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Nature: Spoonful of Medicine: There's no tiring of controversy in the XMRV-CFS link

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Firestormm, Oct 10, 2011.

  1. Firestormm

    Firestormm Guest

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    4 October 2011: http://blogs.nature.com/nm/spoonful/2011/10/theres_no_tiring_of_controvers.html

    'Its been a hectic couple of weeks for Judy Mikovits. First, her controversial research on the viral cause of chronic fatigue syndrome was condemned by the journal that published it.

    Then, her alternative hypothesis that a new gammaretrovirus closely related to the originally proposed culprit, xenotropic murine leukemia virus-related virus (XMRV), is responsible for chronic fatigue was received with misgivings by the scientific community at a major international conference.

    Add to the mix allegations of fabricated results and a blow-out with her boss, and Mikovits ended up being fired from her job at the Whittemore Peterson Institute (WPI) for Neuro-Immune Disease in Reno, Nevada.

    The research that spawned the drama was originally published in Science in October 2009, and purported to show a link between the infectious retrovirus XMRV and chronic fatigue syndrome in two-thirds of CFS patients examined.

    The study, conducted by Mikovits and her collaborators, was the first sign of an infectious cause for the disease. However, follow-up studies since 2009 showed that other labs could not reproduce these results and scientists began to suspect that Mikovits original patient samples had been contaminated.

    On 22 September, a large study published by Science showed that, of nine national laboratories, none could find XMRV in their patients blood including Mikovits own lab.

    Notably, Science issued a partial retraction of the original 2009 paper on the same day, stating that one of Mikovits collaborators had found XMRV contamination in the patient blood samples. The saga was documented in a long feature by Science, ending with Mikovits pledging to continue studying the CFS and its viral links.

    The next day, Mikovits presented the results of the latest study negating her research at a CFS conference in Ottawa, Canada, where she shared the podium with retrovirologist John Coffin of Tufts University in Boston, an opponent of her hypotheses.

    As a Science news article reported, Mikovits did not make a case for XMRV, admitting she may have been wrong about it. Instead, she proposed that CFS patients were infected with an XMRV-like virus from the gammaretrovirus family. Few at the meeting swallowed this alternative theory. As Swedish retrovirologist Jonas Blomberg told Science: Its like the argument follows the availability of the data.

    Another controversy that came out of the Ottawa meeting was more serious: the Chicago Tribune reported that Mikovits used a figure from her original paper in her Powerpoint presentation except it carried different labels and established proof of a different concept.

    The discrepancy was spotted by a graduate student from Oklahoma, who blogged about it on Friday. To assess if there had been figure manipulation, Sciences editors told the Tribune that they were investigating the allegations.


    The biggest consequence of this particular controversy, according to the Tribune, seems to have been Mikovits termination from her position as Director of Research at WPI. However, the Wall Street Journals Health Blog throws in another confounding factor into the events of last week a falling out between Mikovits and WPI President Annette Whittemore.

    The WSJ reported that Mikovits refused a direct request from Whittemore to turn over her patient samples to another scientist, leading to her termination from employment.

    The situation is currently at a stalemate, with the grant funding, provided by the US National Institutes of Health (NIH) hanging in the balance. The NIH has yet to decide whether Mikovits can take the money with her, or whether the WPI will continue to participate in the study, cutting Mikovits out of the story for good.

    Something tells me we havent reached the end of this chronic saga.'

    Another attempt at a summary. Full links are embedded in the article itself.
    barbc56 likes this.
  2. Wonko

    Wonko Senior Member

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    "As Swedish retrovirologist Jonas Blomberg told Science: Its like the argument follows the availability of the data."

    Maybe I've misunderstood but isn't this exactly how science is supposed to work? Have data, form hypothesis, do more experiments, get more data and update/revise hypothesis, continue until satisfied data matches hypothesis?
    leela, currer and justinreilly like this.
  3. Andrew

    Andrew Senior Member

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    I don't understand Blomberg either. It seems the theory should follow the data.

    Anyway, let's assume that Mikovits did not find XMRV, but instead, a different HGRV that she mistook for XMRV. And as far as we know, Silverman's study was contaminated with XMRV, and so this suggests that he never found XMRV in prostate tissue. What we don't know is whether this contamination is limited to Silverman. As far as Alter/Lo go, well, they didn't find XMRV. They found a different HGRV. And if this is correct, they were not contaminated with XMRV. But then again, didn't their BWG test not work out?

    I'll tell you one thing, I'd be very very disheartened were it not for that fact that some researchers are continuing with this, and that CFI was created.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree!

    ________________
  5. Firestormm

    Firestormm Guest

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    I think what he is saying is that when the data doesn't support the present argument the same data are being used to support another separate argument. So when XMRV was effectively ruled out Mikovits used the same data i.e. that Western Blot I suppose to support a whole different theory - to the extent that the labels were changed but the Western Blot was the same experiment. Or something.

    So: If Lombardi et al is now being shown not to support the 'XMRV' association with CFS - the same experiments are being manipulated to support a different theory (at least in terms of the Western Blot experiment with different labelling). At this point that is all it is of course - a theory. What is needed is a published paper - or rather that seems to be what is being called for i.e. HGRVs have an association with CFS or even a specific (identified) HGRV that has so far remained undiscovered.

    Lombardi tried to demonstrate an association with XMRV and CFS (68% of CFS patients' blood contained 'XMRV' or seemed to). Now - to validate the latest theory (from Ottawa) - the same or similar association must be demonstrated with HGRVs and a paper published. So in many respects it is back to square one.
    barbc56 and Sam Carter like this.
  6. currer

    currer Senior Member

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    It is normal in science to modify a theory to accomodate new findings.
    Theories are supposed to be progressively refined as new information comes to light.

    This is how scientific knowledge grows. Otherwise we would still be banging stones together.

    I have posted here before about the non-publication of positive research, Firestormm, I can personally vouch for Dr Bieger finding XMRV (HGRV) in 40% of his ME samples as this information was released at the Invest in ME conference and I was present.
    I am as interested as you in the question why these positive papers are not published.
    leela likes this.
  7. Esther12

    Esther12 Senior Member

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    I think that we might have strange expectations of science because of the psychogenic work around CFS. Lots of this work involves making predictions, testing them, showing that they are wrong, and then the new data is spun in a way that supports another psychogenic theory. It seems that no matter how wrong their initial claims were, theirs never a sense that they have a responsibility to accept that their fundamental assumption have misled them.

    It now seems very likely that the 2009 science paper is fundamentally flawed, and the claims made it in are wrong. Normally, scientists would expect the researchers to go back to the drawing board, and come up with some new data. There's a sense that Mikovits is trying to avoid the evidence which shows that the Science paper was wrong by trying to change the claims that were made in it as new evidence comes along. I think that's why Coffin seemed uninterested in engaging with the debate about HGRVs until Mikovits had gone back to get new data to support her new claims.

    ps: Ho ho ho - I get it. There's no tiring of the debate, even though CFS patients are really tired. How ironic! Ho ho ho - it's a chronic saga for scientists having to read about this controversy - just like the disability endured by CFS patients. The jokes just keep coming with CFS - they're irresistible.
    barbc56 and Sam Carter like this.
  8. Firestormm

    Firestormm Guest

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    I noted in the TWiV episode thread that Racaniello mentioned a new paper was imminent. Not sure if this was related to retroviruses and CFS or not though. I would also be interested to see what that particular paper turns out to be. Unless of course he was meaning this one:

    Xenotropic murine leukaemia virus-related virus (XMRV) does not cause chronic fatigue. '...Here, we present the evidence for our contention that XMRV is not a human pathogen...' http://www.cell.com/trends/microbiology/abstract/S0966-842X(11)00163-6# 5 October 2011.
    Sam Carter likes this.
  9. Wonko

    Wonko Senior Member

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    ah..yes..your right.....I got it the wrong way round....it should be "continue until hypothesis matches data"
  10. currer

    currer Senior Member

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    If you suppress data your hypothesis will be wrong.

    This is why I am so concerned by the difficulty, right from the beginning- of getting supporting papers published.

    Think what we might have learned from them.
  11. Andrew

    Andrew Senior Member

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    Okay, I see the point now. She is making claims about her study without backing them up with a paper for publication. So for a scientist, this could be seen as spinning the data. So what she would have to do is back it up with a study, not just speculation on a contaminated XMRV study.

    Makes sense. I hope she has the opportunity to adequately test her new theory.
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  12. Firestormm

    Firestormm Guest

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    I dare say the scientific answer to that Currer would be they weren't good enough to be published. But I know what you mean. Still not all theories can be turned into research papers can they? Some just don't stack up which is why a scientist should be careful about what they say they think might be forthcoming as a paper when they have no idea really if indeed it will. Bit like the aerosol issue etc.
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  13. currer

    currer Senior Member

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    The point I am making firestormm, is that we can never know. What you have said is an assumption, based on your trust in the good faith of the scientific establishment in allowing unpopular theories equal consideration.

    Maybe I am more cynical than you, but I dont see this, and I want to see the papers in print so that I can come to my own conclusions.

    Do you understand how disturbing to the scientific and medical establishment the retroviral findings in ME are?

    The real question underlying this debate is not -is there a mouse retrovirus associated with ME, but,- if there is a mouse retrovirus associated with ME how did it cross into the human population?

    It is on this basis that we see the different parties forming and advancing their arguments. Supporters of a dominant scientific theory frequently use tactics conflicting with expectations of proper scientific behaviour, such as denigrating the competing theory and its advocates, intimidating opponents, blocking publication of competing views in scientific journals, and the use of authority and official channels and the manipulation of public opinion to give a stamp of approval to the dominant view.
    Lou likes this.
  14. barbc56

    barbc56 Senior Member

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    You could contact the authors who wrote the "positive studies". I would think they could be found somewhere on the internet.

    Science journals go through a rigorous process before papers are published.

    At the time the Science paper was published, many questioned the validity of the study. That bad is on the Science Journal and may result in their credibility to fall.

    The other questionable methods by Mikovitz et. al. are their bad. Basically, they spiked the punch without telling anyone.

    Scientific research doesn't always pan out the way we want it to. There are just too many studies out there that show the original paper could not be validated. Some of these studies even used the WPI's methods or what was thought to be the WPI's methods.
  15. currer

    currer Senior Member

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    QUOTE The other questionable methods by Mikovitz et. al. are their bad. Basically, they spiked the punch without telling anyone.QUOTE

    Interesting....I was just writing about denigration as a method of devaluing competing theories
    Lou likes this.
  16. Angela Kennedy

    Angela Kennedy *****

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    Currer said:

    Excelllently put currer. This is well known in academic circles. People would do well to understand this - those that don't already (ironically, many 'lay' people in this community have understood this for years).
  17. Angela Kennedy

    Angela Kennedy *****

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    If it's being done here (which it is), imagine that happening all over the fields of science, social science etc. Because that is what happens.
  18. Bob

    Bob

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    Interesting points currer. When you highlight what is going on like that, it does make me wonder how so many people can attack the WPI so easily, but are blind to the inappropriate behaviour of so many of the other scientists involved in this saga. We have even got to the point now where patients are being blamed for researchers pulling out of ME research. This is nonsense of course, because they were never involved in ME research in the first place, but it does turn patients against each other and against anyone who is doing XMRV research. I can only assume that is what they want to achieve because i can't see any other reason for attacking patients.
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  19. Bob

    Bob

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    And do we remember what they were saying about the study when they questioned its validity?

    First it was said that there was no virus, but it was just mouse DNA contamination that they were detecting.
    Then they said it was contamination from an existing mouse virus and it wasn't XMRV.
    Then they said it was XMRV but XMRV was not a human virus.
    Then they discovered that XMRV was a novel virus that infects human cell line tissue.

    So even if the Science study was contaminated, the reasons for it being questioned in the first place were all invalid, because it turns out in the end that XMRV is indeed a novel retrovirus that infects human tissue. None of the detractors knew this, and none of them said anything about this.

    So who was incorrect? Judy Mikovits, or those who said that XMRV did not exist or was not a novel human virus?

    So why the negative focus on Judy Mikovits who has done such a great deal to advance the knowledge surrounding this novel retrovirus?


    Interestingly, Dr Singh found XMRV in about 5% of the normal population in her tissue study, but was unable to detect any XMRV in her blood study. She has stated that she is unable to explain the differences. Although there are apparent discrepancies between the results of her different studies, Singh still felt able to declare, categorically, that XMRV does not exist in ME patients even though she does not understand her own results. This, apparently, is OK for everyone, and is good science at work.

    Although Dr Singh's work confirmed the WPI's work, with respect to the normal population, I don't see anyone accusing her of fraud or of sloppiness or whatever.

    Switzer of the CDC has also detected XMRV in humans, and declared that XMRV is a novel human retrovirus, but I don't see anyone attacking him either.

    It appears that all of the malicious attacks on the blogs etc., have been saved for JM.

    I understand that some people feel bitter towards the WPI, and that's fine, but at least have some consistency, please.
  20. Firestormm

    Firestormm Guest

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    Evening Bob,

    This was linked before on here somewhere: http://cfs-facts.blogspot.com/2010/02/xmrv-discussion-on-faculty-of-1000.html You will actually read (as I have) just how many scientists were excited by the initial paper from Lombardi et al. I recall even Coffin being so too.

    Of course (and Moore was again quoted in the 'False Positive' Science piece recently) that was until Patrick Moore and Masahiro Shuda critiqued the methodology and had a debate with Judy Mikovits about it on F1000.

    I wasn't aware of any of this to be honest. Until I read the links. Moore did post on ERV a couple of times about the paper I recall too.

    N.B. Of course my link doesn't reflect ALL the views at the time but still I was surprised to read some of them.

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