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Q and A with DR. ILA SINGH about her XMRV ME/CFS study, at CFS Central

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, May 6, 2011.

  1. Mindy Kitei

    Mindy Kitei

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    She believes XMRV isn't in ME/CFS patients but that there's evidence for the retrovirus in prostate cancer.

    Mindy Kitei
    CFS Central
    http://www.cfscentral.com
     
  2. Sasha

    Sasha Fine, thank you

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    Thanks for covering the story, Mindy. I just left a comment.

    There's some stuff in the comments section attacking Dr Singh. Dr Singh may well look at those comments. We need good scientists like her. I hope lots of people will leave a message supporting her. We can't afford to let a vocal minority who see every negative XMRV study as evidence that the scientist who did it is being manipulated by money or politics, drive good scientists like Dr Singh away.
     
  3. Jemal

    Jemal Senior Member

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    Yeah, many thanks Mindy! I really appreciate what you have been doing.
     
  4. Waverunner

    Waverunner Senior Member

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    I completely agree.
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    so why wouldnt xmrv be a contaminant in prostate cancer then??? Im confused and everything does sound right??????????
     
  6. alex3619

    alex3619 Senior Member

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    Hi heapsreal, my theory is that this is because much of the evidence Singh is using for prostate cancer is based up immunohistochemistry staining of the virus - not PCR. However, this just swaps contamination risk with cross-reactivity risk. There are always risks until it is sequenced. Bye, Alex
     
  7. insearchof

    insearchof Senior Member

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    The answer according to Singh, is quite obvious. Prostate cancer and Chronic Fatigue Syndrome are two different illnesses.

    It's elementary Watson.....as is perhaps her simple attempt to salvage her prostate studies.:)

    But of course, she did use different methods and assays for her CFS study ( on the basis of her own admission)....though you wonder why there was need to reinvent the wheel when it was successfully employed elsewhere.

    She unimpressively tries to explain the 0 result in controls in contrast to 4%
    findings in prostate studies.....as her not being sure how to explain that....other than different samples -tissue v blood and different methods being used .....yet despite such uncertainty, she is adamant that her study shows that XMRV in CFS must be contamination and that patients need to stop their ARVs.

    I love her flawed scientific view, that if you can't find XMRV in the blood, then there is no reason to look for it in the tissues. Maybe she never read the Monkey study that showed XMRV does not always show up in the blood....but will still be found in the tissues.

    I look foward to the XMRV serology findings on prostate cancer cohorts.

    for these reasons I do not think she is as impartial as others are suggesting. If she was, more reasonable or qualified comments would be expected.

    Very disappointing for a lot of people, I am sure.
     
  8. eric_s

    eric_s Senior Member

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    Hey, i'm sure there's a country somewhere where she and Myra McClure and Coffin and Stoye can get married :tongue:

    That was what Myra McClure said last fall. That XMRV in prostate cancer would work out, but not in ME/CFS. Unfortunately, with the studies that exist, you can't possibly draw that conclusion without being illogical.

    So once again: Until the data allows for that conclusion: Don't let it happen, unless you want to be abandoned.
     
  9. insearchof

    insearchof Senior Member

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    Hi Eric

    I don't see the Fat Lady approaching the wings yet.

    I would have liked to know though, whether the methodology employed in this study was covered by Singh et al patent.

    Patented processes require a degree of novelty. Therefore if used in this study, clearly such cannot be regarded as a replication of Lombardi et al work....no matter how comprehensive.
     
  10. eric_s

    eric_s Senior Member

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    Ok, so please prove you can find it in the blood of the XMRV positive healthy controls from your prostate cancer study. And even that would not prove you were able to find it in ME/CFS as our bodies might deal with the infection differently. But it would be a first good step.
     
  11. Esther12

    Esther12 Senior Member

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    She's saying that the only reason we think there's a link between XMRV and CFS is because it was reported that XMRV could be found in the blood of CFS patients. If that's not the case, then there's no particular reason to believe it's likely to be in the tissue of patients. Unless you think XMRV is being found in the blood of CFS patients, there would be no particular reason to go hunting through the tissue of CFS patients for XMRV.
     
  12. eric_s

    eric_s Senior Member

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    Yes, that was reported. And her study is not able to invalidate this report, due to the problem i've mentioned many times now. So the positive studies can't be seen as proven wrong and there is reason to go and look.
     
  13. Esther12

    Esther12 Senior Member

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    I think it makes more sense to test the WPI in the way the BWG and Lipkin studies are doing. It hasn't been proven that the Science paper was wrong, but there's growing evidence that this is the case. Blinded testing of the WPI should have been done ages back imo.
     
  14. insearchof

    insearchof Senior Member

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    Hi Esther

    I agree with your analysis of her comment. The focus on the positive studies - published to date - have been serology based. No one expected her to depart from that focus.

    I dont agree however with her reasoning or logic as to why we should not go looking for it in the tissues.

    Her reasoning ( no reason to persue tissue studies) is based on the assumption - that her own study (and other negative studies) is water tight and puts the matter to bed. Yet this is not the case. In respect of her own study on CFS, when questioned about strange seemingly irreconcilable results with her previous findings in XMRV, she cannot provide an adequate explanation. In fact, she states she remains uncertain.

    Her reasoning is - I could not find it in blood and others have not been able to - so therefore there is no evidence of it in the body and therefore no reason to explore the matter further.

    The monkey study aside, it is well known - that virema diminishes quickly after infectious onset and can go to the tissues.

    Virologists understand and fully acknowledge the limitations of serology based testing and for this reason, they will test and re test patients over the course of their illness. Enteroviruses, EBV and other HHVs are a few that I know of, which have this problem. When it comes to viruses there are often limitations associated with detecting virema in the blood.

    Why isnt this being acknowledged?

    Scientists know this - and in acknowledging that symptoms are consistent with the virus they are hunting for - they start to look for evidence of it elsewhere - in the tissuse.

    Take the work of John Chia (and some others) with enteroviruses.

    For years it was thought that it was not possible to have a prolonged enteroviral infection that could be contributing to symptoms commonly see in ME. The rationale was, that there was no evidence of its presence in serology after a period of time (therefore no evidence that it existed in the body) and that gastric secretions in the stomach would render it impossible for it to survive there (which is where it thrives).

    Chia showed recently that this was false and highlighted once again, the limitations associated with virema in blood. He found it in the stomach tissues and repeatedly with patients over a number of years.

    But John Chia knew about the nature of viruses and the limitations of serology - because he was an infectious diseases specialist.

    Had Chia (and others) accepted the premise now being suggested by Singh - this would never have come to light and science would not progress to learning more in the hopes of finding a cure.

    If Singh was sincere, she should have said her study did not find it in the blood but that did not mean that it might not be elsewhere - especially given the monkey study, that she had found XMRV in tissue (albeit in another patient group) and given general science regarding limitations of serology in detecting viruses well after infectious onset.

    This is why I am troubled by Singh.

    If others were to accept Singhs limited and blinkered approach to science on this point, it would not progress very far.
     
  15. eric_s

    eric_s Senior Member

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    I agree with that (Esther's post, i didn't see you posted in the meantime, Insearchof). But given all the errors we have seen up to now, even if those are very capable people, i don't feel very comfortable about that.

    If there is a political vote, representatives of all the parties are there when the votes are cast, the ballot box is sealed, opened and the votes are counted.

    I would really like this process to happen in a similarily controlled way.

    Getting a bad president due to a flawed voting process seems less bad than being left with this disease.
     
  16. insearchof

    insearchof Senior Member

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    Capable and competent, extensive/thorough and expensive - does not always = correct.
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    ISO, I totally agree. Dr. Chia's work is an excellent example of this.

    Esther, as ISO and Eric said, the problem doesn't lie in the study itself (my layperson's take is that this was a very good study) but in her interpretation of the results in an overreaching way and plastering this unwarranted view as a fact in the title of her press release. The press release title is the take home message for 99.5% of those who read it in the news, so the net effect of her study and her interpretation of it will probably be to distort and retard the science, not advance it.

    Then she is questioned by patients with these concerns and just says I don't know. Well then, if your science doesn't prove that XMRV is unassociated with ME don't say it in a press release.

    I would much prefer if she could answer the questions with an explanation pointing out something we somehow missed. But she has basically said that she can't back it up. If that's the case, I don't want someone like that working on ME science. I'm still hoping she explains these apparent discrepancies and how she arrived at her conclusion. But this may just be another of those 'I can't believe the science was so distorted' moments that are so common in ME science.
     
  18. liquid sky

    liquid sky Senior Member

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    According to her own logic, they should never have looked for XMRV in tissue from prostate cancer because they had not found it in the blood first. This particular answer troubles me the most. Why would it be wrong to look at tissues in PwME for infection? It is already being done and proving her incorrect.

    The rush to move on and certainly not start any clinical trials with medications that just might prove all these 0/0 studies wrong is rather interesting also. Her answers should be much more convincing. She is way too intelligent to provide such simplistic and unsatisfying answers. We need good, scientific answers from her.
     
  19. Daffodil

    Daffodil Senior Member

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    has dr. singh applied for patents for xmrv as it relates to cfs or just prostate and other cancers? have others applied for xmrv-related patents? does anyone know?
     
  20. insearchof

    insearchof Senior Member

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    justinreily - exactly!

    liquid sky - agree with your logic and observations on Singhs intelligence. Her comments are not justifiable.

    Daffodil ....my reading of the University of Utah Patent last year, left me with the distinct impression that the Uni of Utah was interested in XMRV but as it related to cancer. Four fifths of that document focus on processes related to such....with a small mention made before the end of the document, to the processes relevant to CFS. This is hardly surprising given the cancer research center at this university. It made me wonder at the time, why they were even bothering with CFS.

    As for other patents.....it puzzled me greatly at the time to only find this one. Where was the WPI patent? I wondered. I know these things take time....there can be hic ups in the granting of the applications etc.

    People ask....why...are there no replication studies. The cynic in me would say: no glory to be had there and no commercial patent rights should they find it with their novel approach.

    To answer your other question: http://www.wipo.int/pctdb/cgi/guest/search5

    Hope that helps.
     

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