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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. Alice Band

    Alice Band PWME - ME by Ramsay

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    Sadly, the BBC are very fond of Wessely. When the USA Senate did the report on Gulf War Syndrome, the BBC had Wessely on straight away to tell us that they were wrong - and he was still right. There was no serious attempt by the news program to debate the issues, just pure PR for him.
  2. alice1

    alice1 Senior Member

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    And we've weathered this how? I can be slow ok.
    Never mind I just read the above posts..by the time I wrote and sent this there were already 6 messages.
    Geez you are fast! Great responce from Suzanne Vernon.
  3. George

    George Guest

    Hang in there Alice. Check out Nuts and Bolts for help and PM me any time for more info on how to do something. I'll be glad to help if I can.

    If you can highlight the text on the CFIDS web site then go up to the top of your browser and choose "edit" and then choose "copy" come back here, click reply to thread and click in the box once it comes up. When you see the curser blinking in the box then go up to the top of your browser to "edit" and choose "paste". Then click the Post Quick Reply button. Give it a try if you are feeling adventurous.
  4. hvs

    hvs Senior Member

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    I read this as you do, and if we're correct, then this study is completely, immediately dismissible.
  5. Dr. Yes

    Dr. Yes Shame on You

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    Not yet!! We still need to see that this paper is properly critiqued on both sides of the Atlantic... Relevant doctors (like Dr. Vernon, not to mention Klimas et al) should write in to the publishing journal and raise the same questions we did (plus any of their own) about the selection criteria, protocols, and hyperbolic claims in this study.. And yes, again, Dr. Vernon's statement really has to be conveyed to the BBC and the Associated Press, at the very least.. with an eye being kept open for major newspapers where this story might find itself in the coming days..

    Jenny S. ( I just... I just can't bring myself to call you "J-spot"), if you're still reading this... Is the CAA already planning this, and if not, could you please raise this idea with them? As garcia noted, we have accomplished nothing if we are just "preaching to the choir".
  6. Hysterical Woman

    Hysterical Woman Senior Member

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    Geez Parvo

    Some interesting stuff! Thanks for digging it up.


    And geez, if this is an example of what you can do when you are sick, I would be scared to see what you could do if you were well!!

    :Retro tongue:

    Maxine

    P.S. remind me never to make you my enemy.
  7. Advocate

    Advocate Senior Member

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    Hi Levi,

    Does the article say it was edited by someone from UCSF or do you know this from another source? I couldn't find it. (I'm only up to post #81. Maybe you elaborated in a later post.)
  8. gracenote

    gracenote All shall be well . . .

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    Wessely on Neuroendocrine Dysfunction

    Here is a quote from a currently being sold medical online textbook. I don't know if this helps or not.

  9. Cort

    Cort Phoenix Rising Founder

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    I think that Dr. Vernon's just impeccably objective. That got her in trouble when the study was first published but it worked out well here. Basically I feel like I can trust her - which is very good - because we don't really have anybody else out there who's either able or willing to publicly comment on the technical details. We're basically at sea here.

    The CAA doesn't have a dog in this fight; its not their research or their finding; they can take a nice objective stance. They went through the first retroviral discovery and all the controversy that that caused - and I'm sure they have no desire at all to go through another process like that. They want this to be done right and it sounds like that DHHS Study will be done right.

    I hope the CAA is in touch with other media outlets to give the other view on the study. We'll see if they include the 'buts' in the study.
  10. _Kim_

    _Kim_ Guest

    This is between the Abstract and the Body of the Article

    [​IMG]
  11. Hysterical Woman

    Hysterical Woman Senior Member

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    What are the editorial responsibilities in something like this?

    Maxine
  12. Orla

    Orla Senior Member

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    On thing from the CAA statement (otherwise a useful statement):

    Simon Wessely and Anthon Cleare do not recognise ME/CFS as an organic condition. They accept there can be a viral trigger (mostly probably because it cannot be denied!) but they think that it is abnormal beliefs and behaviours that keep us unwell.

    Orla
  13. hvs

    hvs Senior Member

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    Agreed. Their timing was great. Thumbs up. Nice.
    Dr. Vernon is qualified to criticize their practices, and I'm not, so it's great that she did that.
    It's too bad that she didn't draw attention to the poor subject pool, which appears to be Reeves Disease/Oxford people who aren't necessarily sick.
  14. George

    George Guest

    Laughing and waggin, laughin and waggin

    I love you Parvo (big sloppy lick) your awesome.

    We weathered it because we caught it 12 minutes after it hit the web (the BBC article) No one could have got to the information faster (except Dr. Vernon (grins)) We got the paper with in minutes of it's publication. We read it, we dissected it (correctly), we knew it was not a credible replication work, The CAA via Dr. Susan Vernon refuted the valid points of the paper in a clear and polite manner. (unlike the discussion portion of the paper which took swipes at the science paper) We are aware that the work needs to be refuted in all major papers and journals. We will over the coming weeks do our part to e-mail, comment, and otherwise let any media persons know the truth. I believe that the CAA will do the same.

    That's advocacy in action!!!!

    I ain't worried 'bout nothin' (cept the next study (grins))
  15. alice1

    alice1 Senior Member

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    You lost me at 'if'..I will try later(promise) as I need to use the last bit of energy for a wee workout or I'll never do one again.
  16. starryeyes

    starryeyes Senior Member

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    Wait a second.. none of the people here at PR that are from the UK have been tested for XMRV right? I need to see what your tests come out as and you need to be tested by the WPI itself.
  17. alice1

    alice1 Senior Member

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    Good point Teejkay. Thanks George I can see clearly now.
    You are all amazing.
  18. _Kim_

    _Kim_ Guest

    Who is Douglas F. Nixon M.D., Ph.D.?

    Associate Investigator
    Gladstone Institute of Virology and Immunology
    Associate Professor of Medicine
    University of California, San Francisco
    Email: dnixon@gladstone.ucsf.edu
    Telephone: 415-734-4815
    Fax: 415-553-6299

  19. valia

    valia Senior Member

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    Guardian uk

    This just in from Google Alert

    http://www.guardian.co.uk/lifeandstyle/2010/jan/06/chronic-fatigue-syndrome-xmrv-virus



    Research casts doubt over US chronic fatigue virus claim


    UK study fails to find proof of headline-grabbing American study into test for ME/CFS



    * Sarah Boseley
    * The Guardian, Wednesday 6 January 2010
    * Article history


    Serious doubt has been cast on the theory that made headlines around the world last October that chronic fatigue syndrome, or ME, is caused by a new retrovirus.

    Scientists at Imperial and King's universities in London have attempted to replicate work carried out in the US and published in the journal Science last autumn. But they found not one of the 186 patients they studied had a trace of the novel virus, called XMRV, in their blood samples.

    The theory, which made headlines around the world last October, gave hope to many. About three in every 1,000 people, possibly more, suffer from chronic fatigue syndrome (CFS), formerly known as myalgic encephalomyelitis (ME), which is a condition described one of the authors of the paper, Dr Anthony Cleare, reader in psychiatric neuroendocrinology at King's, as serious and debilitating and extremely frustrating for sufferers who do not know its cause.

    The study in Science, by Vincent Lombardi and colleagues at a small private pathology laboratory in Reno, Nevada, sent many patients hurrying to doctors for tests and antiretroviral drugs.

    Lombardi and his team reported that they had found the virus XMRV in 67% of the CFS patients they tested. Later they said they had found it in 95% of patients. Lombardi has devised and sells a test for the virus in north America.

    Scientists around the world embarked on their own tests, and Dr Cleare and his colleagues are the first to publish results. "If this research is replicated, it is potentially a huge breakthrough in understanding this condition," he said.

    King's College hospital runs a specialised CFS/ME clinic. The researchers selected blood samples from 186 patients who were, they said, typical of those who attend. They had suffered for years, were very disabled by the disease and more than 90% said their illness definitely or probably started after a viral infection.

    They sent the samples to a team at Imperial's retrovirology labs. Professor Myra McClure, from the division of medicine at Imperial College London and one of the authors of the study published today by PloS One (Public Library of Science), said: "Our research was carried out under rigorous conditions. We used very sensitive testing methods to look for the virus. If it had been there, we would have found it.

    "The lab in which we carried out the analysis had never housed any of the murine leukaemia viruses related to XMRV, and we took great care to ensure there was no contamination. We are confident our results show there is no link between XMRV and CFS, at least in the UK." The authors say there is no evidence to justify testing people with CFS for the virus or putting them on drug treatment.
  20. fresh_eyes

    fresh_eyes happy to be here

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    I agree with Orla that I can't find support for this bit of Vernon's (very good) statement in the paper:

    Anybody?

    Also I have to agree with Dr Yes that our work is far from done - WE know this study is crap :Retro smile:, but the rest of the world does not know that yet.

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