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XMRV CFS UK study #II

Discussion in 'XMRV Research and Replication Studies' started by Orla, Feb 15, 2010.

  1. Orla

    Orla Senior Member

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    This is a statement from he UK ME Association.

    MAY BE REPOSTED

    ABSENCE OF XENOTROPIC MURINE LEUKAEMIA VIRUS-RELATED VIRUS (XMRV) IN UK PATIENTS WITH CHRONIC FATIGUE SYNDROME

    RETROVIROLOGY: 2010, 7, 10

    A second UK research group has today (15 February 2010) reported that they have been unable to find any evidence of XMRV infection in people with ME/CFS.

    The research, which has been published in the on-line edition of Retrovirology, was carried out by a collaborative of very reputable virologists and retrovirologists. The group includes two researchers (ie Professor John Gow and Dr Jonathan Kerr) who are already involved in biomedical research into various aspects of ME/CFS. Dr Jonathan Stoye, from the National Institute for Medical Research, co-authored the editorial in Science that accompanied the paper from the American group which first raised the possibility of a link between XMRV and ME/CFS back in October 2009.

    The UK research involved the use of blood samples taken from two cohorts involving 170 people with CFS and 395 controls.

    They looked for evidence of XMRV infection using quantitative PCR (polymerase chain reaction) to check for the presence of viral nucleic acids (DNA) and a viral neutralisation assay to try and detect an anti-XMRV immune response.

    The authors report that they have not identified XMRV DNA (ie genetic material) in any samples using PCR (0/299). Some samples showed XMRV neutralising activity (26/565) but only one of these positive sera came from a CFS patient.

    Those involved in this replication study concluded that:

    No association between XMRV infection and CFS was observed in the samples tested, either by PCR or serological methodologies. The non-specific neutralisation observed in multiple serum samples suggests that it is unlikely that these responses were elicited by XMRV and highlights the danger of over-estimating XMRV frequency based on serological assays. In spite of this, we believe that the detection of neutralising activity did not inhibit VSV-G pseudotyped MLV in at least four human samples indicates that XMRV infection may occur in the general population, although with currently uncertain outcomes

    The ME Association advice on XMRV testing remains the same. We do not believe there is any point, at present, in spending a large sum of money on a blood test that has not yet been shown to be a diagnostic marker for ME/CFS or an aid to management. The ME Association will be issuing a more detailed position statement on this UK research later.

    An abstract of the research paper can be accessed here: http://www.retrovirology.com/content/7/1/10/abstract The full paper can be accessed via a provisional PDF on the Retrovirologity journal site.

    The most recent MEA summary on XMRV can be accessed using the Quick Links section on the MEA website: http://www.meassociation.org.uk

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    ENDS

    Edits from Orla: Some of the researchers (e.g. Kerr and Gow) involved in this study have an established history of biomedical investigation into ME/CFS and have a non-psychiatric view of ME/CFS. Kerr seems to be working with the WPI on other projects, see http://www.wpinstitute.org/research/research_basic.html and Sept 2009 http://www.wpinstitute.org/news/news_current.html so I would guess that there had been some discussion between them re XMRV.

    This latest UK paper states that: This work was supported by the UK Medical Research Council (file reference (KB)U117592729 and (JS) U117512710), The Wellcome Trust (grant ID 084955) and CFS Research Foundation, UK.

    This is a link to a press release from the UK Medical Research Council http://www.nimr.mrc.ac.uk/news/2010/xmrv-cfs/index.htm suggesting the story is not over yet:

    " Our study failed to replicate the results of the US study despite using what we believe to be a more sensitive test. We found no association between XMRV and chronic fatigue syndrome. However, chronic fatigue syndrome may encompass a spectrum of different conditions providing a possible explanation for this discrepancy.

    Chronic fatigue syndrome affects a large number of people and our findings are likely to be very disappointing to these patients, their families and their friends. It is important that we keep an open mind about new scientific discoveries which point to possible causes of this often very serious condition. Replication is an important part of the scientific method and, as the initial findings have not yet been replicated, I think it will be important to develop standardised samples and assays for XMRV that can be rapidly tested by different laboratories around the world."


    There is lot of comment, including scientific comments, in the discussion pages on this forum thread so worth having a look.
     
  2. Adam

    Adam *****

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    If anyone can put a positive spin on this then please post now. I sense defeat ( in myself). And another 13 yrs (to life) in the wilderness.
     
  3. Koan

    Koan Be the change.

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    Thank you, Orla, for this. It is not what we expected but it is more information and what we all really want is accurate information.

    Now we wait for more information so that we may discover why there are these discrepant results. There will be reasons, we just don't know what they are yet.

    All we want, after all, is for the truth to be sought by honest, intelligent, well meaning researchers.

    We have more questions. I'm looking forward to more answers.
     
  4. Koan

    Koan Be the change.

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    Hey Adam,

    We were posting at the same time. Maybe we shouldn't spin it at all. No positive spin, no negative spin. It is what it is.

    It ain't over til it's over and it's not going to be over until it's figured out.
     
  5. Adam

    Adam *****

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    Thanks Koan. I know you ae right. I always read and appreciate your posts. My avatar does not represent my current mood.

    I got a Pedometer today off Amazon - my way of trying to appease the GET proponents. Trying to set goals. Which I've tried before. The ceiling that I can never break through.

    thanks again
     
  6. V99

    V99 *****

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    As it is two respected ME researchers, it doesn't look good. Something has gone wrong somewhere, or perhaps it is a subset with few in the UK?

    At least the WPI and these guys will continue to look.
     
  7. Kati

    Kati Patient in training

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    This is a bit worrisome, but perhaps when we see his methodologies, we may find that they differ from the Lombardi group. It's a bit sad that the study is published in Retrovirology. I still have trust in Dr Judy, and await other studies.
     
  8. Lily

    Lily *Believe*

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    Is this the reason for the sudden influx of visitors today? - most users online ever - new record! Last record was when the IC study came out. Welcome everyone! Tea and cakes are in the community lounge.:Retro smile:
     
  9. Koan

    Koan Be the change.

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    Hey Adam,

    Your Avatar doesn't represent my mood either. It's hard to smile so beautifully when you've just been kicked in the gut. I think it will take us a little time to catch our collective breath.

    Nevertheless, there remains the reality that good scientists - many without a dog in our fight - have found a solid correlation. Patients from the UK have tested positive in appropriate numbers. Why is that? Maybe we know the actual meaning of that study, maybe we don't, but it means something.

    And, to counter the terrible, breathless, gutted feeling, we must remain mindful of the fact that XMRV is not the only biological finding upon which we hang our fight to have ME/CFS taken seriously and treated appropriately. It is one piece of many which, to any rational person, make our very solid case.

    I don't know about you but I'm getting my breath back and carrying on. Not easy, I grant you, but something we can manage - together.
     
  10. George

    George Guest

    One positive part




    It seems the question of XMRV being a mouse contaminate has been answered; it isn't a contaminate but a unique gamma retrovirus. So that's good the research community has a new virus to play with!





    Interesting statement that was totally unnecessary for the study??? This sounds like a set up to add doubt to the serology tests performed by the Japanese and the upcoming DHHS.


    Again they reiterate that it is not a MLV contaminate but a unique retrovirus in the human population.

    O.k. that's my take on the abstract now for the study (science) I'll be back....
     
  11. sproggle

    sproggle Jan

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    I would be very interested in Dr Judy's response to this study.

    I assume she will have heard about it, but does anyone who is in contact with her know or sent her the link?

    I know she is very busy but that she will also be very interested in this, if she was to say she can't find anything wrong with their testing technique it is a big blow to the UK.

    If no-one here is in the know, we'll just have to await the WPIs next press release....

    Waiting is the worst!!! :eek::tongue::(

    Jan
     
  12. Funkster

    Funkster

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    Following the findings reported here, it would seem a prudent next step for subsequent studies to compare samples and protocols between different laboratories around the world.

    There have also been conflicting reports describing the association of XMRV with prostate cancer. Two studies from the USA [1, 5] have found an increased prevalence of the virus in prostate cancer patients, although they differed as to whether this was dependent on the RNASEL genotype of the patient.

    Conversely, two German studies failed to establish a link between the virus and disease [6, 7]. Nevertheless, XMRV has been detected in the control groups in multiple investigations [5, 6, 8], with the incidence varying between 1 and 6%. In our serological studies we have also identified neutralising activity against XMRV in around 4% of all the samples examined. Remarkably many (but not all) of the seropositive samples were identified in a relatively small group of blood donors within the SGUL cohort, possibly suggesting a local outbreak of infection. There is no evidence that this group are related or that they have a particularly high risk of acquiring a retroviral infection.

    Therefore, an outbreak of this kind seems unlikely. Moreover, all but one of the positive samples from the SGUL set we tested were also able to neutralise MLV pseudotyped with the envelope protein from VSV (Table 3). The one serum that failed to neutralise VSV-G pseudotyped MLV was, however, able to neutralise MLV particles pseudotyped with other retroviral envelopes. We therefore consider these positives from healthy blood donors to be non-specific cross reacting responses. The remaining four positive samples from the BLT and GC cohorts had much weaker neutralisation activities and did not neutralise VSV-G pseudotyped MLV, although, again, the positive serum from GC did neutralise particles expressing other retroviral envelopes (Table 3).

    Although we cannot rule out the possibility that the activity of these samples against XMRV is also nonspecific, one possible explanation for these serological findings remains that XMRV infection has occurred in around one percent of the population. This figure is consistent with the general prevalence in control samples previously reported. Given the common oncogenic properties of gamma-retroviruses [19] and the reported link between XMRV and prostate cancer [1, 5], such an observation might be of considerable significance, particularly for the blood transfusion services. It should, however, be noted that we have so far been unable to reliably detect bacterially expressed XMRV Gag proteins by using these sera in immunoblotting experiments. It is therefore conceivable that these neutralising activities were not elicited by XMRV. Further investigations are required to determine the nature of these antiviral activities.
     
  13. sproggle

    sproggle Jan

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    Teesside, England UK



    Hi George

    I've always been a dog lover, and you've made my day with your positive insights once again thank you!! Here have a gravy bone (I'm sure my dog Thomas won't mind -well not too much!) :hug::hug::hug:

    I was feeling disheartened but the by the time it took me to write a post you were already there with some good news. Truly mans (and womans of course!) best friend

    Jan xx
     
  14. hensue

    hensue Senior Member

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    I know Science has to prevail! But this is driving me over the edge. Little Drama there.

    I agree the WAITING is so Bad.
     
  15. busybee

    busybee Senior Member

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    :sofa: I'll just wait here, Thank you George
     
  16. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    just last night in the chat room talking about all the good news starting to come our way, and then this happens! I'm tring to keep from losing it!
     
  17. CBS

    CBS Senior Member

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    Kerr and the WPI

    J. Kerr (author of this latest study as well as two studies showing consistent DNA anomalies in CFS patients) and the WPI were awarded a join grant by the NCI.

    On 24 September, WPI announced:

    As has been said many times, with all of the studies underway, in 6-12 months the role of XMRV (or something else that is related) if present, will be known. I don't think that this is the end of looking for an answer but I do suspect, as is suggested in this latest paper, that it means there will be a shift towards looking for a reason for the differences between labs and techniques.

    That needs to happen. The differences have been too stark. Hopefully, clues about a cause will come from understanding these differences but for now, it is beginning to look more and more likely like these differences are real.

    I am very interested in what this means for the collaborative work between Kerr and the WPI that has already been funded by the NCI.
     
  18. gracenote

    gracenote All shall be well . . .

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    No pressure, George. But I'm also waiting. I've become a chronic waiter, it seems.
     
  19. Quilp

    Quilp Senior Member

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    For those of you that don't know Kerr and Gow have very much been on our side throughout. There can be no suggestion of bias. Something is seriously wrong here. Why are we getting 50% rates at VIPDx and a similar number here in the UK with Biolabs, albeit a much smaller sample size ( 20 so far I think )
    I think that the fall out from this publication will have far reaching ramifications.

    Mark
     
  20. Lily

    Lily *Believe*

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    :sofa::sofa::sofa: Waiting for George......:sofa::sofa::sofa:
     

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