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Gearing Up for the Big Search for XMRV - WSJ Article

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by JohnnyD, Nov 17, 2010.

  1. JohnnyD

    JohnnyD Senior Member

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    http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

     
  2. Stone

    Stone Senior Member

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    What can I say? Doesn't it seem that a year after the Science paper came out that we should be farther along than this? Is it just me? *heavy sigh*

    I try to stay positive and look at what we have now more than what we still DON'T HAVE but come on already!

    Will somebody please get me back on the positive track? Remind me why this is acceptable after this much time again?
     
  3. Cort

    Cort Phoenix Rising Founder

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    I agree! This is the result of the NIAID stepping in almost 11 months into the process. They just sat back - finally, perhaps as a result of the Alter paper they decided they had to move forward in a major way. I'll bet Collins told them to get on it.

    So yes, waaaaaaay tooooooo sloooooowwwwwwww. The good news, though, is that they are really serious now - Lipkin is one of the best in the business - so, unlike DeFreitas of 20 years ago - they will get to the bottom of it. So commitment at the early stages - unnacceptable.....commitment now - impressive :)

    In the meantime wait for the Singh study - that will really tell us something and it will be out before Lipkin even starts collecting his samples I'll bet.
     
  4. Recovery Soon

    Recovery Soon Senior Member

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    OK, everyone. Let's lay odds. I'm looking for the more scientific minded (of which I am not) to weigh in on whether you believe XMRV is the cause of our illness, presently called CFS, or ME/CFS.

    I say 60 NO- 40 YES.

    (Please estimate with your head- not your heart).
     
  5. xrayspex

    xrayspex Senior Member

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    I AM VERY DISTURBED THAT HE SAYS HIS THING SETTLEs IT "ONCE AND FOR ALL" WHY IS HE KING OF ONCE AND FOR ALL AND NOT LOMBARDI?
    troubling, unscientific, hope its not a setup
     
  6. Stone

    Stone Senior Member

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    This quote is a little disturbing: "But Lipkin tells the Health Blog that everything they are doing is designed to make it possible to finally end the debate over whether XMRV is associated with CFS."

    I thought we had left "associated with CFS" and were heading for "causes CFS". From what I've seen, every positive study demonstrates a much higher incidence of XMRV (or it's relatives) in people with our disease than healthy controls.

    The negative studies only prove that XMRV is hard to find (especially if you're trying not to actually find it), but at no point in time has the BIG question been, "Is XMRV assiciated with CFS?", has it?

    Hasn't the debate centered more around handling protocols, contamination and patient selection criteria? And then behind those issues stood the causation question it seems to me, not the association question.

    I thought association was pretty much a given and what remained to be understood (after they figure out how exactly to find the thing) was whether or not this bug is causative or just along for the ride.
     
  7. LJS

    LJS Insert Witty Comment Here

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    You can not prove association without replicating the results of the results of the Mikovits study, no one has done this. Lo/Alter found PLV's not XMRV so no, association still needs much more solid proof.

    Researchers have no reason to try and not find something, everyone wants to be the first one to replicate the results. The whole time the big questions has been "Is XMRV associated with CFS?", the way to prove that is to find XMRV in CFS patients which many have tried and failed.

    Again association is no where near proven, you can not debate association until the WPI Science study results are replicated and published, which they have not been yet.
     
  8. LJS

    LJS Insert Witty Comment Here

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    Science does move painfully slow sometimes and has moved far too slow for CFS. We all want it to go faster but I feel things are falling into place now and we should get solid answers on XMRV once the the Singh and Lipkin study are finished. If both studies come back positive you will see a huge boost in the amount of resorces and speed of development of XMRV and CFS research.
     
  9. xrayspex

    xrayspex Senior Member

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    LJS--I hope things fall into place too
    I just don't see why Lipkin says if he fails its case closed......? hopefully he didnt say that and Amy read more into his comments
     
  10. Sean

    Sean Senior Member

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    Agree with this. Things are moving into place. Don't know is XMRV is the cause of our problems, but do know it is the most likely candidate I have seen in my time being sick, by a long way. Since I saw the video of Singh's talk, and also learned that the Lipkin study will be using the Fukuda and Canadian definitions, I have become a lot more confident they will find something.

    I also know that while science (and certainly the politics surrounding it) can move painfully slowly, and that we have paid a terrible price for that, I still would much prefer they took a little longer and got the answer on XMRV right.

    Actually, I think things are moving at a reasonable pace, considering what is at stake. This issue goes way past ME/CFS patients, it is potentially one of the most serious disease factors in human history. For everybody's sake, including ours, we must allow the basic science of XMRV (et al) to be firmly established. We must be able to clearly define and detect the relevant organism(s), before we can do anything else, including serious clinical trials.

    XMRV was first identified in 2006. In late 2009, just over a year ago, the first paper associating XMRV with ME/CFS was published (Mikovits/Lombardi). We now have serious scientific attention and some the world's best virologists on the case. By the end of next year the XMRV situation should be pretty clear, one way or another, and if XMRV is 'it', then we will be into serious clinical trials. That is quite fast for dealing a serious medical scientific problem (XMRV). I got no complaints about the speed research is progressing on XMRV, especially relative to how fast it was progressing before XMRV came along.

    I am all for closely watching the scientific and political process, and letting it be clearly known that we are doing so, and will hold people accountable for their technical and ethical failures. But any further than that right now (re XMRV stuff) is premature.

    There are a lot of goodwill points for us to earn here if we play our cards in a relatively restrained manner, and give the scientific process on XMRV a chance.
     
  11. alex3619

    alex3619 Senior Member

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    Hi Recovery Soon, A few months ago I would have answered 90% yes, 10% no. Even then I was trying to decide what part cofactors had in it. Now I would say: 60% yes, 30% yes with necessary cofactors, 10% no. These percentages change regularly as my understanding changes, and one good study could push me to 99% either way - the science is critical here.

    Now if you are talking about triggers being necessary, and allowing that XMRV cannot be causal without say a viral or bacterial trigger, then my percentages would be:

    10% yes, 50% with trigger, 30% with trigger and cofactors (eg genetics) 10% no

    Bye
    Alex
     
  12. xrayspex

    xrayspex Senior Member

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    Sean, I agree, I think xmrv could revolutionalize medicine, our approach to understanding and treating health and illness......it seems much bigger than just CFS and prostate cancer, the implications are staggering......but that ties into my concerns about truth coming out sooner than later, we cannot underestimate the influence of pharma and insurance companies, just for example:
    * In 2004, in the National Cholesterol Education Program, eight of the nine members of the panel writing the recommendations had financial ties to the makers of cholesterol-lowering drugs.

    * Of the 170 contributors to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), 95 had financial ties to drug companies, including all of the contributors to the sections on mood disorders and schizophrenia.

    * Remember Vioxx? The New York Times revealed that of the FDA panel recommending Vioxx remain on the shelf, nearly one-third had financial conflicts of interest with Vioxx’s maker, Merck.


    And of course the history of h.pylori and discoverer Marshall is fascinating and concerning

    but perhaps the cat is too far out of the bag on this one......my fingers are crossed
     
  13. Marco

    Marco Old blackguard

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    I don't like it. "Settled once and for all" has a harsh sound of finality to it - like an iron gate being slammed closed.

    I wonder will it be "settled once and for all" if the association is positive or will we have another year of bickering?

    On the other hand maybe I'm being too pessimisitic and Lipkin is well aware that CDC have been dicking around all this years and the comment, if that's what he said, is really aimed at them? I also wonder exactly which parties are making patient selection such a difficult process to agree?

    I'm just glad that Ila Singh is beavering away in the background.
     
  14. Megan

    Megan Senior Member

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    I am glad to see the Lipkin quote above about including other viruses from the same family, presumably MLV's picked up by Lo/Alter. All along I have been concerned that the WPI test is picking up 'something' in us that is like XMRV but not quite the same.

    So long as the WPI can pick patients from among blinded controls then they have found something of significance even if its not exactly XMRV or even MLV. I hope they are giving the WPI a chance to do this. I'm concerned that there might be others than those picked up by Lo/Alter. What if the Lo Alter study never happenned, then they wouldn't even be considering anything outside XMRV.
     
  15. Angela Kennedy

    Angela Kennedy *****

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    Apart from the ridiculous statement about ending the debate about association with CFS or not, my other concern is about the two 'widely used' criteria. Fukuda and Reeves? Fukuda and Oxford? What about that pesky Canadian Guidelines? If THOSE are NOT used, then we've got trouble ahead.

    Science is not a rational self-correcting system. It's performed by scientists, who are as much social actors as anyone. Like the market, it cannot be left to its own devices without challenge. If scientists are shackled by 'bounded rationality' to the extent they're going to ignore the importance of the Canadian Guidelines for identifying the proper research cohort to replicate the WPI findings (it's too complicated for them?), but still think they can 'end the debate', then you all really are screwed.

    If that seems a little apocalyptic and hysterical, please bear in mind, all these scientific dudes who can't get their little heads around the use of Canadian Criteria, and therefore can't replicate the WPI study, because that's what been happening!
     
  16. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    I still think that if Lipkin et al doesn't pan out, we still have Singh.

    Lipkin et al are looking at the blood, Singh is now looking at tissue samples. If other researchers cannot find it in the blood (because its not primarily in the blood, except maybe in acute infection), it is still possible that they may find it in tissue samples, for which no protocols currently exist either.

    The only down side of this that I can see is that Singh deliberately injected the macaques under lab conditions, and the virus migrated to tissue. I suppose this could be considered to be a vaccination scenario. Do I remember correctly that it didn't seem if the macaques were actually feeling/looking ill after the injections? For eg. would the polio virus show up in the tissues of a human shortly after we are vaccinated with polio virus? Sure we would have polio virus in the body, but does it mean anything?

    And does showing antibodies to something actually mean you are suffering with it? Not necessarily. It just means your immune system has come into contact with it & addressed it.

    Also, showing infection when an animal has been deliberately injected with something is one matter, but would the infection actually occur if a macaque came into contact with XMRV in a real life scenario (via infected saliva, or sexual contact scenario)?

    And if its not endogenous, where is this mysterious reservoir in real life, ie which animals are walking around with it and which animals are harbouring it, but like mice are unaffected by it for eg. How do we know its not transmitted like cholera for eg? Or maybe its in the soil? It must have come from somewhere - mice is just the best guess we have for now. We don't actually know anything about it yet.

    I don't see how Lipkin can say that these studies will answer everything for once and for all. There are so many unanswered questions.
     
  17. Cloud

    Cloud Guest

    LJS: Thanks for the clarification on how certain terms can be defined differently in the scientific world. Because in my mind, 67-98% xmrv+ pwc's vs 6% healthy controls would have surely defined "association".
    I thought: validation = association (which is what Alter, Lo did)......and Replication = proof (yet to be done).

    Angela, I don't understand why they bicker so much about right lab procedures, contamination, handling procedures, etc.....and yet it seems much less a priority to reach agreement on cohort selection criteria.....which should be priority #1.
     
  18. Enid

    Enid Senior Member

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    But slowly and surely with all the serious science (Virologists etc.) we are on the way.
     
  19. Jemal

    Jemal Senior Member

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    We are getting a lot more attention than before, so I guess that's great.
     
  20. Angela Kennedy

    Angela Kennedy *****

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    I think that's a very optimistic belief at best. The 'serious science' can't even get its collective head around the cohort criteria. The only people making noise about that appear to be patients and other advocates. THAT'S odd in the least.

    Add to that noises about defining 'once and for all' and we've got some real odd 'science' going on.

    As Cloud says, selection criteria for replication should be the number 1 priority. I think the focus on contamination and lab procedures etc are either red herrings or, it is possible they just do not understand the complexities and flaws in the diagnoses of exclusion.

    Think about using AIDS patients for research, who don't exhibit cardinal symptoms/signs of AIDS! That's what the 'failure to replicate' Lombardi et al is analogous to.
     

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