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The Fight is on...Imperial College XMRV Study

Discussion in 'XMRV Research and Replication Studies' started by George, Jan 5, 2010.

  1. Koan

    Koan Be the change.

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    Re S Vernon

    Orla wrote
    I actually think that was pretty cagey. They all but said it and she held them to it. Yeah, they probably don't really mean it but she held them to what they said. Go Vernon!

    Hvs wrote
    I think this was pretty cagey, too. Vernon gave them nothing to refute. Smart girl.
     
  2. Kati

    Kati Patient in training

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    Thank you to Suzanne Vernon and CAA for very quick response and analysis on this very negative study. I think we can all breathe in relief and sore people in the UK have to be really stressed out right now...
     
  3. Elliot

    Elliot

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    As Carl Sagan put, science in its best form is self regulating, when a study is published others will try and rip it apart. That's a healthy look as it means that only the most fool-proof and evidence based studies can get through. So lets hope those pirhanas are out in full force when they wake up tomorrow morning to this new study. ;)
     
  4. fresh_eyes

    fresh_eyes happy to be here

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    Where did they almost say it, Koan?
     
  5. _Kim_

    _Kim_ Guest

    What I wanna know is:

    Who are these 186 patients? And why are they helping Simon Wessely smash their hopes of getting treatment?
     
  6. George

    George Guest

    Dang we are gooooodddd!

    Great catch Valia

    O.K. who wants to e-mail this nice reporter and point her in the direction of Dr. Susan Vernon's statement???? Anybody, Anybody????

    @Koan - I agree with you Koan, Dr. Vernon handled this very well.
     
  7. Alice Band

    Alice Band PWME - ME by Ramsay

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    Some of us have sent our blood to VIP for XMRV testing (using a lab in London). We await results.

    I presume that if some are positive Wessely and co will argue that it is a mouse contaminant or similar?
     
  8. starryeyes

    starryeyes Senior Member

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    Also, didn't Mikovits say that she had tested 500 PWC in London back in October and that the results were turning out the same numbers as in the U.S. for infection of XMRV?

    Excellent point Levi! Especially a psych who claims he has distanced himself from ME.
     
  9. CJB

    CJB Senior Member

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    :scared: I can't leave this thread. I've got to pee.
     
  10. _Kim_

    _Kim_ Guest

  11. fresh_eyes

    fresh_eyes happy to be here

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    This just in from the Independent:

    http://www.independent.co.uk/news/s...und-the-cause-of-me-is-premature-1859003.html

    Scientists' claim to have found the cause of ME is 'premature'

    British researchers say US team should have waited for more evidence of viral link before publishing findings

    By Steve Connor, Science Editor

    Wednesday, 6 January 2010

    British scientists have failed to find a link between a new kind of retrovirus and chronic fatigue syndrome in a study that contradicts previous findings by American researchers claiming to have found a possible viral cause of the debilitating condition.

    The UK scientists could not detect a recently discovered virus called XMRV in any of the blood samples collected from 186 patients with chronic fatigue syndrome, which is also known as myalgic encephalomyelitis (ME). The researchers believe this demonstrates that XMRV is not implicated in the illness, at least not in Britain.

    One scientist involved in the latest research also criticised the previous study, which was published in the peer-reviewed journal Science, saying it was premature and that the journal should have waited until there was stronger, corroborating evidence of such a link.
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    "When you've got such a stunning result you want to be absolutely clear that you are 1,000 per cent right and there are things in that [previous study] I would not have done. I would have waited. I would have stalled a little," said Professor Myra McClure, a virologist at Imperial College London and a leading member of the British research team.

    Chronic fatigue syndrome affects about three in every 1,000 people and results in severe physical and mental exhaustion. After the release of the apparent link with XMRV, many patients have asked their doctors about being tested for the virus and whether they should be taking antiretroviral drugs.

    The earlier study, published last October, was carried out by a team led by Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada. They found the murine leukaemia virus-related virus (XMRV) in blood samples of 68 of 101 patients diagnosed with chronic fatigue syndrome. Just eight out of 101 healthy "controls" drawn at random from the same parts of the US also tested positive, suggesting that XMRV played a key role in triggering the condition. Dr Mikovits told The Independent at the time that further blood testing had found the virus in as many as 95 per cent of patients with chronic fatigue syndrome. She also said that preliminary testing on a batch of blood samples sent from Britain showed that the "same percentages are holding up".

    However, Professor McClure's study, published in the online journal Plos One, failed to find any evidence of the XMRV's DNA in blood samples taken from 186 patients who had been diagnosed with chronic fatigue syndrome for at least four years. She also failed to find any virus related to XMRV.

    "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK. The US study had some dramatic results that implied people with the illness could be treated with antiretrovirals. Our recommendation to people with chronic fatigue syndrome would be not to change their treatment regime, because our results suggest that antiretroviral would not be an effective treatment for the condition," Professor McClure said.

    The British study was carried out under the most rigorous testing conditions that minimised the risk of cross contamination, Professor McClure said. The testing was also conducted "blind" meaning the scientists involved did not know which samples came from patients and which came from the healthy controls until the end of the experiment.

    The DNA test used to detect the presence of XMRV in the blood samples is so sensitive that it would have shown up positive if just one molecule of the virus's genetic material had been present in the blood samples. However, the tests were only carried out on blood. It is possible the XMRV virus integrates its genetic material into other tissues of the body, although this is not supported by the American findings.

    Anthony Cleare, reader in psychiatric neuroendocrinology at King's College London, which collected the blood samples, said the apparent link between chronic fatigue syndrome and XMRV generated a lot of excitement among doctors and patients but the latest study had failed to replicate those results.
     
  12. parvofighter

    parvofighter Senior Member

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    I'm a donkey on the edge

    Geez Weldman and George - right back atcha! :D:D:D:D

    I hang my head in shame. Seriously tho - I'm not trying to scare folks - just inject humor while snuffing (snuffling) out some silliness when it threatens to get us off the scientifically rigorous track. After 11 years with ME/CFS, living in the mountains of credible research on viral complications - and the ludicrous medical denialism that goes with it, I am indeed a nerd on a mission.

    I keep thinking of Eddy Murphy in Shrek when he says, "I'm a donkey on the EDGE!"

    [​IMG]
    And George, as another canophile - love the doggy references! Living here with 12 canine paws - haven't been able to walk 'em in years. Can't WAIT till I can! (wagging tails, more snuffling) :Retro smile::victory:
     
  13. George

    George Guest

    Time to marshall the troups!

    The article has gone viral, I've got 5 alerts on my Google for articles already quoting the BBC article. We knew it would happen. So starting tomorrow or tonight for anyone who's up to it we need to start e-mailing the the CAA rebuttal to as may as we can. A good reporter reports both sides of a story so the faster we get it out the faster they can amend their articles.

    What da ya say, ya all game??? Woof!!!
     
  14. Koan

    Koan Be the change.

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    and later

    yes, they are probably thinking "I'm not crazy, I'm just a little unwell" and that we are incapacitated because we are barking but that is not what they say. What they say is more reasonably interpreted as referring to an organic illness than an illness belief. One can think one is unwell but that is not the same thing as being, according to professional doctors :mask:, markedly unwell. They said it.

    :victory:
     
  15. rebecca1995

    rebecca1995 Apple, anyone?

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    CALL FOR PRESS RELEASE FROM CAA/VERNON

    I hope that the CAA will issue a press release written by Dr. Vernon repsonding to the PLoS study. The statement on the CAA website, with some tailoring, should be fine.

    They should blanket all the UK newspapers as well as the major US papers/media as quickly as possible. We know from politics how important it is to respond to opponents in the same news cycle. Getting the press release out tomorrow, first thing, could stop biased reporting of the study. It's important, for funding and exposure, to maintain a perception in the mainstream media that XMRV could still be important to ME/CFS, or a subset of it.

    This is especially urgent in light of the recent Guardian aritlce, posted above, which shows the Wessely PR machine is already in action.
     
  16. Lily

    Lily *Believe*

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    Ha! I know what you mean.......there's been an average of 26 posts/hour for the last 6 hours!!! Great ones too!!! You guys are all AWESOME!!:victory::sofa::victory:
     
  17. CJB

    CJB Senior Member

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    From the abstract:

    Quote

    advent of PCR in particular has dramatically enhanced our ability to detect novel viral sequences in human tissues. However, DNA amplification techniques have also increased the potential for false-positive detection due to contamination.Unquote
     
  18. fresh_eyes

    fresh_eyes happy to be here

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    Mm, yes. MARKEDLY unwell. They said it!
     
  19. George

    George Guest

    Roflmto

    PEE BREAK!!:tongue:
     
  20. Koan

    Koan Be the change.

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    Yes! Everything about this study, including first the secrecy and then the huge press, is all about PR. Now, our PR arm must respond effectively.

    We must also remember that, so long as good science can continue, we will be alright at the end of the day. Could be a long day, though.
     

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