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XMRV Positive in the U.K.

Discussion in 'XMRV Testing, Treatment and Transmission' started by joyscobby, Jan 11, 2010.

  1. anne_likes_red

    anne_likes_red Senior Member

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    Joy

    I hope you and some of the others have got your own little support community going on.

    I'm guessing others will receive a + result too. Hope everyone is doing OK.

    Thanks for sharing your news.

    :hug::hug::hug:
  2. Orla

    Orla Senior Member

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    HI Joy, would you consider setting up a poll UK XMRV Test results? So that people could vote annoymously whether they had been tested or not, or whether they had been positive or not?

    Orla
  3. _Kim_

    _Kim_ Guest

    joyscobby,

    Thank you for being brave enough to be the first UK member here to share your VIPdx results.

    I hope you find support for all of the emotions that may surface over the next days and weeks.

    We are here for you.

    XO
    Kim
    p.s. I changed the thread title. Is the wording okay with you?
  4. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    joyscobby, thank you so much for sharing this important news with us. What a journey you've had, and now a whole 'nother chapter - hopefully one involving answers and a return to health.
  5. Advocate

    Advocate Senior Member

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    Hi Joy,

    Ditto.

    :hug:
  6. hensue

    hensue Senior Member

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    Hi Joy,

    You are brave and the first in the UK to post results. As far as what it means? Hopefully with all these smart people on this board and all those working hard for us we will find out soon. Wanted to tell you Thanks for posting your results.

    GOOD LUCK
    would post a hug but dont know how?
  7. Thanks for posting this news JoyScooby, I'm sure you're very excited and I'm glad you got the result you hoped for.

    For those puzzled that there was no testing in Europe for XMRV, around 20 of us in the UK got tested in late December as a special arrangement with the WPI.
    This was kindly enabled by a lady on this very forum with severe ME, whom we are all very grateful to - and the WPI also for giving us the initial chance of validation.

    UK XMRV results from WPI are coming out this week and being sent to patients.

    I'm waiting for my result too.

    If many of us test positive, we should set up an Anti Imperial College news alert, as they stated openly that there is no XMRV in the UK.
    This is obviously false and people should know the truth.

    Thanks for starting off the truth JoyScooby, many people with vested interests are going to get a reality check that XMRV is clearly not an American WPI 'Phenomena'
    but a world wide retroviral infection - like HIV.

    This is a disaster for the Wessely School. Once positive, patients are free to contact Newspapers and write up their positive XMRV results on 'Blogs' on the Internet.

    Very exciting times.
  8. Kati

    Kati Patient in training

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    I think that should many of you test+ for XMRV, there should be a press release- possibly through the ME association??? To BBC and other journals including PLOS ONE that XMRV actually swam across the Atlantic.

    The war is on. Wessley - and Reeves can eat their hats.
    CBT will not cure XMRV.
  9. Hysterical Woman

    Hysterical Woman Senior Member

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    WOW Joyscobby!!

    What a belated birthday surprise!!!

    Here is hoping that whatever happens next, that it sets you on a path to better and better health! Thank you so much for sharing this with us. I feel priviledged.

    Group Hug!![video]http://www.michelleblade.com/2008/02/group-hug-video.html[/video]


    Maxine
  10. anne_likes_red

    anne_likes_red Senior Member

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    Nice to meet another of the UK testing crowd! :D I'm glad you were able to get tested, and thanks for joining this forum!

    Did they state there was no XMRV or that they had concluded from their study there was none?
    We all know Wessley's (lets call it his shall we?) study differed in the methodology used. Hopefully, now with positives coming to light in the UK people (and the press and the scientific community) will start asking hard questions about how the UK study looked for XMRV, even in their flawed patient selection, and how valid the results are.
  11. starryeyes

    starryeyes Senior Member

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    Congrats joyscobby! Thank you so much for sharing this with us. I know we're all relieved to see you post online that you're positive given the latest scuttlebutt.

    Read All About It: XMRV is in ME in the UK!! :sofa:

    :hug:((((((((Hugs))))))))))) and I am praying that XMRV will be treatable and that some day you will be much better.

    tee
  12. flex

    flex *****

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    It seems so weird to say Congrats!!


    But you Know what I mean.

    HOOOOOOORAAHHHH!!!!

    Flex
  13. Molly29

    Molly29

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    Unable to find XMRV in any of almost 200 CFS patients in Britain??????

    Congrats! AND...

    "One possible explanation is that one of the two groups of scientists made a mistake in their testing, something that both are adamant is not the case. As scientific punch-ups go, this is shaping up to be a good one, with blows (albeit polite ones) being thrown across the Atlantic.

    The Americans say that the British were not looking for DNA directly in white blood cells, and by using whole blood they diluted their samples too much. Kerpow! They add that the design of the British experiment did not prove that it could actually pick up XMRV in patients. Zapp! Finally, they say the British must prove they can actually detect XMRV in one of the American samples, something that they would have been delighted to provide had they been asked. Biff!

    For their part, the British insist their controls are just fine and hint that the American laboratory may have had contamination problems. Blam! They also add that a number of other labs are about to publish results of similar studies looking for XMRV and say they are very confident about their findings. Splat!

    Frustrating though this may be for sufferers from CFS, it is discussions like these, as one group of researchers tries to replicate the results of another, that lead to scientific progress. In the meantime, one of the companies licensed to do the American XMRV test claims that of the 300 patients, including some from Britain, who have sent samples in for testing, 36% have tested positive for XMRV. It seems likely that the causes of CFS will continue to be a subject of controversy for a while yet."




    Science & Technology
    Chronic fatigue syndrome

    Seconds out
    Jan 7th 2010
    From The Economist print edition

    A fight over the cause of a mysterious disease


    LAST October a discovery was made that brought hope to millions of sufferers from chronic fatigue syndrome (CFS). A group of researchers found a bug with the long-winded name of xenotropic murine leukaemia virus-related virus (XMRV) in 67% of American patients with CFS (as opposed to 4% of healthy controls). This figure increased dramatically when the patients were retested.

    The news was exciting for patients because CFS is a debilitating disorder of long-term tiredness for which there is no simple explanation, and certainly no sniff of a cure. It has even attracted a certain degree of media scepticismbeing dubbed, at one time, yuppie flu.

    XMRV is certainly a reasonable candidate to cause CFS. It has also been implicated in prostate cancer, breast cancer and lymphoma. Last years study, published in Science by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, and her colleagues, caused such excitement that it quickly led to commercial testing for XMRV infection. Furthermore, because XMRV is a retrovirus, like HIV, several preclinical studies have been looking at whether antiretroviral drugs might have an effect on it. One of these studies has found that of the ten licensed compounds tested, only AZT inhibited replication of XMRV.

    The new year, though, has brought new complications, in the form of a study that has been unable to replicate Dr Mikovitss work. Writing in the Public Library of Science, Otto Erlwein of Imperial College, London, and his colleagues report that they are unable to find XMRV in any of almost 200 CFS patients in Britain.

    One possible explanation is that one of the two groups of scientists made a mistake in their testing, something that both are adamant is not the case. As scientific punch-ups go, this is shaping up to be a good one, with blows (albeit polite ones) being thrown across the Atlantic.

    The Americans say that the British were not looking for DNA directly in white blood cells, and by using whole blood they diluted their samples too much. Kerpow! They add that the design of the British experiment did not prove that it could actually pick up XMRV in patients. Zapp! Finally, they say the British must prove they can actually detect XMRV in one of the American samples, something that they would have been delighted to provide had they been asked. Biff!

    For their part, the British insist their controls are just fine and hint that the American laboratory may have had contamination problems. Blam! They also add that a number of other labs are about to publish results of similar studies looking for XMRV and say they are very confident about their findings. Splat!

    Frustrating though this may be for sufferers from CFS, it is discussions like these, as one group of researchers tries to replicate the results of another, that lead to scientific progress. In the meantime, one of the companies licensed to do the American XMRV test claims that of the 300 patients, including some from Britain, who have sent samples in for testing, 36% have tested positive for XMRV. It seems likely that the causes of CFS will continue to be a subject of controversy for a while yet.
  14. kwietsol

    kwietsol

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    Professor Myra McClure, one of the Imperial College London investigators, told BBC news:
    "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK." ​

    Joyscobby, I"m so glad that this is great news for you. It certainly makes ME happy. May there be many more of you getting positive results and may the news be broadcast far and wide.

    If Dr. McClure didn't have second thoughts about her involvement in this Wessely study once she read the PLoS One comments about sample selection, I bet she will very soon. :D
  15. I'm sort of happy and sad for you but mainly happy... it must have been an almighty sigh of juddering relief when you got that positive test.
    Weirdly, such a different reaction from somebody testing positive for HIV test but a disease that is just as serious. I'm sure we can all draw conclusions from that.

    Do you have any idea how other people in the UK could get tested?
  16. flybro

    flybro Senior Member

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    pluto
    Joyscobby, Thank you so so so very very very much.

    It is horrendous that this news has given me a much needed lift today.

    Can't thank you enough.

    also same as flex said

    It seems so weird to say Congrats!!


    But you Know what I mean.

    HOOOOOOORAAHHHH!!!!
  17. natasa778

    natasa778 Senior Member

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    Thanks for this Joyscobby!

    Would you mind sharing the technicalities of how you organised shipping of samples - I suppose the doc did it for the whole group? Do you know what the requirements were, obviously overnight but is there a max amount of time for samples to reach the lab? Do you know how much shipping was, or what it added to the price of tests?
    Thanks in advance.
  18. gracenote

    gracenote All shall be well . . .

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    I'm wondering if the difference is that many people being diagnosed with HIV are still healthy when they get their diagnosis so this is a shock of impending health problems. Those of us who have been ill for so long are wanting to know why we are so ill. It makes sense to me that even a difficult explanation is welcome. At least now we can move forward.

    joyscobby, I'm with you. I'm still waiting for my test results and have been wondering how I'll feel either way. I so appreciate you sharing with us and I hope you continue to share as you can. Despite all our curiosity, please put yourself and your own needs first and THEN if you can we would love to hear every little detail.

    Take care.
  19. Funkster

    Funkster

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    RE: RE: RE: RE: RE: RE: RE: Results uninterpretable
    mmcclure replied to mmcclure on 11 Jan 2010 at 21:18 GMT
    Re spiking experiment:

    We randomly chose 22 of the CFS patient samples and spiked the DNA with 10 copies of XMRV plasmid DNA. The XMRV /MLVsequences were amplified in every case. Positive and negative controls worked beautifully. All conditions for the PCR were as described in the paper.

    Competing interests declared: Author
  20. CBS

    CBS Senior Member

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    Gracenote,

    This makes a lot of intuitive sense. I've always felt that where you were headed was more important than where you were when it comes to your outlook on life.

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