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Article: The Singh XMRV Study Strikes Out

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 5, 2011.

  1. Krizani

    Krizani

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    There are lots of things wrong with this study, more than the quote above, though that certainly counts and is central to my criticism.

    Did Singh actually prove that she could even detect XMRV in a bona fide CFS patient to begin with? I wonder. That, to me, should be a fundamental requirement BEFORE funding a study for Pete's sake. That makes me wonder about the folks that funded this flawed study as a reflection of these results. Who would such underwriters serve with this as their results? Not me.

    She proved that she could detect a contaminant a small percentage of the time. What does that have to do with the discussion at hand? The "conclusions" drawn rest on really flimsy and, to my mind, unscientific thinking. A la the "feeling" remark. Well I have some feelings about this whole debacle, not just this one study but the parade of negative studies since the Science paper that I will touch on below.

    This whole thing smells to high heaven of exactly the same politics that sank the DeFreitas study way back in the early 90's. And with the same players no less. What is that quote about learning and paying attention to your history so as not to repeat it?

    This drum roll of negative studies sounds pretty much the same to my ears. If and when anyone actually stands up and actually REPLICATES the WPI study, then I'll pay attention.

    In the meantime it's the same old, same old and frankly I'm more than a little sick of reading about all the maneuvering with this thing. It just stinks of politics and character assassination. It may be taking place in the arena of "science" but it appears that very little true science is being done, and what science is being done is in service to other agendas.

    I'm sure I'm not the only person that has noticed what I mentioned above. Are we supposed to sit on our hands and be nice just because anything is being done? We have some brilliant minds in the patient population and a deep resource in the doctors who have continued to risk their medical political reputations, not to mention their personal reputations to treat sufferers with compassion. Why then, aren't these resources being treated with respect, at long last, and utilized in order to avoid reinventing the wheel? That is a huge squandering of potential, and truthfully, the lives of many who have and continue to suffer.

    There's nothing like enduring this horrible illness only to be used as cannon fodder for the money guys who don't want us peeking behind the curtain - just like it was 30 YEARS ago. I'm tired of being treated like an issue, a cohort, a subject, a nuisance. I'm a suffering human being, with dignity and compassion. My main request is to be treated in kind.
  2. ixchelkali

    ixchelkali Senior Member

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    Could it be a non-xenotropic murine retrovirus, or an endogenous human retrovirus? I don't know, I'm wondering, too.

    In the explanatory material for the WPI study that was published later, they said that the samples were blinded, so they wouldn't have known if a negative sample was a control or a patient and they should have treated the same. And yes, Judy Mikovits did say that they sometimes had to test samples more than once, using different methods, to get a positive.
  3. Cort

    Cort Phoenix Rising Founder

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    Every study has to show that they can detect XMRV. Unless you have a person proven to have XMRV then you don't have the basis for showing that you can detect it in humans and the whole problem has been proving somebody has XMRV. That would require validation by several laboratories and as yet that has not happened. a

    If you think Dr. Singh - a retrovirologist who was actually studying XMRV in prostate cancer before she studied it in CFS - is playing politics please give some facts that back up that assertion. DeFreitas finding was studied by the CDC, at least two diagnostic labs, and Dr. Levy (and I'm sure some others)...Over 20 labs have published papers on XMRV and that doesn't count non-published lab work or the outstanding studies. The degree of work on XMRV is magnitudes larger than that done on De Frietas.

    I'm not sure what you mean by replicating but if you read the other comments you'll see that Singh did replicate the culture study and used the same assays as the original paper did.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    There is a very important difference between 'feeling' and 'finding.' This headline is unwarranted.

    You feel that XMRV in the blood is associated with ME, but you think that the headline of "XMRV is unassociated with CFS" is valid?

    As mojoey said, you are conflating two issues. WPI is saying it is in the blood; but they could be wrong. Even if they are wrong, there is good reason to believe it may be present in tissues, but not in blood (the monkey study and Singh's own prostate cancer study- finding it in tissue controls).
  5. Krizani

    Krizani

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    All the negative studies are playing politics. Just think a little about what is at stake here. If these guys can prove that the WPI study is wrong, well, they can then have a little race to the wire with who WILL find it and then you're looking at patents and drugs and research money.

    The whole field of medical research is one of the most cut-throat political arenas out there, right along with the academic side of things. To not see that is to be truly attached to your rose colored glasses.

    I'm sure that individuals that do this work have altruistic intentions at least part of the time but the whole thing is driven by the great god money and its handmaiden academic recognition. Who in these fields don't dream of the Nobel prize, for example? It's beyond competitive and very nasty the further "up" the food chain you go.

    Just because someone is a retrovirologist doesn't mean they're some version of a beneficent god smiling on us from behind the goggles and holding up a test tube.

    As for what happened to the DeFreitas study, have another peek at the meticulous history taken by Hillary Johnson in Osler's Web. It's quite enlightening in regards to what is happening now. Only some of the names have changed, certainly not the methods.

    And by replicate I mean REPLICATE. That means full and total adherence to the methods and protocols done in the first study. That means cooperation, FULL cooperation and transparency with the original study members and labs. Period. This has NOT been done yet to my understanding.

    Everyone so far has had their own methods, reagents, etc. Not one study has actually troubled themselves to rigorously, humbly avail themselves of the opportunity to actually, fully REPLICATE.

    The stakes are high - for a little idea of how high have a look at the vast money and resources garnered by the HIV research and drug sales folks. There are arguably more people with CFS than HIV so do the math.
  6. Navid

    Navid Senior Member

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    Krizani: Excellent post...thank you for your eloquence and clarity.
  7. JohnnyD

    JohnnyD Senior Member

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    I agree Krizani - excellent post -- one of the best and most concise reflections I've seen.
  8. kurt

    kurt Senior Member

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    I really disagree with the idea that these studies are playing politics. This is science, they don't 'vote' for their results, they measure them. Yes, a few of the negative studies involved researchers involved in ME/CFS politics but for the most parts the studies have been been sincere efforts to help CFS patients. But I agree the stakes are high, the incentive to find XMRV is huge for everyone, including WPI. Strong enough for WPI to keep promoting XMRV even when the evidence is now so strongly against their theory that many journals are not interested in publishing more CFS XMRV studies, positive or negative.

    There is no rational incentive for any of the labs to not find XMRV. There might be conspiracies against CFS patients in some areas, perhaps the insurance industry and a few government agencies have in the past sought to down-play the seriousness of CFS. But given the market size for any product that could successfully treat CFS, there is incentive for ALL of the labs to find something, anything at all that they can prove.

    Based on published research now, XMRV is most likely a complicated contamination event. People can accept or reject that, but it is the emerging scientific consensus.

    I think the sooner we collectively get back to basics and demand the fundamental type of research needed for CFS (starting from square one, the 'flu-like illness' and other triggers and what they can do to a person with CFS preconditions), the sooner we will get on track to really solve CFS.
  9. Krizani

    Krizani

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    What evidence? Without true replication (I'll refrain from shouting this time /grin) any conclusions don't truly reflect on the original study - that's science.

    The negative studies have proved they can't yet replicate the WPI studies. They can find contamination - sometimes. They've proved they can't find XMRV very well if at all. They aren't even addressing the issue that the XMRV that is found in humans will NOT infect mice so it's a HUMAN retrovirus now, regardless of its origins. Plus no one has talked about the idea that it's not a static target, except perhaps for the Lo study. That's it.

    Science exists in a context, not in some idealistic vacuum of objectivity. The researchers are people in groups that act like people in groups, i.e. politically. Those political groups (add in the context of existing in academia) are often largely dependent on government funds and there you have it. You can't have research without money, period. So that brings us back to politics, like it or not.

    In my opinion we ARE on track to solve CFS. Good grief, this pathogen being found is the huge trigger that fired off this spate of research to begin with after so many, many fallow years of suffering. It's all this snarling wrangling that's pulling focus and making the actual useful research so difficult to do.

    I think things would look very, very different if all this focus on DISproving the Science study were a focus on PROVING it and moving forward to alleviate the horrendous human cost of this illness. It looks more and more to me like the Science study bumped into something someone has a vested interest in keeping quiet. "The lady doth protest too much, methinks."

    A way forward is finally, finally in our hands. I pray that a way isn't found to snatch it away.

    It's back to follow the money - it's fundamental to the whole question.

    Edit: Have a peek at an insider's opinion on this http://treatingxmrv.blogspot.com/
  10. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Perhaps this has been mentioned elsewhere on another thread, but please check out Dr. Deckoff-Jones' comments on the Singh study.

    treatingxmrv.blogspot.com
  11. mojoey

    mojoey Senior Member

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    Several pharmaceutical companies have actually said they won't put more money into this until institutional research figures this out. So that basically puts to rest that all the economic incentives are there for the private market to see this through. Why would they want to spend a dime on R&D on a new bug themselves when the government is willing to foot the bill?

    As for institutional research being unbiased and there being no rational incentive for labs not to find it, would this apply to Cooperative Diagnostics? Well, I think you'd be right if the lab you're talking about has no political connection with the CDC, the main institution that you described as "down-playing the seriousness of CFS".

    Now if we're talking about rational incentives for academic researchers not to find it, we're talking about 1) grant money 2) patents 3) and other more qualitative factors like careers, egos, and reputations. In other words Kurt: name me one field in the history of the world which has these factors at play that should always be given the benefit of the doubt to provide unbiased results.
  12. maryb

    maryb iherb code TAK122

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    Me too - thank you so much a pleasure to read.
  13. asleep

    asleep Senior Member

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    Excellent posts Krizani!

    In case you are new to this forum, I will fill you in on a little secret. The purpose of this forum is not to engage and promote honest discussion about XMRV. In fact, it is is quite the opposite! This forum serves primarily to manufacture a picture of consensus and certainty that XMRV is dead and that it is time to move on.

    Cort and Kurt are the gatekeepers of this illusion and serve to promote the interests of the CAA/CDC by trying to prematurely steer the ME/CFS community past XMRV.

    The truth of this is readily transparent if one observes a few basic facts:
    1. Any post that is pro-XMRV or XMRV-agnostic or attempts to demonstrate flaws in the negative studies will always and immediately be followed by a post from Cort and/or Kurt that tries to undermine it, not address it.
    2. Despite personal assurances from Cort/Kurt to the contrary, their posts are consistently riddled with fallacious arguments, unsubstantiated assertions (e.g Kurt's claiming to know what "scientific consensus" is or what everyone's intentions are), opinions dressed as fact (Kurt: "Based on published research now, XMRV is most likely a complicated contamination event"), vague allusions to insider knowledge, etc. They rarely address the points made in the original post (and when they do it is with bald assertions, illogical arguments, gut feelings, or false "evidence" conveniently "misremembered" or "misunderstood"). Rather, they attempt to deflect or emotionally bully people away from supporting a fair trial for XMRV.
    3. These posts have time and time again been demonstrated by many to be flawed and diversionary for the reasons I touched upon and more. But these criticisms, if ever acknowledged, are never heeded and the onslaught of these posts proceeds unabated.
    4. These posts inevitably revolve around one or more of the following anti-XMRV talking points:
      • Anything but XMRV (e.g. "ME/CFS might be caused by a (retro)virus, but it is certainly NOT XMRV"). In essence, it's not the man behind the curtain so please stop looking in that direction.
      • The researchers of negative study X have no reason not to find XMRV (assertion, not fact).
      • The researchers of negative study X are of the highest caliber and should have found XMRV if it was there (assertion, not fact).
      • XMRV is easy to find and should be found with any methods researchers want to use (assertion, not fact).
      • Negative study X was a "replication" study (none of the negative studies to date have duplicated the WPI's methods, including Singh's study, and therefore are not replication studies).
      • True replication isn't necessary to disprove XMRV association (simply false and dangerously unscientific).
      • Reports of improvements on ARVs are irrelevant because they are anecdotes and probably due to the placebo effect (in any other context these anecdotes would at least be considered worthy of preliminary exploration).
      • Unsupported insinuations about the original Science study: e.g. speculation on how contamination occurred w/o any direct evidence and in spite of it being partially blinded.
      • Conspicuous omission of any discussion of Lo/Alter. If pressed on the issue, the study will be immediately dismissed as "not a replication". It is certainly not acceptable to propose that it is actually a validating study. It's interesting that, in this context, people all of a sudden remember what a replication study is!
      • Various non-sequiturs based on false premises: e.g. "There are plenty of other promising lines of research" (implies the false premise that XMRV is over), or "XMRV did bring lots of attention to the disease" (again implies false premise that XMRV is over and gives the appearance of having been objective about it), or "Will these researchers continue to study ME/CFS after XMRV?" (again, false premise and feigned objectivity).
      • (Probably others I'm forgetting)
    5. Together, these talking points are used to illogically justify a premature and unscientific dismissal of XMRV based on insufficient and poorly designed research. For added effect, it is often made clear that questioning these talking points is "conspiracy theory" or "inappropriately divisive" or "disrespectful" or some other form of intimidation. You are advised to sit down, be quiet, stop asking questions!, and let the CAA guide you through many more decades of murky nonsense.
  14. Kina

    Kina Moderation Team Lead

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    Asleep -- why come to a forum you seem to despise so much. I don't see anywhere that an open discussion of XMRV is not allowed by Cort or Kurt. People here can think for themselves and they do. For a few minutes, I honestly thought I was reading a post on that other forum. :confused:
  15. asleep

    asleep Senior Member

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    Because I still love you kjm and I'm trying to get just a taste of that beautiful spark we once shared.

    I guess you weren't around about a year ago when a bunch of people were banned for standing up to Cort and Kurt for many of the things I outlined above. This banning has stopped (too heavy-handed and transparent), and the current tactic is to spin and distort everything.

    The entire reason the "other" forum exists is because of what I outlined above (and because of the banning).

    I agree that that discussion is more "open" now in that you won't get banned. But certain discussion will trigger a slew of misinformation and people crying victim.

    I wasn't trying to imply that they couldn't. From my own experience, it took a while to realize what was going on, and I consider myself an independent thinker.

    No worries. I can see how you might be confused given your penchant for scouring the "other" forum for quotes of mine in an attempt to demonize me here.
  16. kurt

    kurt Senior Member

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    The primary reason anyone is banned from this forum is for insulting other forum members. Please talk about ideas and not people, and do not throw around insults. That might be alright on other forums but not here. We have a lot of very sensitive forum members.

    To my knowledge, nobody has ever been banned from this forum for their views, only for mistreatment of other forum members or for flaming moderators when they try to enforce forum rules.

    One other point, there is no 'protected viewpoint' here, of XMRV or anything else. If someone is disagreeing with you that simply means they have a different view of the situation. Please respect their view the same as you would like your view to be respected.
  17. Krizani

    Krizani

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    Thank you so much, asleep.

    You make points about things that I have made note of in my lurking here (I do check in daily). Yours is a very cogent and detailed post; I don't think you missed a thing that I also have noticed over time. All of these things keep popping up in various venues, but this is one in which I can exercise my voice and I finally chose to do so - and thank you for doing the same. It's so important!

    It's also important to note, I think, that our posts aren't personal and are in fact using a crucial skill: critical thinking. I think of it as being present and awake. I feel it is far more important to be in alignment than in agreement. Requiring that everyone agree seems to sink things to the lowest common denominator at which point the baby is often thrown out with the bathwater.

    I keep coming here in spite of, or even because of all of the above because it's part of keeping track of the whole picture in which the things we may not agree with are sometimes the most important part. It's about keeping a finger on the pulse of the whole issue and forming an idea of context. It is from context that opinions and realities are formed, their bedrock in a way.

    I'm grateful that my little plunge into things feet first elicited such a wonderful response. It feels good to know there are folks out there to link hands and minds with. I'm glad to have a place to use my voice as well.

    /high five
  18. Kina

    Kina Moderation Team Lead

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    Asleep. You don't me, so ya can't love me. I have been reading posts on this forum for quite a few years. I see where people get banned for being rude but not for offering an opinion. I do remember a whole bunch of posters purposefully being rude to get banned but that's old history. There is a huge difference between offering an opinion politely and offering an opinion rudely.

    I don't see any spinning or distortion from the people you named. I don't think Cort or Kurt have any hidden agenda == I think Cort does a good job of presenting the information without any bias.

    I don't scour the other forum for your quotes. I read the other forum to try to make sense of the information as well as reading blogs by virologists and other research websites.

    It seems that unless a person is one hundred percent for XMRV then they are suspect. Well, the reality is, research has not provided any conclusive answers, some people are convinced XMRV is the cause, others are convinced it is not, and others are on the fence waiting for more research. Each of these opinions should be respected and whatever a person believes does not mean they are a terrible evil person with some agenda. Yet, you state that people who are not 100 percent believers are purveyors of dishonesty. If a person believes in God and you don't, are all the believers dishonest? I believe, Cort and Kurt, are waiting for more research like many of us.

    I am just wondering why you spend so much time on a forum you don't agree with and you obviously find the information posted distasteful. Just seems odd to me.

    I, actually, prefer to read all views, no just a one sided view.

    To be honest, I find your comments to be disrespectful, not only to Cort and Kurt, but to members who enjoy and value this forum.
  19. mellster

    mellster Marco

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    Why does it have to be one virus? Many CFS patients test positive for EBV and EBV is one of the recognized causes, there might be other causes for others like XMRV. Any virus/environmental pathogens that can throw your immune system into overdrive/disarray could cause CFS-like systemic conditions. That's why it is so important to thoroughly test every patient and develop individual treatment plans. I don't think XMRV is dead, but it's probably not more important than the already known viruses. By the way personally I think CMV and coxsackie virus could very well be on the forefront as well - thought those are not mentioned very often, not sure why. And let's not forget vaccines, I think if somebody is a strong believer in a virus as a cause they should be open to vaccines as causes as well (e.g. Hep B.).
  20. ixchelkali

    ixchelkali Senior Member

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    :thumbsup: Comments like this make me wish we had a "like" button on the forum.

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