Once again XMRV not detected

Discussion in 'Fibromyalgia Main Forum' started by TigerLilea, Feb 15, 2010.

  1. TigerLilea

    TigerLilea Active Member

    Yet another study out of the UK could not detect XMRV in CFS patients. I trust this study a little more than most coming out of the UK as Dr. John W. Gow and Dr. Jonathan Kerr were involved this time.


    "In summary, we have studied 299 DNA samples and 565 serum samples for
    evidence of XMRV infection. We have not identified XMRV DNA in any samples by
    PCR, however, some serum samples were able to neutralise XMRV infectivity in our
    assay. Only one of these positive sera came from a CFS patient, implying that there
    is no association between XMRV infection and CFS. Furthermore, most of the positive
    sera were also able to neutralise MLV particles pseudotyped with other envelope
    proteins, indicating there may be cross reactivity with other retroviruses and even
    other enveloped viruses. It therefore seems unlikely that these responses were
    elicited by XMRV. However, the detection of neutralising activity that did not
    neutralise VSV-G pseudotyped MLV in at least four human sera may indicate that
    XMRV infection does occur at in the general population, although the outcome of
    such infections is currently uncertain."

    To see the entire report go to http://tinyurl.com/yda6kmt

    [This Message was Edited on 02/15/2010]
  2. Elisa

    Elisa Member


    I read that too - anyone with any ideas on what's going on with this? Is it a methological issue?

    This seems more worrisome and distressing to me because of Dr Kerr's involvement. WPI needs to find out what's happening and partake in testing the blood in tandem with these studies to ascertain if it's methological/procedural - before we lose steam and hope...

    God Bless,


  3. TigerLilea

    TigerLilea Active Member

    There was another study done in Scotland and one of the doctors there has stated as others have, that he thinks that it is the WPI whose results are incorrect. Even with cancer, no other country has been able to connect XMRV to prostate cancer other than the US. I'm beginning to think that XMRV is going to end up being another deadend as far as CFS is concerned.
  4. victoria

    victoria New Member

    Apart from the political controversy over CF/FM/ME....

    you wouldn't think the results would differ as to the prostate cancer & XMRV.

    I also really wonder what, if anything, is different in what or how they're testing...


  5. aftermath

    aftermath New Member

    This is really NOT good.

    I hope I'm wrong, but it looks very possible that XMRV may go the way for Dr. Montoya's work on HHV-6 with regard to being a possible cause of this illness.

    I really wish that the WPI folk would have been more reserved in their initial assessments.
  6. ladybugmandy

    ladybugmandy Member

    there have already been several people who sent blood to VIP, who tested positive for XMRV - even people from the UK. VIP has never had mice in their labs.

    how could this study not even have found ONE person with the virus?

    it has to be a question of methodology...nothing else makes sense!
  7. QuayMan

    QuayMan Member


    I'm guessing you are referring to this statement from the Scottish Chief Medical Officer (equivalent to the surgeon general in the US):
    "I understand thet Prof. Peter Simmonds has already looked for evidence of XMRV in stored samples from CFS patients and has been unable to find any evidence of this infection."
    Somebody contacted Prof. Simmonds and he sent the following reply which shows the Scottish CMO was wrong to say Prof. Simmonds had tested CFS samples:


    Dear XXXXX

    Thanks for the clarification. The email from Harry Burns represents
    advice he received from the Scottish Consultant Virology Group. It is
    wrong, however, on the crucial point that you highlighted in your email.

    We have only screened samples from the general population and from small
    groups of individuals at risk from HIV-1 or HCV infection. These were
    obtained from the Medical Research Councils tissue samples archive
    organised by Professor Jeanne Bell in Pathology, University of
    Edinburgh. I would stress that we have not tested any kind of samples
    from CFS sufferers, nor indeed do we have access to them.

    Any investigation of this issue would require prospective collection of
    patient-consented samples from CFS sufferers and controls along with
    ethical approval from the local ethics committee, drawing up adequate
    case definitions etc.

    Although the issue has been discussed in outline
    amongst the clinical virologists and Infections Disease physicians in
    Scotland, a specific aetiological investigations is not being actively
    pursued given the negative findings from the Imperial study. We are
    however, continuing to monitor the situation and will review the
    decision if new data come to light.

    I am copying this email to Harry Burns so that the statement he made
    about testing might be corrected in future.

    Yours sincerely

    Peter Simmonds
    [This Message was Edited on 02/17/2010]
  8. cfs since 1998

    cfs since 1998 New Member

    Even if XMRV does not cause CFS they should have been able to find it in some people just due to random chance. Finding zero XMRV positives in CFS patients and controls says more about their testing methodology than it does about the presence of XMRV. This study again used a spike sample as a control and not a confirmed positive sample.

    If they had found XMRV in, say, 3% of their CFS patients and 3% of controls, that would be a huge blow to us. But their results of nothing mean exactly that--nothing.

    I am going to assume that negative studies will continue to pop up here and there until scientists come up with better testing techniques, but WPI's findings will be confirmed eventually. We just have to wait for it.[This Message was Edited on 02/16/2010]
  9. chngthnmtoME

    chngthnmtoME New Member

    This is extremely important to me, as I continued to breastfeed my daughter through this controversy, believing that it's more likely she's getting immunity than a retrovirus. I knew years ago about retroviral findings, but no one can say yes or no for sure about breastfeeding. I'm slowly weaning her simply because I'm pregnant again and my supply is so low. In my heart I feel XMRV is the cause- I got Mono 25+ years ago and it just didn't go away. But I'm also afraid, afraid that I might have given/be giving my beautiful daughter, who has Down syndrome, XMRV.

    However, I still believe the Brits didn't use the correct case definition. Once you start tossing in people who have "only depression" (a slam against the mentally ill, so I don't like that phrase), you water down your sample pool. I have seen so many people who allegedly have this disease who do not have anything like what I have- they are misdiagnosed. And people who have "only depression" who are really, really physically ill. Until they test the people with ME/CFS and weed out the depressed, they aren't going to get test results that mean anything.

    So I just pray for my daughter, and myself. And I hope this retrovirus is too heavy to pass into breastmilk. If it does, though, my daughter will get tons of support and see the best doctor, Dr. Morris Papernik. I pray she doesn't have to see him ever, except as my passenger when I see him.
  10. Synapse

    Synapse New Member

    Hi, thank you so much for posting the email reply Quayman.

    Secondly, please everyone re-read this part of the quote from Peter Simmonds and understand how devastating for us in Scotland.

    ''...a specific aetiological investigations is not being actively pursued given the negative findings from the Imperial study.''

    So basically, thanks to the Imperial College Pro Psychiatric 'fatigue' samples from Kings CFS center patients down in London, there is no pursuit of XMRV research up here because the study failed.

    Thanks a bunch Simon Wessely for prolonging suffering.
  11. ladybugmandy

    ladybugmandy Member

    chng..may i ask..does dr. papernik treat xmrv? if so, how does he treat it?

    about the studies.dr. teitlebaum suggested that 10-20% of samples from each study be sent to WPI for testing so discrepancies can be found..thats a great idea.

    no way i can wait for another breakthrough. constant agony. very upsetting about the new study. but very unusual to find NO xmrv at all given that some people from europe are turning up positive on pheonix rising board.

    will see what dr. mikovits says on feb 20th.

    would be nice if UK found xmrv...more people would be involved in getting meds ready for us quicker. ugh
  12. Synapse

    Synapse New Member

    Thanks everyone for your excellent input and support.
    Some news today from the WPI below which is encouraging.

    WPI is aware of the recent UK study that was unable to detect the presence of XMRV in any CFS patient samples. Although researchers at the WPI were not involved in this project, our work in XMRV continues with researchers around the world. We look forward to the results of studies which replicate the methods used in the original research described in the journal Science in October, 2009.
    View more...

    Information Regarding XMRV Studies

    1. The authors of the Science paper established the existence of XMRV as an infectious human blood borne retrovirus for the first time in blood of patients diagnosed with Chronic Fatigue Syndrome (CFS). Previous studies had established the presence of XMRV sequences and protein in human prostate tissue.

    2. In the Science paper, the presence of XMRV in well-characterized patients with CFS was established using multiple technologies:

    a) PCR on nucleic acids from un-stimulated and stimulated white blood cells;
    b) XMRV protein expression from stimulated white blood cells;
    c) Virus isolation on the LNCaP cell line; and
    d) A specific antibody response to XMRV.

    3. The authors of the two UK studies did not attempt to “replicate” the WPI study. Replication requires that the same technologies be employed. The WPI sent reagents and information to several groups of researchers in an effort to support their replication studies. Neither UK study requested positive control blood, plasma or nucleic acids from the WPI.

    4. The collection, preparation and storage of DNA were completely different between the Science and UK papers. The latter studies do not show data on blood harvesting or storage. Nor do the studies disclose the quantity of isolated cells. Insufficient number of cells analyzed may result in failure to detect a low copy virus like XMRV, regardless of the sensitivity of the assay. Neither UK study provides detail to allow interpretation of how many white blood cells were analyzed.

    5. Patient population selection may differ between studies.

    6. The UK authors were unable to detect XMRV, even though 4% of healthy individuals were found to be infected in the US. Japanese scientists detected XMRV in 1.7% in healthy blood donors in Japan. The two previously identified human retroviruses have distinct geographical distributions.

    7. Perhaps the most important issue to focus on is the low level of XMRV in the blood. XMRV is present in such a small percentage of white blood cells that it is highly unlikely that either UK study’s PCR method could detect it using the methods described. Careful reading of the Science paper shows that increasing the amount of the virus by growing the white blood cells is usually required rather than using white blood cells directly purified from the body. When using PCR alone, the Science authors found that four samples needed to be taken at different times from the same patient in order for XMRV to be detected by PCR in freshly isolated white blood cells. More importantly, detection methods other than PCR showed that patients whose blood lacks sufficient amount of XMRV detectable by PCR are actually infected. This was proven by the isolation of viral proteins and the finding of infectious XMRV isolated from the indicator cell line LNCaP. The authors of the Retrovirology paper admit that their neutralization assay did not detect bacterially expressed XMRV gag and that positive control sera was needed to validate their assay. The WPI’s monoclonal antibodies specifically and sensitively completed the immune response demonstrating the assays sensitivity and specificity for XMRV envelope.

    Simply stated the only validated reliable methods for detecting XMRV in CFS patients, to date, are the methods described in Science. Failure to use these methods and validated reagents has resulted in the failure to detect XMRV. A failure to detect XMRV is not the same as absence of this virus in patients with CFS

    Source: http://www.wpinstitute.org/news/news_current.html
  13. TigerLilea

    TigerLilea Active Member

    After watching yesterday's Dr Oz on EBV and learning that it is still incurable, it got me thinking about XMRV. If there still isn't anything that can be done about EBV, why are we assuming that they will find a treatment for XMRV??
  14. cfs since 1998

    cfs since 1998 New Member

    There are no drugs that target EBV specifically because big pharma was never interested in developing one. Although, now there is a small privately owned pharma company developing a newer drug called valomaciclovir, they are doing trials in mononucleosis right now.
  15. ladybugmandy

    ladybugmandy Member

    there will be treatment for xmrv because it is a retrovirus, which is of greater concern than a herpes virus like EBV which almost everyone has.
  16. LadyCarol

    LadyCarol Member

    Any XMRV study has to replicate the WPI study, in other words it has to use the same domain of methodologies/technologies to provide scientific repeatability, using an alternative domain of methodologies/technologies risks introducing error into the process and hence a totally different outcome may result, thus resulting in confusion for the public. Once this replication research has been carried out by other research bodies then a clearly picture of XMRV and CFS/ME involvement will emerge in due time.

    WPI statements below :

    Source: http://www.wpinstitute.org/news/news_current.html

    Extract :

    February 18, 2010: WPI is aware of the recent UK study that was unable to detect the presence of XMRV in any CFS patient samples...view more...

    3. The authors of the two UK studies did not attempt to “replicate” the WPI study. Replication requires that the same technologies be employed. The WPI sent reagents and information to several groups of researchers in an effort to support their replication studies. Neither UK study requested positive control blood, plasma or nucleic acids from the WPI.

  17. LindaJones

    LindaJones New Member

    I think the research is important.
    Until there is a cure there needs to be a focus on educating the medical community about cfs and providing services for cfs patients.
    People with fibromyalgia go to a rheumatologist to help them manage their symptoms.
    Fibromyalgia is better known in the medical community than cfs.
    If you say fibromyalgia they know what is is. If you say cfs they don't know what it is.
  18. rickj44

    rickj44 Member

    IT all comes down too $$$$ why would a drug company spend millions and billion's to develop a medication that may cure or help people. These same people are spending millions on medication's to cope with the illness they have. If the illness is not killing people, then the drug company has no pressure by the Government too develop a cure.
    we will always be on the back burner.
  19. ladybugmandy

    ladybugmandy Member

    yup. the only people really interested in cures are the organizations that are funded by patients and the gov't. there are only a handful of people trying to erdaicate HIV from the body (i think) but plenty of pharmaceutical companies coming out with better and better drugs to take lifelong...and thats where the real money is.
  20. slammed

    slammed Member

    The valuable time of the Whittemore Peterson scientists is being used in defending their highly validated study against the inferior efforts of UK studies that fail to replicate WPI methodology.

    The time involved in Dr. Mikovits' (et al) efforts, is time being lost on their work to bring medication into the anti-XMRV battlefield. As someone who is currently very ill, and who is eager to try the drugs that come from the on going negotiations and development, I am dismayed to see valuable time having to be spent on defending superior science. I am hopeful this is the end of "defending" until after the drugs are ready.