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letter Nijmegen to Whitemoore

Discussion in 'XMRV Research and Replication Studies' started by lansbergen, May 1, 2010.

  1. omerbasket

    omerbasket Senior Member

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    That thing might explain - even if everything that the dutch researchers says is correct - why they couldn't find XMRV in samples that were XMRV positive: They used PCR on a sample sent to them by Dr. Mikovits - a sample, that as I understand it (and correct me if I'm wrong), might still have replicating cells - and found XMRV (let's assume, although I'm really suspicious about these dutch researchers, as well as the british ones). Than, they took their own samples - old samples in which the cells were not replicating - and used, let's say, the same PCR test on them. They didn't find anything because the cells in these cases were not replicating, as oppose to the case with the WPI sample. On the other hand, WPI have tested the samples sent to them by the dutch with verious testing methods that does not require replicating cells, and found XMRV in some of the samples.

    Now, that being said, I don't think it could take anything away from the wise notes that were being raised here regarding what seems to be, at least, low quality of research in this dutch study.
  2. oerganix

    oerganix Senior Member

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  3. Katja

    Katja

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    A few days ago I read an article about how Frank van Kuppenveld, researcher in the Radboud hospital in Holland, interpreted the differences in studies: in the US they should have taken blood from a group of people which is not reprentif for the biggest part of cfs-ers, because in Nijmegen they didn't find the virus in de samples. After that they did new research in the US with the same bloodsamples from Nijmegen, and found again the XMRS- virus. Van Kuppenveld says that the bloodsamples from Nijmegen should be polluted in the US.
    http://www.mecvs.net/module-ME_CVS_docs-viewpub-tid-1-pid-539.html (fot the people who speak Dutch).

    I've laughed my ass off.
  4. parvofighter

    parvofighter Senior Member

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    BMJ Update

    Popping in for an update...

    Tina, you hit the nail on the head.
    FYI here's the section from the 29 page complaint that was sent to the BMJ and the UK Press Complaints Commission, about the van Kuppeveld et al decision not to include the WPI's positive findings. The UK Press Complaints Commission requires that specific areas of the Editor's Code of Practice be cited, hence the language used. The submission requested an indication of intent within 10 days, with redress within 30. Submission sent in on 24th April.
    Violation #1: Van Kuppeveld et als claim that they detected no XMRV in their patients or controls
    From van Kuppevelds Results: We detected no XMRV sequences in any of the patients or controls in either of the assays, in which relevant positive and negative isolation controls and polymerase chain reaction controls were included.

    a.This statement is inaccurate and misleading, (violating Code of Practice item # 1, i, if not also Public Interest item 1, I serious impropriety), as the authors knowingly neglected to mention that the Whittemore Peterson Institute (WPI) at the explicit request of van Kuppeveld tested seven samples sent to the WPI. Three of these samples were positive. Additionally, results were reported to van Kuppeveld prior to the publication of his BMJ article, with confirmatory emails cited.

    i.From the full letter documenting van Kuppevalds requests for the WPI at: http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf: Extract: We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerrs and Dr. van Kuppevelds cohorts prior to the completion of their own studies, as they requested.

    ii.From translation of the Ortho article on this topic at: http://www.facebook.com/notes/whitt...ortho-web-post-by-toine-de-graaf/382483903025 Frank Van Kuppeveld has sent us seven samples, Mikovits said. They were numbered 1 to 7. It was about cDNA, that he had made out of RNAWPI tested these seven samples with advanced PCR techniques in a closed system, so that contamination was impossible. Three samples appeared to be positive. After they reported the positive numbers to UMC St. Radboud, a message was returned, saying it concerned 2 patients and one control subject. For Mikovits, this result was expected. We never were informed how many control persons there were on those seven samples, but two positives in seven is approximately what I expected. I didnt count on a 100% score, especially not with PCR.

    An indication of how influential this omission of positive findings was and why this is in the Public Interest to correct it: One of many science blogs commented that even with cohort discrepancies, one might expect to find SOME positive XMRV samples in CFS patients. From ScienceBasedMedicine: (http://www.sciencebasedmedicine.org/?p=3932 )

    Even if you think that some of the UK subjects didnt qualify as having CFS, if even a few of them had CFS and the virus was really associated with it, the virus should have shown up in at least a few subjects.

    Well, the virus DID turn up in a few subjects. But van Kuppeveld et al withheld that pivotal information, allowing scientists around the world to conclude that something was rotten in the Science work not in Holland. (This violates Editors Code of Practice # 1, iii in that the BMJ did not clearly differentiate between comment, conjecture, and fact. The omission of a comment on the positive WPI findings allowed readers to conjecture incorrectly that the Science findings were flawed.) Additionally, van Kuppeveld in a subsequent interview claimed that the WPI results were inaccurate something that should have been transparently revealed, and explicitly addressed in the Discussion section.

    In other words, van Kuppevelds omission had a ripple effect in the scientific world that was not justified, based on the flaws in his teams science and the BMJs peer-review process. For this reason this necessarily invokes the Public Interest, specifically items #1, ii protecting public health and safety -; and #2 Preventing the public from being misled by an action or statement of an individual or organization.
    Gerwyn & Natasa too - thanks for your insights. :Retro smile: Omerbasket, what you said really jives.

    And the crux of this whole mess, Ladies and Gentlemen. THAT is why you have a DISCUSSION section in each and every scientific paper. So the authors can be transparent about, and give plausible explanations of discrepant results. It is the height of arrogance and hubris to deny readers the option to come to their own conclusions. Even worse, is when you're assuming you're smarter than many of the BMJ readers. After all, that's the whole idea of scientific papers: to report results - warts and all - and hope that the unvarnished facts will encourage others to research the reason for these discrepancies. It's the whole essence of the genuine pursuit of scientific knowledge. Of course if discrepant results are knowingly withheld....?!

    In other words, this issue was formally included in the complaint to the BMJ and UK Press Complaints Commission. Fingers crossed...
  5. shrewsbury

    shrewsbury member

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    Way to go parvo. I thank you from the bottom of my heart dealing with this in a way that the truth will have to out within the scientific community and public awareness.

    [​IMG]

    I am SOOOOO looking forward to the response. May 24th (or is it 23rd???) is going into my date book.
  6. V99

    V99 *****

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    Hopefully just in time for the London conference.

    Well done Parvo :victory:
  7. Dr. Yes

    Dr. Yes Shame on You

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    Yeah, but if they did otherwise they'd have to let the world know that at least one WPI positive sample had tested positive by a different methodology - a bit of validation for the WPI study, and a potential invalidation of Drs. van der Meer and Bleijenburg's reputations in ME research.

    Not saying that's what they did, but any good detective considers possible motives given the facts in a case...

    bogart..jpg
  8. fred

    fred The game is afoot

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    Maltesefalcongate.
  9. V99

    V99 *****

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    I do like that, lets use it more often.
  10. JillBohr

    JillBohr Senior Member

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    Oh Fred! You Nailed It! This is the personality of a typical academic which does scare me since my children's health and future are depending on them. They do have such large egos yet they are so insecure. It is mind boggling and too scary for me to even think about.
  11. PoetInSF

    PoetInSF Senior Member

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    I'm surprised that they dignified the WPI letter with a response. It was not only factually incorrect, it was a blatant act of politics. There is no room for such antics in science, and a response only brings more publicity to WPI which is probably what WPI wants.

    Since XMRV-CFS politics does not pose any danger to the public health in general, unlike vaccine-autism politics does, there is no compelling reason for scientists or public officials to engage. They can and should just let the scientific process unwind to its natural conclusion without fussing. The politics is aimed at rallying the base anyway, and it is already working well without their help.

    My suggestion to WPI would be to stop the politics and put their patients on AZT trial instead. Nevada folks are already trying all kinds of antivirals on their patients, one more antiviral won't make much difference. They shouldn't have any difficulty recruiting the subjects either if this forum is any indication. If the trial works, then the debate will be over, period. They won't have to fight evil people like McClure or Kuppeveld who are out to smear WPI and CFS patients.

    BTW, Lancet was the one that published and then retracted vaccine-autism paper that started the whole tempest. To think that a paper that was rejected even by Lancet would dare to challenge WPI...
  12. Esther12

    Esther12 Senior Member

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    So they're saying the were in contact with the WPI, asking for more samples to be exchanged, with the WPI not getting back to them, while the WPI is claiming they wanted to swop more samples but were not replied to. Don't trust the postal service - use e-mail people!!

    From my reading of this, the WPI are not gaining many allies at the moment. If XMRV and CFS doesn't work out, they're going to look like nutters. If it does, they'll still be heroes, but I'd have prefered a more cautious approach at this point. If XMRV and CFS is going to hold up, it looks like it's going to take a while to really prove this to everyone, and it would be nice to have researchers on your side in the mean-time.
  13. JillBohr

    JillBohr Senior Member

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    If this were the Daily Kos, I would have my troll button on the ready. Are you really a poet? Are you really in San Francisco? Judging by your past comments, I would not be surprised if you were van Kuppeveld. Spreek je Nederlands?
  14. parvofighter

    parvofighter Senior Member

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    Thank you

    Thanks for my laugh of the day. It's a good thing those Canadian, Aussies and Kiwi public officials are so out to lunch. Preposterous that they would be concerned about an infectious retrovirus. Of course they agree resoundingly that neither XMRV-CFS nor its politics pose any danger to the public health.

    Perhaps a National Library Medicine keyword search of viral myocarditis, cytokine abnormalities, mantle cell lymphoma is in order.

    Hahahahahaha! :D You made my day.
  15. rebecca1995

    rebecca1995 Apple, anyone?

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    Poet, what was factually incorrect about the WPI's letter?

    p.s. Jill: I love dKos! :D
  16. Cort

    Cort Phoenix Rising Founder

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    Obviously what we need are

    multiple groups sharing large numbers of patients using agreed upon techniques

    -no more questions about culturing vs non culturing
    -no more questions about not going the whole hog
    -no more questions about cloned samples vs real samples
    -or good cohorts vs weird cohorts
    -or good researchers vs bad researchers

    Thankfully Dr. Mikovits has agreed to participate in those studies; in the end we'll (hopefully) have an answer that everyone can agree on. I hope they live up to our expectations.

    I would note that neither of these groups - the WPI or the Kuppeveld group - are going to decide the fate of XMRV. Their argument, with regard to that, is almost beside the point. If what we've been told is true about the DHHS study and the CDC study, and if as many groups are studying this as we believe, the work that is being done right now will decide this issue long before they conclude their argument.

    Can't wait for those studies (although I will surely peak at them through closed hands at first).
  17. Martlet

    Martlet Senior Member

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    Moderator note: Questioning a member's motive for posting is against the forum rules. Please drop the personal remarks and keep to the point in hand.
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Cort, agreed. Mikovits had list of about 8 that were doing studies. Plus, we have the Glaxo Smith Kline study working now. So answers will be coming.

    Poet, I disagree with you in one point. And I have actually posted this on the WPI Facebook page. Any incorrect information put out about the October 2009 Science Journal published study must be corrected publicly immediately. Now, disputes about what it means, conclusions should be handled in standard medical journals. But false information is damaging if allowed to flourish and take route. It can dash hopes of those that are hanging on by a thread. This can actually be a life or death matter since suicide is common in CFS patients. Also, false information about XMRV can prevent government funding into studies. False information about XMRV or WPI studies may hinder future publication of new studies from WPI.

    So, actually, I think Anne's letter should have come out much earlier. It would have cleared up a lot of things instead of allowing the problem to fester.

    But disagreements about what the science means should not be in battles in letters. Other studies will solve those issues.

    Tina
  19. Gerwyn

    Gerwyn Guest

    your factually inaccurate and bizzaren post is not worthiy of any kind of detailed reply.The WPI post was factually correct if you cant understand the science perhaps it would be better that you did not comment onit
  20. JillBohr

    JillBohr Senior Member

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    Your right Martlet, I will keep to the point at hand. I will donate money to WPI everytime Poet makes a rude comment against WPI.

    p.s. Hey Rebecca, it is great to have a fellow Kossack on board here. Wooohooo!

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