Ian Lipkin on XMRV

XMRVLate last year virologist Ian Lipkin was asked by National Institute of Allergy and Infectious Diseases head Anthony Fauci to coordinate a multi-center study of CFS patients. Newly drawn blood samples from 100 CFS patients and 100 healthy controls from around the US will be blinded and sent to three groups – FDA, CDC and the Whittemore Peterson Institute – and assayed for the presence of XMRV. After the recent publication by Ila Singh on XMRV in CFS patients, Dr. Lipkin sent me the following note:

Dear Vince-

We have a plethora of explanations for how CFS/XMRV/MLV studies could go awry. However, we don’t have evidence that they have. Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion.

I remain agnostic. We won’t have answers until the end of 2011.

The NIH will post something on our study today.


240 thoughts on “Ian Lipkin on XMRV”

  1. Lipkin’s methodology for validation studies like these is as follows (according to Lipkin):

    “Establish concordance across laboratories for sensitivity and specificity using positive and negative controls. For PCR assays, we insert non-wild-type sequences into positive-control template constructs to differentiate bona fide versus control products.”

    Also, in principal everybody chooses his/her own methodology:

    “…it is best to employ assay formats proposed by all key investigators.”

    Another bad scientist?

  2. Nested PCR and qPCR is not Nested RT-PCR. That cannot be interpreted. It is a fact.

  3. I mean the regulators will surely not approve this Lipkin methodology you’ve dreamt about.

  4. No one with CFS will ever be able to read all these comments, 200 in this and 500 in the other.

    its all a blur.

  5. What does that post argue against my quote above?

    I corrected your “quote” (which wasn’t a real quote) with a proper, recent Coffin quote regarding replication and now you post a quote that has nothing to do with replication and that every anti-xmrv nut like myself supports fully. I must say the quote is somewhat out of context, as leaving out “any more” does really change the meaning of the quote. But thanks again for playing. : )And I am very glad that you don’t use this previous quote anymore:John Coffin asserts, “I think a causal role for HIV is not really on the table anymore in a serious way.”That was a real gem and showed you how silly Coff..I mean all the people that didn’t question that quote really are. 😉

  6. Nope. If that’s “the only way”, please give me an example of such science in action.

    Do perhaps the regulators not approve you posting an example?

  7. what in the world are you talking about Karen? Financial interest in what? I am clueless.

  8. What is puzzling is that Mikovits states she has a drawer full of research papers that no one will publish to refute the negative research papers. Best said on a patient who has ME/CFS in his blog

    Judy Mikovits Has A Drawer Full Of Papers

    ….”What is holding
    Judy Mikovits
    back from publishing? Apparently she has a drawer full of scientific publications, but,
    just like in the early days of HIV
    no one will publish them. Just like the authors of negative XMRV papers
    got accused that THEY did not want to find it, now she claims that THEY
    don’t want to publish her research. Who are THEY this time? Is it
    Science, a handful of prestigious journals, or dozens of scientific and
    medical journals? I am finding it hard to believe that all relevant
    journals like Science, PLoS, PubMed, Journal of Virology, Journal of
    the American Medical Association, British Medical Journal,
    Retrovirology, Journal of Chronic Fatigue Syndrome, … all refused. But
    even if this is the case. So what? Why not do it yourself?


    Dr. Judy Mikovits and Annette Whittemore from WPI, I challenge thee. I call your bluff. Cards on the table, please.


  9. Maybe people can’t see the forest through the trees or let’s not put all the eggs in one basket and keep an open mind here?

    Given all that, if you took a look at all the outbreaks throughout the history of this illness. Looking at the outbreaks prescribed to ME/CFS in 1934 at Los Angela Hospital, Iceland 1948-49, Royal Free Hospital 1955, Punta Gorda 1956, Copenhagen, 85 Lyndonville, 84-87Incline Village, Tahoe etc.. Most of these patients were not related so there was no genetic defect that compromised their immune symptoms. The outbreak was sudden, incubation4 -5 day and was transmittable quite rapidly.

    Given this knowledge, I know of no retrovirus that behaves in this fashion where it can be transmitted either aerosol or by non sexual contact over short periods of time. These hot spots do not indicate a retrovirus especially one has half baked and such a slow replicator as XMRV. Besides if XMRV is determined to be a contaminate created in the lab, then it would not apply to these past outbreaks.

    The question that I have is why are few fat earth people so adamant about a retrovirus that would have to behave very virulently over a short period of time and be transmitted in an unconventional way from the behavior of other retroviruses? I don’t see XMRV characteristics following that pattern. The etiology doesn’t fit a pathogenic model of a retrovirus. Is it me or why haven’t people picked up on this?

    Couldn’t it be multiple trigger viral or bacteria infection that could be causing the problem?

  10. By experiments that were performed much like the negative XMRV studies, except with HIV and HTLV they returned positive results.

    The idea that HIV and HTLV were confirmed by labs that did everything, from start to finish, exactly the same as the original investigators, or used your methodology of “confirmed positives” as a decisive way of determining what would constitute a positive result in their own experiments, has no basis in reality.

  11. You are being villified because they don’t like your “results”. I am sure I’ve read that before.

    And the similarity doesn’t stop there: in their vacuum that will not tolerate any critical thoughts regarding their assertions, your “guilt” has been established and it’s easy to catalyze these ideas.

    Even in a “good” post they will now see your “evil” intentions. Get used to it.

  12. However, you present no critical thoughts that move further than a belief. The evidence shows the virus is there and is associated with prostate cancer and ME/CFS.

  13. No one has attempted to replicate Lombardi et al, but Lo et al does support the findings.

    Your stance, without argument or without bothering to look at the data is to say it “has no basis in reality”. Try reading.

  14. I think Prof Lipkin is being somewhat optimistic. Fine if the study confirms Lombardi et al. But if Judy doesn’t get the “right” results with blinded samples you can bet the die hards will claim sabotage.

  15. SteveLikesCFSResearch

    As a complete non-scientist I don’t understand the approach of verifying the original results.

    I imagine it is really expensive to do a new study, get different results and then ask “why didn’t we find it”, then do another study, ask again “why didn’t we get the same results?” This won’t satisfy us non-scientists and ME sufferers at all.

    Wouldn’t it be much easier and cheaper to have a team of experts watch the WPI team doing their thing for a while and pointing out mistakes? This way there would be no room for speculation.

    This may sound really naive but sincerely, why isn’t it done this way?

    Oh and by the way, I had and have high hopes that xmrv was the explanation but I am absolutely willing to abandon this idea. I would never bash the Singh studies as I am very thankful for EVERY research that is being done in CFS.
    Even if it shatteres our hopes.

  16. Should be a laugh to see how Mikovits explains this one. I guess it’s not a “rep-lik-ay-shun” if the pcr tubes were a different colour or some other lame argument. Bye Judy, have fun with the retraction! You can probably test the burgers at McDonalds for XMRV while your retraining for your new career..

  17. When will scientists look in other bodily fluids and tissues of ME/CFS patients for XMRV and the polytropic MLVS found by Lo and Mikovits or other pathogens? We know the virus quickly leaves the blood from the macaques study and is altered by APOBEC. Lipkin has the technology to look in other fluids for pathogens, but not in tissue. Singh is an expert with tissue and is looking at random autopsies but not CFS patients. I agree non-scientists will not be satisfied since scientists (and funders) have not looked at any other part of the body, or applied all available technology.

  18. What is there to explain when the original findings or those of Lo et al have not been put to any test.

  19. @a76cf1733deb438a3e6b339a2f230d8a:disqus Of what results of Cort’s are you speaking? He has no results because he’s never done a study of which I am aware. Cort’s comments have been criticized on Phoenix Rising by me and others because they are illogical.

  20. I agree that these are, taken together, compelling arguments. I have seen all of these remarks made by others; except perhaps the 4-5 day latency period. This seems, in my lay opinion, to be a good point considering XMRV is a slow replicator.

    Obviously, if XMRV first came about in the 1990s, then it would not have caused the earlier outbreaks. People do realize this.

    I have been accused of being ‘crazy’ by LJ in a previous post, because she said I believe that XMRV has to be the cause. I do not think that and have NEVER said that anywhere. I have always said it could be the cause, but I think that it is more likely that one or more retroviruses, and/or cardioviruses or enteroviruses, most probably cause ME (this could be XMRV, one of the other HGRVs, the DeFreitas rv, or others known or unknown).

    Since she just made that up about me, it makes me wonder if she is just guessing that the majority of pwME don’t believe it’s XMRV, in ‘conspiracies’ etc. And if this supposed ‘silent majority’ doesn’t post on the forums or facebook or otherwise voice their comments, how does she know exactly what their opinions are??

  21. If you don’t think that there is, and has historically been, an extreme amount of malfeasance and nonfeasance regarding ME by the US and UK governments and selected European psychiatrists (call it a ‘conspiracy theory’ if you want), then you are not paying attention. This is basic.

  22. I *know* that Cort does not do studies. That is why I put “results” between quotation marks. Cort is a blogger/forum owner (or whatever); his posts are his ‘results’. 

    And his posts are (mostly) not illogical, but merely are viewed as being illogical by people that don’t like his ‘results’, because believing this will reduce a lot of cognitive dissonance caused by his pretty sensible assessment of the situation.

    Thus, it’s just like thinking the whole field of retrovirology (except of course the few research groups that report positive results) is doing “illogical” scientific experiments will reduce cognitive dissonance caused by the negative results of so many solid (for the most part) studies.

  23. “CFS Central: Did you test the new assays/methods used in the new study against any XMRV positive samples from your prostate-cancer study?
    Singh: Our prostate cancer study was entirely on prostate tissues. These were archived in tissue banks in a de-identified manner, so there was no way to go back to those patients and obtain blood samples.  So, we could not test some of the new tests we developed on our material from prostate cancer patients. 

    CFS Central:  (…)  It’s unclear to me why the new study didn’t culture XMRV from those two positives. 
    Singh:  Yes, we did.  And these grew just fine.  Apologies for not being clearer in the paper.  None of the patient samples tested positive, but the positive controls were always positive.” 

    “Singh contends that a virus similar to XMRV does infect humans, and her own work supports the prostate cancer connection.”

    The paper states only that a plasmid was used.

  24. Pingback: Journal of Virology Study on XMRV | Research1st

  25. Hear, hear!  LJ

    Well done for catching the first comment!

    I wholeheartedly endorse your comment.
    Thankfully, the ‘Liked’ button reveals where weight of reader-opinion lies (btw I agree with Jack’s reply to Flex, on the Liked-button issue that Flex raises further down this thread).

    It’s unfortunate that so many of the 233 comments (that
    was the count at the time I was reading) would be more appropriate
    on an in-house ME/CFS forum.  

    I suspect there are some interesting issues
    discussed within these comments, but 233 comments is way too many.  I simply don’t have the stamina to
    persevere wading through so much troll to find the gems.  It’s like e-littering.


    Re: the outbreaks of ME/CFS at various times, referred
    to by Guest (in reply to LJ).

    When I read this article at New Scientist I wondered
    whether a similar scenario could explain the self-contained nature of the
    various outbreaks of ME/CFS.


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  27. I have been accused of being ‘crazy’ by LJ in a previous post, because she said I believe that XMRV has to be the cause. I do not think that and have NEVER said that anywhere.

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