Lombardi et al. is seen as doo-doo until such time as several labs are to find XMRV and jump through other hoops, but Coffin's paper is correct even though there has been no replication of it.

    Coffin's and his co-author's comments are way overreaching, just like Singh's. Not cool at all:

    http://www.eurekalert.org/pub_releases/2011-05/nci-oox053111.php
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree totally.
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Again, I agree. If this is what you consider a scam to make easy money, then WPI has found the world's hardest way to make an easy buck.
  8. Mark

    Mark Acting CEO

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    Thanks for highlighting that Justin. I was wanting to point that out myself but couldn't find the quote.

    It certainly appears that Lipkin's public comments and his private comments are very different. There seems to be enough evidence in Dr Racaniello's leak to suggest that if Dr R is being honest, then Dr Lipkin is somebody whose public comments are absolutely not to be trusted.

    This discrepancy between what scientists say in public and what they say in private does not seem to be at all unusual, however - and this is, of course, the reason for the distrust, paranoia, conspiracy theories and anger of the patient community that's often directed at scientists. If they can't or won't speak out honestly, then how are the patients supposed to know what to believe? If they discuss matters amongst themselves but won't share that information with the public, then why on earth do they expect to be trusted? The old world in which the professions could get on with things in private, release their results after discussion in a private gentleman's club, and expect blind faith from the general public, is long gone - science will have to adapt to this reality if it's to resolve this crisis of confidence.

    Personally, I lost faith in Lipkin quite a long time ago, and actually I forget the details why now, but I believe he made a promise to the patient community concerning the transparency and openness and involvement of patients and then held a secret meeting a few weeks later and failed to report back when he'd promised to do so. The revelation that it was he who ran the definitive studies that 'debunked' Wakefield's work was also worrying - especially since his interpretation of those findings seems rather curious to me.

    And when scientists say things like:

    "Taken together, these results essentially close the door on XMRV as a cause of human disease"

    then I'm inclined to agree with a recent analysis of Coffin as a man suffering some kind of hysterical nervous breakdown: this is wild, wild stuff, a powerful and unjustified 'closing of the door' indeed, going way, way beyond the evidence...and comments like these are exactly what I go by when I assess whether somebody's overall analysis can be considered objective.

    My sense is that as soon as there was evidence that XMRV was laboratory-created, that closed the door on the idea that it might cause human disease, as far as Coffin was concerned. The idea is so sickening that it's unthinkable - and thus, investigation of this novel laboratory-created human retrovirus must cease forthwith...
  9. Andrew

    Andrew Senior Member

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    Been thinking more. It's amazing that Science violated the embargo on these two upcoming studies when they prematurely indicated the direction of the results in their request for retraction.

    Some things are making me very nervous here. Could one of the two studies be the Lipkin study we have been waiting for? Or maybe one of the studies demonstrates (instead of suggests) contamination.

    Anyway, I guess I just don't understand the life sciences. I've done literature reviews on other topics where studies differ, and even if their is one loan study that's different, it's left to stand so people can review it indefinitely.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The two studies that Coffin is talking about, and I'm pretty sure Science is talking about are the ones that were published today (though Science said they were coming out June 2- I guess this is some sort of 'pre-publication)- Coffin's and Levy's.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Even if BWG's and Lipkin's studies come out positive, will WPI be able to generate sufficient cashflow to stay solvent until then?

    Oh no.... I just got a big sinking feeling. I don't know enough about Wakefield to really take a side, but the parallels between who has appointed themselves as arbiters of their merit (BMJ, Lipkin and CDC/NIH), and apparently how WPI and apparently Wakefield are being railroaded (according to people I trust) are making me feel like Lipkin is going to railroad WPI at Fauci's behest. Did Lipkin do the Wakefield study at Fauci's direction? If WPI gets screwed by Lipkin, we as pwME are in huge, huge, huge trouble. This also seeming more and more like the accusations against de Freitas about her supposed 'retrovirus caper.'
  12. currer

    currer Senior Member

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    QUOTE And when scientists say things like:

    "Taken together, these results essentially close the door on XMRV as a cause of human disease"

    then I'm inclined to agree with a recent analysis of Coffin as a man suffering some kind of hysterical nervous breakdown: this is wild, wild stuff, a powerful and unjustified 'closing of the door' indeed, going way, way beyond the evidence...and comments like these are exactly what I go by when I assess whether somebody's overall analysis can be considered objective.

    My sense is that as soon as there was evidence that XMRV was laboratory-created, that closed the door on the idea that it might cause human disease, as far as Coffin was concerned. The idea is so sickening that it's unthinkable - and thus, investigation of this novel laboratory-created human retrovirus must cease forthwith...[/QUOTE]

    I think this is a very convincing and worrying analysis Mark.

    If XMRV research is closed prematurely, as we can see that some powerful people would like to do, how many here would feel that they had been justly treated? When you think of the powerful interests that could be working together to put pressure on scientists to distort or suppress the scientific truth.

    I still wonder whether research might not be just as valid released on the web, for open criticism, instead of going through the private peer review it does before it can see the light of day. There are too many ways of blocking, suppressing, or re-directing contentious or damaging research as things are done now.

    I dont have much faith left in the scientific process after what I have seen in the last few weeks.
    If nothing else XMRV could be a public relations disaster for the governmenmtal agencies involved. Those who have followed the research - scientists and non scientists, will lose faith in the institutions that are supposed to work for them. Then other, better ways of working together will evolve that do not suppress intellectual freedom. Intellectual truth cannot be supressed and that society remain healthy. The best people will walk away from a society that lies or is senile and dying.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    currer, perhaps web self-publishing will what bona fide ME researchers will have to resort to. Which has serious practical problems, ie probably the vast majority of scientists, from what i can see, are hide-bound and irrationally wedded to the current publication system as the absolute arbiter of the worth of papers. Also, try getting a cite to a self-published paper on Wikipedia. It will be erased in literally 5 minutes.
  14. alex3619

    alex3619 Senior Member

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    Hi, my interpretation is that the only "further" evidence of merit that was presented in the two new Science studies is the confirmation that XMRV was not found in the earlier prostate tissue samples, but was found after multiple passaging.

    This is interesting but not proof of WPI contamination. If WPI were contaminated, I think it would be found again and again and again - and they have never found contamination at WPI. If it is contamination it is somehow new and different, and just learning why it happened would be helpful. I still think the contamination arguments are unlikely, and not just because it totally fails to explain the control data.

    Now I wonder if all the lab techs working on the prostate cancer cell lines have been tested for XMRV? If you want a source of contamination, I would start there. Just because XMRV might have been from recombination in the cell line development, does not mean it was. If we can find ancestral XMRV, and I think this has already been done many many times, what makes so many think that the cell line is responsible for contaminating WPI? The contamination arguments are much more flawed than the association argument from Lombardi et. al. Indeed Levy has worked on XMRV before, irrc. How can it be a recent development? Finding two ancestor viruses, if accurate, does not mean they definitely combined at a specific point in time, it is only strongly suggestive at best, and even weakly suggestive given the history of XMRV and related viruses.

    A new zero-zero study does not impress me. NONE of them explain the control data. It is evidence SOMETHING is wrong, but it does not conclusively show what is wrong - is it WPI, is it the PCR testing, are both wrong and something mysterious is going on? These are just speculations. It does mean there is a mystery that science has to unravel if we are to progress, but it does not tell us what the answer will be - no matter what answer anyone favours, including me, it is just informed opinion, not scientific fact. Scientific mysteries like this just beg for further research, both pro- and anti-hypothesis. This is not something we want to close down until it has been nailed down, superglued, cast in concrete and used to make a monument. It is not over till the science is done.

    There has been some speculation about Lipkin's views. I do not think we can hold it against Lipkin for making a private comment that contradicts his public statements. He has doubts. He should have doubts. The question is whether he is open to the scientific data, and I see no evidence he is not.

    I have no opinion on the Wakefield autism science that I would call strong, but do note that while they tried to shut the research down, interest still appears to continue in some scientific and medical circles, just at a low ebb. I cannot judge whether or not Lipkin treated this matter fairly as I do not have sufficient knowledge, and I would need to be part of a full investigation with official backing and research and funding before I could give an opinion.

    What I would like to say is that we should not be judging Lipkin without evidence. On the other hand it is right to question: questioning things is at the heart of science. Everything should be questioned until we can nail down an answer.

    Bye
    Alex
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    We don't know the whole story- we weren't there, we haven't heard Prof. Lipkin's side of things- but assuming for the sake of argument that what Dr. R said was accurate, why shouldn't we hold it against Lipkin? This wouldn't be just framing things in a certain ok way for PR purposes, it would be his lying that he is 'agnostic' about XMRV; that he has decided that it's clear Singh shows Lombardi et al. is wrong and is lying about it. I really don't understand why this shouldn't be held against him if true.
  16. alex3619

    alex3619 Senior Member

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    Hi justinreilly, I can clarify my position. We should not hold it against him for several reasons. First, it is premature. He might really be the one to definitively validate Lombardi et. al. I don't know that he wont - ask me again in a year and I will have a firm opinion.

    Second, I see such comments more as an alert to issues, but not evidence of unfair bias. It means we are alerted to a possible future problem.

    Third, I too have doubts about WPI and the Lombardi findings. I should have doubts. That does not stop me from having an opinion on the science that there is more than sufficient evidence for XMRV involvement to be researched in ME/CFS until we have near certainty. Personal doubts and professional opinion are and should be different. If you asked the pro-Lombardi researchers privately, I am reasonably certain that some of the researchers would have doubts, and would be working hard to improve the science. On the flip side, some of anti-Lombardi researchers would also have doubts. Doubts are normal, and it sounds to me like Lipkin might have thought it was off the record. Private doubts are very different from serious professional doubts, or serious professional claims.

    When someone makes hyperbolic claims in public on data that is public, and it is clearly unjustified, that is an entirely different story. Just look at many of the hyperbolic claims made in connection with the PACE trials. Alternatively, how can a request for retraction of the Lombardi paper by some at Science be considered logically defensible on scientific grounds? It is perhaps justifiable using political/journalistic arguments, but not scientific ones.

    This does not mean we should not question anybody's data, conclusions or reasoning. We should. We just don't have any of that yet from Lipkin. I am however disappointed (not surprised) that a potential end-date for the Lipkin study at the end of the year has been moved back to early next year. Delays can easily occur when you are co-ordinating so many labs.

    Bye
    Alex
  17. Hope123

    Hope123 Senior Member

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    What a day! Just a few quick comments:

    1. From looking at the Coffin abstract, the ideas are similar to what he talked about at NIH. And as many people probably remember, Coffin was not the coolest cat at that meeting. He left after the first day so it wasn't like people had the chance to ask him more questions. It was Harvey Alter who kept things on the up-and-up.

    2. Cort prob. knows this but as clarification, Dr. Kogelnik is no longer at Stanford but has his own clinic.

    3. The NY study by Hansen and Bell showing 70% XMRV+ in pts. vs. 20% in controls is still not out yet.

    4. I wonder if the Science call for retraction was a committee decision with some people not wanting retraction and others demanding it, resulting in a call for a "voluntary" retraction. Agree that is is just a really odd move in general without obvious evidence of fraud or intentional misleading.

    5. Scientists would like to think they are wholly objective. They are not and it's sad when some are blind even to their own prejudices and how it might influence their interpretation of evidence.
  18. Jemal

    Jemal Senior Member

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    I hope not, but that symposium is more a WPI event, it's not organised by the NCI. Ruscetti might be standing alone. It could even be his hands are now tied as the NCI is his employer. I am not sure how much scientific freedom he gets.

    We'll see how it goes... that latest press release from the NCI is not really hopeful though.
    Their XMRV page is not hopeful either:

    http://www.cancer.gov/newscenter/qa/2011/xmrv_qa?forumid=331851

  19. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The editors of Science did not break any embargo on their 'expression of concern'. Whatever the editors' motivation in publishing an expression of concern, they acted with professional courtesy in raising the issue with Lombardi et al, prior to the publication of two articles which are damning of Lombardi 2009, so giving the original authors the opportunity to withdraw their article with good grace. Lombardi et al declined to accept the offer of retraction which left the editors of Science little choice but to publish an expression of concern - the whole issue was then made public not in the measured terms of Science, but via what many in the research world will see as a WPI 'mouth piece'.

    If 'XMRV in blood' had panned out then WPI would have achieved a research coup, but it should have been obvious to everyone that a study which raises anxiety about blood safety and in consequence causes the redirection of large amounts of research effort, that does not 'pan out', will bring a a degree of opprobrium on the authors' heads. The smart thing for the WPI would have been to accept the offer of retraction, applaud the work of fellow researchers, and quietly move on to new projects. Instead they have tried playing a PR game, at which they are monstrously crap, and have ended up looking ridiculous in the eyes of the majority of their peers. Apart from the question of something in the region of a $1million spent by M.E/CFS affected people on blood tests that are meaningless, what should be of concern to all of 'us' is that the WPI has appropriated M.E/CFS as a banner item for justification of the WPI's own existence, and promptly associated M.E/CFS with research that many other medical scientists will view as being dubious. The WPI management may not have been able to persuade Lombardi et al to accept retraction, but if WPI believes that it is patients and not its own senior staff that matter most, then the WPI board would have publicly distanced itself from the continued standing of the 2009 article.

    IVI
  20. eric_s

    eric_s Senior Member

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    Now that was a comment... Congratulations, Mark!

    I don't buy any of the "it's not XMRV, but it might well be another virus, just let go now and we will look for it" line. Even now with XMRV the budget didn't substantially increase. Sure there was much more attention and many big names and institutions got involved, which is great, but moneywise i think we're still nowhere near where we should be, if we want to see progress. And we have a right to this. We are being discriminated, if you look at the funding available in contrast to the size of the problem.

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