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Retrovirus Conference in Prague, April 29-May 4, 2010

Discussion in 'XMRV Research and Replication Studies' started by parvofighter, Mar 3, 2010.

  1. fred

    fred The game is afoot

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    They're connected with the Ortho magazine, apparently, and have taken up an interest in ME in "the right way, not the Wessely way", as a Dutch friend put it.
  2. bettine

    bettine

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    Utrecht (Netherlands)
    That's right, they are working very hard for us as patients at the moment. They are investigating and trying to find the truth and publish it. :cool:

    Perhaps Congressional should be just "congress"? I believe it was a Google translation and it translated Congres to Congressional.:innocent1:
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    ok, says "pay off" is coming. Does that mean some positive studies have been approved for publication. The part I want to know, positive studies, is vague in this.

    Tina
  4. Adam

    Adam *****

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    Sheffield UK
    Lee Van Cleef and John Van Wayne?
  5. VillageLife

    VillageLife Senior Member

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    United Kingdom
    this ones translated from the WPI facebook page....

    Positive ‘XMRV-study’ is only a matter of time

    Prague - May 3, 2010. Last October U.S. scientist presented a breakthrough around the research on chronic fatigue syndrome (CFS), which was published in Science. They found traces of the retrovirus XMRV in the blood of CFS patients. Thereafter, three groups of researchers, including one from Nijmegen, couldn’t confirm these findings. However, at the "Centennial Retrovirus Meeting" in Prague it became clear that the first positive 'replication study' seems only a matter of time.

    The June issue of the journal Ortho will focus on the multi-day conference in Prague, which ends today. Especially in the corridors this new retrovirus was the talk of the day. Insiders agree that the negative XMRV studies which have been published so far, were not exact replication studies. These groups used techniques that differed too much from those used by the U.S. researchers. This is also true for a yet unpublished German study, where XMRV wasn’t found in blood samples from CFS patients either.

    Recently the American scientist Dr. Judy Mikovits visited several European research groups to instruct them in the proper laboratory technique. It is now clear that these visits are starting to pay off. During the Prague Conference Mikovits explained once more in great detail the complex methodology of the Whittemore-Peterson Institute (WPI), the National Cancer Institute (NCI) and the Cleveland Clinic. This methodology of cultivating the virus is imperative because XMRV is only present in extremely low concentrations in the peripheral blood.

    Dr. Francis Ruscetti of the renowned NCI - a U.S. government agency – told Ortho that he hopes this controversy will be over in 2011. He is especially surprised about the fact that the investigators of the UMC St. Radboud concealed in their publication that the Americans found traces of XMRV in the same blood samples from the Dutch patients. "I do not know how they think they get away with this ethically," said Ruscetti. "I do not think this is good science." Ruscetti pointed out again that the WPI, the NCI and the Cleveland Clinic applied four procedures in their research. "In the negative studies only one procedure was applied." Ruscetti also ventilated his annoyance over what he calls the "whisper campaign" about contamination. According to the Nijmegen researchers, the Americans contaminated or polluted the Dutch blood samples.

    Among others Ruscetti is supported by Prof. Dr. John Coffin, who is linked both to the NCI and Tufts University in Boston. He is considered one of the most prominent retrovirologists in the world. "People have raised the issue of contamination," said Coffin. "But nothing is known about this. There is not a single shred of evidence to support these rumours. Much of the research is done at the NCI, in the laboratory of Francis and Sandra Ruscetti. They have a long experience with these viruses and are very cautious."

    Coffin emphasized once again that doing a replication study implies that it is performed in exactly the same way. "In none of the negative studies that have been published so far, the virus was grown," said Coffin. 'Only in the Science study this has been done, and that is a very strong point. "
    Researchers from Nijmegen were not present at this leading conference
  6. dmarie4301

    dmarie4301 Guest

    Press Release from Prague Conference---Good news!

    Has anyone posted this yet? Just came through Facebook via WPI. Sorry if it already got posted.


    Whittemore Peterson Institute: Press Release from Prague ConferenceWhittemore Peterson Institute's Notes.
    Press Release from Prague ConferenceShare.. Today at 4:25pm
    From: Michael Koolhaus on Co-Cure

    This press release was issued today 2010/3/05 in The Netherlands.
    url: http://www.voedingenpsyche.nl/nieuwsitem.php?item=86
    Here is an English translation.



    Positive XMRV-study is only a matter of time

    Prague - May 3, 2010. Last October U.S. scientist presented a breakthrough around the research on chronic fatigue syndrome (CFS), which was published in Science. They found traces of the retrovirus XMRV in the blood of CFS patients. Thereafter, three groups of researchers, including one from Nijmegen, couldnt confirm these findings. However, at the "Centennial Retrovirus Meeting" in Prague it became clear that the first positive 'replication study' seems only a matter of time.

    The June issue of the journal Ortho will focus on the multi-day conference in Prague, which ends today. Especially in the corridors this new retrovirus was the talk of the day. Insiders agree that the negative XMRV studies which have been published so far, were not exact replication studies. These groups used techniques that differed too much from those used by the U.S. researchers. This is also true for a yet unpublished German study, where XMRV wasnt found in blood samples from CFS patients either.

    Recently the American scientist Dr. Judy Mikovits visited several European research groups to instruct them in the proper laboratory technique. It is now clear that these visits are starting to pay off. During the Prague Conference Mikovits explained once more in great detail the complex methodology of the Whittemore-Peterson Institute (WPI), the National Cancer Institute (NCI) and the Cleveland Clinic. This methodology of cultivating the virus is imperative because XMRV is only present in extremely low concentrations in the peripheral blood.

    Dr. Francis Ruscetti of the renowned NCI - a U.S. government agency told Ortho that he hopes this controversy will be over in 2011. He is especially surprised about the fact that the investigators of the UMC St. Radboud concealed in their publication that the Americans found traces of XMRV in the same blood samples from the Dutch patients. "I do not know how they think they get away with this ethically," said Ruscetti. "I do not think this is good science." Ruscetti pointed out again that the WPI, the NCI and the Cleveland Clinic applied four procedures in their research. "In the negative studies only one procedure was applied." Ruscetti also ventilated his annoyance over what he calls the "whisper campaign" about contamination. According to the Nijmegen researchers, the Americans contaminated or polluted the Dutch blood samples.

    Among others Ruscetti is supported by Prof. Dr. John Coffin, who is linked both to the NCI and Tufts University in Boston. He is considered one of the most prominent retrovirologists in the world. "People have raised the issue of contamination," said Coffin. "But nothing is known about this. There is not a single shred of evidence to support these rumours. Much of the research is done at the NCI, in the laboratory of Francis and Sandra Ruscetti. They have a long experience with these viruses and are very cautious."

    Coffin emphasized once again that doing a replication study implies that it is performed in exactly the same way. "In none of the negative studies that have been published so far, the virus was grown," said Coffin. 'Only in the Science study this has been done, and that is a very strong point. "
    Researchers from Nijmegen were not present at this leading conference.

    :victory:
  7. Orla

    Orla Senior Member

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    Coffin and Ruscetti blast contamination rumours

    This was originally posted here http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1005a&L=co-cure&T=0&F=&S=&P=1724.


    This press release was issued today 2010/3/05 in The Netherlands.

    url: http://www.voedingenpsyche.nl/nieuwsitem.php?item=86

    Here is an English translation

    Positive ‘XMRV-study’ is only a matter of time

    Prague - May 3, 2010. Last October U.S. scientist presented a breakthrough
    around the research on chronic fatigue syndrome (CFS), which was published
    in Science. They found traces of the retrovirus XMRV in the blood of CFS
    patients. Thereafter, three groups of researchers, including one from
    Nijmegen, couldn’t confirm these findings. However, at the "Centennial
    Retrovirus Meeting" in Prague it became clear that the first positive
    'replication study' seems only a matter of time.

    The June issue of the journal Ortho will focus on the multi-day conference
    in Prague, which ends today. Especially in the corridors this new retrovirus
    was the talk of the day. Insiders agree that the negative XMRV studies which
    have been published so far, were not exact replication studies. These groups
    used techniques that differed too much from those used by the U.S.
    researchers. This is also true for a yet unpublished German study, where
    XMRV wasn’t found in blood samples from CFS patients either.

    Recently the American scientist Dr. Judy Mikovits visited several European
    research groups to instruct them in the proper laboratory technique. It is
    now clear that these visits are starting to pay off. During the Prague
    Conference Mikovits explained once more in great detail the complex
    methodology of the Whittemore-Peterson Institute (WPI), the National Cancer
    Institute (NCI) and the Cleveland Clinic. This methodology of cultivating
    the virus is imperative because XMRV is only present in extremely low
    concentrations in the peripheral blood.

    Dr. Francis Ruscetti of the renowned NCI - a U.S. government agency – told
    Ortho that he hopes this controversy will be over in 2011. He is especially
    surprised about the fact that the investigators of the UMC St. Radboud
    concealed in their publication that the Americans found traces of XMRV in
    the same blood samples from the Dutch patients. "I do not know how they
    think they get away with this ethically," said Ruscetti. "I do not think
    this is good science." Ruscetti pointed out again that the WPI, the NCI and
    the Cleveland Clinic applied four procedures in their research. "In the
    negative studies only one procedure was applied." Ruscetti also ventilated
    his annoyance over what he calls the "whisper campaign" about contamination.
    According to the Nijmegen researchers, the Americans contaminated or
    polluted the Dutch blood samples.

    Among others Ruscetti is supported by Prof. Dr. John Coffin, who is linked
    both to the NCI and Tufts University in Boston. He is considered one of the
    most prominent retrovirologists in the world. "People have raised the issue
    of contamination," said Coffin. "But nothing is known about this. There is
    not a single shred of evidence to support these rumours. Much of the
    research is done at the NCI, in the laboratory of Francis and Sandra
    Ruscetti. They have a long experience with these viruses and are very
    cautious."

    Coffin emphasized once again that doing a replication study implies that it
    is performed in exactly the same way. "In none of the negative studies that
    have been published so far, the virus was grown," said Coffin. 'Only in the
    Science study this has been done, and that is a very strong point. "
    Researchers from Nijmegen were not present at this leading conference.

    Patients, professionals and the media may read the latest news on ME / CFS,
    XMRV (and blood transfusion) on www.voedingenpsyche.nl. This is the website
    of the Congress Food & Psyche, which will be devoted entirely to ME / CFS
    this year.
  8. Orla

    Orla Senior Member

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    oops, looks like we both posted it at he same time. Maybe the mods can merge? (or just get rid of mine)

    Orla
  9. Andrew

    Andrew Senior Member

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    Los Angeles, USA
    It's so nice to see an article that stands up for us. I sometimes feel like the whole world is against us.
  10. Navid

    Navid Senior Member

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    Sounds like good news...ruscetti and coffin defending the work and calling dutch researchers unethical!!!!! wowza.
  11. leaves

    leaves Senior Member

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    Yay!! I neeeeded this :) thanks.
  12. knackers323

    knackers323 Senior Member

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    this isnt bad news but when are we to expect some definative news one way or the other? I thought we were ment to hear something a week or so back? but that has been and gone. for them to say it is only a matter of time is fine if your whole life doesnt depend on getting an answer. ive been waiting to live since I was 17 and am now nearly 31. time is something I just dont have to waste
  13. John Leslie

    John Leslie

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    I am XMRV positive (WPI results) and have followed this debate since the publication of the Science study. Thank you for your posts. My family asks why no one wants to do a replication study.... I tell them it would take a full year to do what Drs. Mikovits and Ruscetti did, and there aren't two Annette Whittemores.
  14. shrewsbury

    shrewsbury member

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    welcome to the forum John Leslie

    love your positive (no pun intended) attitude. Our science people say that things are moving forward quickly on the xmrv fromt - but it feels slow to me. I imagine more so to you.

    look forward to seeing you around.
  15. Knackered

    Knackered Guest

    Certain peoples career and reputation depend on there not being a biological cause, this could be part of the reason.
  16. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    Absolutely...and as delighted as I am to see XMRV being taken seriously in the retrovirology field - unless something is done to remove the Weasals and take away their powers to influence actual policy then there could be ten thousand XMRV positive people with M.E in the UK and it wouldn't make a squat of difference. The BMJ need to backtrack and actually support the pathogenisis (is that a word!) of M.E and stop publishing the Psych's articles.

    I am taking the test in the summer, I missed the UK trials but my doctors have refused me painkillers let alone believing that I might have a tumour which was idenfitied overseas. I had to get on a plane and see a doctor to get basic tests done - I might or might not have a tumour which is not the issue of this thread but Wessely's policies influence not just the NICE Guidelines but the general treatment of M.E sufferers over basic medical needs external from the actual diagnosis of M.E and it dangerous, unethical and wrong.

    If it weren't for the WPI then there would be no hope in fighting this but things are moving behind the scenes, Professor Hooper hinted last week in a phone call that the Psychs and their legal teams are rallying around. Perhaps they are scared of the next WPI move?
  17. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    I think we'll know sooner than later. The good studies apparently take time. Its unfortunate that the quick and dirty studies have had such an impact...but in the not too distant future, hopefully, this little interlude between the original study and validation of it will be quickly forgotten. If XMRV turns out - and these researchers very clearly expect that it will - its hard to imagine that things won't change big time in disease. XMRV will be, as has been said so often, a game changer - like a comet streaking across the sky - something as dramatic as that happens to few diseases. Well worth the wait.

    What a great boost for the WPI and XMRV. A very strong endorsement from these two influential researchers. They obviously felt that this was going off the rails a bit and they had to say something. You can feel their frustration. I imagine that venturing into the world of CFS and research has been an eye-opener for both of them. I'll be if you could get them to sit down and talk off the record you'd get an earful! Dr. Mikovits obviously feels the same way .
  18. Mithriel

    Mithriel Senior Member

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    Scotland
    There might be some hope Uno.

    The research being done on XMRV for prostrate cancer will be there for us.

    If they develop an antibody test for prostrate cancer then we can get it as well. If we have to organise it outwith the NHS someone will take our money :Retro smile:

    Then we will be in a better position to fight for treatment.

    I hope it will not come to that though. When things start to move, they will move quickly.

    Mithriel
  19. awol

    awol *****

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    Hello all,

    New to this forum and following the XMRV story closely. I am not severely disabled, do not have significant pain, and was gradual onset...so still waiting to see how much this applies to me. But I think the theory makes sense, so fingers crossed that this controversy gets sorted out quickly.

    I live in Switzerland where it is impossible to get a real diagnosis (note the absence of Swiss on the CFS google map) and where there is no insurance for ill defined diseases, so let's hope this one moves into the well-defined category soon!

    Can anyone point me to people who are relatively painless, gradual onset and XMRV positive? Tnx!
  20. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    I think a poll was started here on onset and XMRV; last time I read it 2 people with gradual onset tested positive for XMRV and 4 with acute onset had.

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