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Article: The XMRV Files: The Mystery Continues

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 14, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. parvofighter

    parvofighter Senior Member

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    Required reading: XMRV the Virus

    Hey Cort,

    Required reading to accompany this article: XMRV the Virus
    Don't know how you keep up this prolific learning curve and writing pace! Just wanted to offer readers that your other article from today: XMRV the Virus http://www.forums.aboutmecfs.org/content.php?79-XMRV-the-Virus should be required reading as a companion to this article.

    Play to your strengths: Science, not Sensationalism!

    One of my biggest concerns about the XMRV replication attempts was that they made conclusions that were not at all in keeping with the science and their fragile methodology. Many readers have written how these leaps of logic diminish the credibility of these authors. With today's two articles, you do a great job of summing up and thoughtfully examining many of the findings to date. I have to say however that I am dismayed that you would join the chorus of premature and sensationalistic conclusions in this article, when your writing on the science (AKA XMRV the Virus) is so thoughtful and compelling.

    A cheap (but hopefully helpful) shot from the Peanut Gallery
    I guess my cheap shot from the peanut gallery is this: You do such a brilliant job usually of dispassionately summarizing and weighing the science. But I perceive a huge disconnect between some of your conclusions in this article, and the measured, professional, intelligent discussion of science that you typically provide (XMRV the Virus being a great example).

    A few examples of where sensationalism raises its unnecessary head:
    "The inability of anyone other than the WPI (and the NCI and Cleveland Clinic)
    to find XMRV
    is mysterious.


    it's alarming that no one has yet found even one
    CFS patient with an XMRV infection.

    The fact that zero of several 100 people with CFS
    have tested positive for the virus is alarming...


    Were at a real conundrum. "
    C'mon Cort... you don't have to join the fray of tabloid and unfounded conclusions on XMRV science ... you do such a fabulous job discussing the science... you don't need sensationalistic and inaccurate conclusions to draw readers to this site!

    We're not in any kind of conundrum with XMRV!
    There is no mystery. No cause for alarm.
    These are VERY early days!:Retro smile:


    Look at how long it took the Science team to do their fine work. As you said yourself,

    "Its worth noting as well that no study has come close to matching
    the comprehensiveness of the WPIs original study".


    So why the gratuitous, alarmist language? Look at how long in the pipeline the XMRV research papers were, that were presented @ the Conference on Retroviral Infections! These rush jobs on ME/CFS/XMRV, with profoundly flawed methodology (UK etc.), don't deserve the influence you're granting them. IF a rigorous, credible, replication study comes out that can't find XMRV in ME/CFS patients - THEN might be the time for sensational language! But your above statements are just not in keeping with the science.

    Bottom line, play to your strengths, because they are indeed GREAT! And leave the spurious and premature conclusions to the tabloids. It just diminishes the credibility of an otherwise OUTSTANDING site!:Retro smile:
  3. Cort

    Cort Phoenix Rising Founder

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    Tell me what you really think Parvo :). I am actually quite worried about XMRV. I'm wondering if culturing is going to do it....I really don't know. When Dr. Vernon went with the 'its the subset' argument after the last study - that got to me. The fact that she didn't go after the methodology worried me.

    Then again we hear of that April 'surprise' from the NCI. Honestly there are rumors flying both ways on this - X group IS finding it, X group is NOT finding it - no need to draw conclusions yet.
  4. parvofighter

    parvofighter Senior Member

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    What u said!

    Hi Cort,

    I know, I know, I do tend to shoot from the hip! :Retro smile: You pretty much captured in 5 words, the essence of what I was trying to say in my long-winded post:
    I really think it's premature at this point... but do love your articles... Keep eating your Wheaties!

    Cheers, Parvo
  5. hvs

    hvs Senior Member

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    I don't care whether xmrv is the master key or not, but remember the Dr. Bell predicted a few failed "replication" studies right off the bat.
  6. Marco

    Marco Old blackguard

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    Excellent blog Cort. I find your style genuinely inquisitive, balanced and level headed. As regards the science I think we're all agreed that its too early to draw conclusions.

    One thing however that has been bugging me with WPI (the only thing to date - I'm not anti them or unduly sceptical of their methods) is the matter of the private XMRV testing offered by them. I know there was a not particularly illuminating debate on the WPI ethics thread in which their financial motives were questioned. Personally I don't see an issue given the Whitmores' financial background and the fact that even at $600 a pop they would need to do a lot of testing to cover their costs. Perhaps, Mr Whitmore, as a hard headed businessman, just expects WPI to at least cover a little of the operating costs?

    However, If not for directly financial reasons then why? Taken at face value, from what has been stated publicly, they are offering a test to a particularly vulnerable group of people, to determine if they test positive for a virus which has been associated with ME/CFS, only to date by them, and to date not shown to have any causal link with the illness.

    This strikes me as insensitive or at worst unethical for no other reason than it raises hopes at much too early a stage. To date we have the confusion of those testing negative on a test which has now been discontinued as not sufficiently robust. As for those who have tested positive, what exactly did WPI think they were going to do with this information as we're still a long way from proving any causal link not to mention offering therapies?

    Did WPI anticipate negative studies outside their control and hoped to head them off with this additonal data? Do they know more about XMRV's pathology that they haven't as yet published. If they do, and its bad news, was it really responsible to have people running around with an XMRV positive result? The linkages with cancer and speculation over transmission is bad enough. Were they hoping to bank the samples for further studies? If so, I doubt they can infer much about a cohort which must have been diagnosed via various criteria or self diagnosed. Are they working on a patentable diagnostic test?

    Perhaps they were so convinced of the XMRV/MECFS association that they felt they were doing us all a favour and just exercised poor judgement? Certainly WPI aren't the first lab to offer private testing, but other tests are usually offered where a therapy (regardless of how dubious) is also available. I'm genuinely baffled as to why they felt the need to do this when they must have anticipated that their findings would be 'controversial'.

    I'm sorry if these are unpopular questions to ask and if anyone wants this post deleted - just go ahead - you have my permission.
  7. Adam

    Adam *****

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    I think this has already been covered in at least one thread. As I recall (correct me if I am wrong) WPI only offered a test after Cooperative Diagnostics? started offering their test (PCR only?) which only found negatives. I don't see how the WPI can be blamed for offering a more valid test in the face of blatant commercial interests by another Lab.

    WPI (Judy Mikovits presentation) publicly stated that they anticipated negative studies. I don't see how this correlates to them feeling a need to gather 'additional data'?

    The WPI may not have told us everything they know about XMRV's pathology simply because this is ongoing research which they would be criticised for feeding piecemeal to the media (it does seem on this count they cannot win).

    I have no sense whatsoever that there is 'bad news' thay are keeping from us, on the contrary. Judy M's recent email response to an enquiry (which she said could be quoted publicly) clearly stated that there position has not changed re there original paper. She also stated (yet again!) that other studies have not found XMRV because they have not used WPI's methods, whereas NCI and NIH? WPI's collaboartors did.

    Why should there be a problem with you asking unpopular questions? Your exact points have been asked by many others. No need to delete any post other than an offensive one. I'm just not sure what more there is to add? Haven't we picked this to pieces put it back together picked it to pieces over and over and again?

    IMHO your arguments don't hold up. But others might think differently. We agree to disagree...and move on.

    Is there anything more to add? Or can we move on?
  8. Marco

    Marco Old blackguard

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    Hi Adam

    You seem to think I'm putting forward some sort of argument or criticising WPI. Far from it. I'm expressing genuine puzzlement and just trying to work it out for myself.

    I admit that I'd been ingnorant of or forgotten about Cooperative Diagnostics offering a test before WPI and maybe this is the answer. Still a weak argument In my view to offer people the opportunity to test XMRV positive or negative without fully understanding what that implies.

    You say this has all been discussed ad nauseum. I haven't seen that discussion, just the thread I mentioned discussing possible financial motives.

    I'm still puzzled as to their motivations, not because I suspect anything to be particularly concerned about, but because it strikes me as odd. If no-one else thinks its odd and it has already been discussed to death then I'm happy to move on.
  9. Adam

    Adam *****

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    Hi Marco

    I am sorry if I mistook your tone. Certain language/phraseology tends to illicit a defensive response in me. For instance - bugging me - poor judgement - hard headed businessman. Maybe I am too sensitive and read too much into this?

    Similarly, when you said - Taken at face value, from what has been stated publicly...my radar goes off. I think; this infers a hidden agenda. I guess there is a paradox here. I am a very trusting person. I see no hidden agenda. I believe in the good motives of WPI and the Whittemore family, so when I smell a whiff of, what I believe to be undue crticism I immediately go on the defensive.

    Logically I cannot percieve anything but genuine people here, doing a genuinely good thing. On the other side of the coin we have ingenous types (psychosomatic lobby/insurance industry/govt. health departments) with a clear agenda: derail the locomotive before it gets up a head of steam.

    Until I got ill (1996) I was a loyal supporter of my local football team; Sheffield United FC. For the vast majority of true supporters (those that went every week, both home and away) there was an unwritten rule - never boo the team whilst the game was in progress, or even at the final whistle! Slag them off all you like amongst yourselves in the pub after the game and come back the following Saturday ready to cheer them on again, even if the performance was poor, the tactics all wrong etc. etc. I guess by now Marco you see where I am coming from? I'm team WPI through and through. I believe in them. If it turns out I was wrong, so be it. But I am not prepared to barrack them whilst the game is still in progress.

    BTW I don't think we've even reached half-time yet?

    If you are puzzled by the WPI's motives, it might be best to at least air what you think they might be. That would help any further misunderstanding.

    all the best Marco

    Adam
  10. Cort

    Cort Phoenix Rising Founder

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    I think its just a difficult situation. To some extent I think everybody's right. Dr. Mikovits said that the Cooperative Diagnostics test did spur them to move more quickly than they had anticipated. I think they were also very high on their test, very confident about the results and Dr. Mikovits is still very confident. The testing must also bring in much needed money for research.

    On the other hand XMRV is not validated yet and its not clear how much of a factor it is. I imagine some ethicists would be up in arms but this is not a black and white decision for me; whether XMRV works or not I imagine a lot of people would be happy to contribute to the WPI's understanding of this virus and the role it plays in CFS. (I'm sure some wouldn't as well).

    I don't think they have bad news they're not telling us. If XMRV doesn't work out I think its clear that they'l have demonstrated too much confidence early on - which would simply be an error in judgment. The seemingly coordinated media campaign was an example, I think, of how confident they were. Given all they did in the Science paper they certainly had reason for confidence.

    They seem to be doing the honorable thing retesting people for free - good for them.

    Its a judgement call for sure. Its gives them valuable funds - good. Perhaps provided information that is not important in the long run - not good. Some XMRV wins would make this question mostly moot to most people.
  11. Marco

    Marco Old blackguard

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    bugging me - poor judgement - hard headed businessman.

    Figure of speech and the truth. It has been bugging me and that's why I raised the issue. Poor judgement if probably what I'm alleging if anything. Hard headed businessman is not a perjorative term in my book. I'm all for fairer distribution of wealth but someone has to create the wealth in the first place. Those who have been successful in business think in terms of the sustainabilty of a project and having an income stream is a factor in sustainability. We do want WPI to continue don't we? In any case I discounted this as a likely motive for offering the tests.

    Taken at face value, from what has been stated publicly

    Simply, that from what we know, XMRV's role as even a contributory factor has not been proven beyond doubt. What I was suggesting, that might not have been revealed to us to date, was that WPI might have more proof on causality. If this was the case it might go some way to explaining why they offered the test to individuals although it's still a weak reason.

    On the other side of the coin we have ingenous types (psychosomatic lobby/insurance industry/govt. health departments) with a clear agenda: derail the locomotive before it gets up a head of steam.

    Which is why I had doubts about even raising this issue and offered anyone the opportunity to delete my posts.


    If you are puzzled by the WPI's motives, it might be best to at least air what you think they might be. That would help any further misunderstanding.

    Poor judgment is the only thing that occurs to me, at the moment, given what we know. Cooperative Diagnostics? were, in my view, wrong to offer a test at this stage, and WPI were equally wrong to do the same. Just because someone does something stupid, you don't have to follow, especially if you are a well repected research facility, so that argument isn't convincing.

    Perhaps I'm wrong but surely the proper order of things would be to establish the association of XMRV with ME/CFS; then establish causality. Then there might be some value in offering the test but preferably hold back until therapies had been devised.

    Guess I'll have to stay puzzled.
  12. Koan

    Koan Be the change.

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    To impugn the motives, even obliquely, of the Whitemores, who have funded this undertaking themselves, or of Dr. Peterson, who has given his career to solving this illness for us, is beyond my comprehension.
  13. Kati

    Kati Patient in training

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    WPI is my team too!!!

    Offering testing to the public came out of many many requests from the patients that wanted to know, regardless of the price. We are a desperate bunch, that want to know. Our UK family can't stand being under constant darkness from Wessley. Most of us don't have appropriate health care and want to prove to our doctors that it's not in our heads. WPI graciously responded to that, the same way Dr Judy answers e-mails from the patients.

    Being in the Olympic city and country host, I cheered for all that won medals or showed up at the start. But medallists, especially gold from Canada got the most cheer and roar. In fact, the streets of Vancouver, the stadiums, the free event venues were wild with red and white and fuzzy red mitains crazy Canuck cheering for their team. Never seen before. Heck Toronto closed Younge street after the men's hockey gold medal.

    WPI is my Canadian Hockey team. My hero. i will be forever grateful.

    They are confident, with reasons.
  14. Marco

    Marco Old blackguard

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    I think you'll find I wasn't impugning anyone's motives, even obliquely. Just questioning the issue of judgement and wondering if there were other factors at work we weren't aware of.

    Please bear in mind the potential motivations I mentioned. Financial reasons, I don't have a problem with per se. I don't expect anyone to do this work pro bono. To head off any negative studies - I don't have a problem with, if the tactic was effective. Even building up a bank of samples, if intended, doesn't cause me a problem, even if doing it this way was methodologicaly unsound.

    The judgement revolved around raising the hopes of sufferers prematurely. Even though they didn't claim a causal link they must have been aware that this is exactly what sufferers were thinking and hence the demand for the tests. The WPI research gives me hope, in fact its the reason I took an interest again in ME research after decades of disappointments. However, as things stand, an XMR positive result wouldn't give me any more hope and I don't know how I'd feel if given a negative result - as a number on this forum have experienced. Nor do I know what practical value a positive result would have at this stage. Stacking the advantages of offering the test against the downsides would have convinced me not to do it - hence my general puzzlement and wondering if there were other reasons.

    As for not being on the team, I'm on team 'hoping for a cure after 25 years'. WPI are not the only game in town. In fact XMRV can't be the simple causal agent if 4% of the population are infected, so even proven involvement of XMRV and a positive test result doesn't explain everything fully.

    Believe me, I hope this is 'IT' and its not as if any perceived 'ethical lapse of judgement' compares to being accused of being sexually abused or being a malingerer. But, as has already been said, there's a lot more work to do before we start seeing the practical benefits flowing.

    As for convincing UK medics, the Department of Work and Pensions etc, you could wave your test results until blue in the face! Until any test or treatment is approved by NICE it has the same status as homeopathy - as from last week, ZERO.
  15. julius

    julius Watchoo lookin' at?

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    I understand your question Marco. I think it's fair and valid.

    When I read the original headlines in Oct., the very first thing I did was to start searching to see if tests were available. I'm sure I am not alone in that.

    Anybody in the health 'business' would know this. And WPI was aware of the sharks who would start a feeding frenzy.

    As far as I know, by offering the test for $600, they are barely making a profit. So by having their test on the market so cheaply, they discourage the sharks from getting involved. Sharks wont even bother if they can't charge more than $600, and nobody is going to buy their test for $800+ when they can get the cheaper one. Dr. MIkovits stated publicly that was the main reason they got involved (in other words of course).

    Another point too, that I've never seen come up is the delay in offering the test by WPI. Originally they were saying they were in negotiations and the test would be available within a couple weeks. Then time just went on, and I think it was more than a month before it was available. I suspect there was some other thing going on in the background that we will never know.
  16. Snow Leopard

    Snow Leopard Senior Member

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    This comment is curious. This hypothesis is either wrong, or it highly suggests that XMRV is a result of vaccine contamination...
  17. Adam

    Adam *****

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    I have wondered on and off why Coffin said that. It does not tie in with outbreaks which date back to early thirties? So you could be right and he is thinking vaccines. As some have suggested on another thread, something we will most likely never know.
  18. Andrew

    Andrew Senior Member

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    Cort, thank you for another balanced report on the subject. And one that is so easy to read.

    There was, however, an alarm that sounded as I read. You said:
    Where did this come from? Because if the Science study was indeed a blinded study, then this method is impossible.
  19. citybug

    citybug Senior Member

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    I wish the commentators like Vernon wouldn't go to cohorts first for an explanation. From Cort's earlier reports on studies of XMRV and the methods used by WPI to amplify the virus it seems to me as more is published about the retrovirus, there is more reason to think it lurks in tissues or bone marrow and white blood cells could have resistance to the virus ( http://www.pnas.org/content/early/2010/02/24/0913650107.short?rss=1 ) . It wasn't been found earlier because it is hard to find with PCR and usual techniques for looking at viruses. Why give weight to the people who can't find it over those who have studied XMRV?

    From Cort's XMRV buzz page, Phoenix Rising
    Feb.20

    Dr. Goff reflected on how easy it is to grow XMRV in the right cell types - an important finding because that allows researchers to intimately study the virus. The fact that the virus is easy to grow in hormone sensitive cells is important because those are the types of cells that the virus will probably be found most readily in the body. (This apparently suggests that immune cells will not be the main reservoir; ie the main locus replication in the body, and it, of course, fits with the finding of the virus in prostate tissues).
    ...(Cleveland Clinic) They're looking at these monkeys very carefully - she just gave us a little glimpse of what they've found - but thus far XMRV is setting up camp in the lymphoid organs and the reproductive organs (prostate, testes, cervix, vagina)with of these animals. The lymphoid organs (spleen, thymus, bone marrow, etc.) create lymphocytes (among other things) - the white blood cells the WPI was studying.

    Groom Study Issues - We've been digging deeper into the Groom UK XMRV study on the Phoenix Rising forums with the assistance of members with technical expertise in this area. Questions regarding the necessity of culturing the cells start to increase viral expression - before the PCR is done - have come to the fore. My understanding is that there’s only one reason to culture cells and that’s to up the levels of a low level virus. The Science paper has three sections where they culture the cells; they obviously did that for a reason – yet the Groom group ignored it and simply used unstimulated cells.
  20. flybro

    flybro Senior Member

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    WOW Andrew I can't belive this hasn't been picked up on b4, I hope this was a comment about the initial effforts to find a virus and b4 the blinded studies.

    I cant imagine it wud relate to the Science study.

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