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Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

Discussion in 'XMRV Research and Replication Studies' started by Jemal, May 4, 2011.

  1. eric_s

    eric_s Senior Member

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    Don't think like that Daffodil, XMRV is not over at all, and if XMRV is not it (and that's not my conclusion at this moment), there are many interesting other avenues, like the spinal fluid findings, the gene expression findings or the antiviral interventions. All of this is ready to go and just waiting to be pursued. And if we can only finally get everybody with ME/CFS to support the research, we can get to the bottom of every of those findings quickly. We have to do that. I'm working on it everyday, unfortunately it's not always easy, but we can make it and we will.
     
  2. Wonko

    Wonko Senior Member

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    seconded

    also I believe (from the SOK) that the WPI's capabilities are pretty much all taken up with either the BWG or the Lipkin study (or both) for the next few years, so attempting to demand stuff from them, apart from being insulting, is unlikely to produce any results, they just dont have the resources.
     
  3. eric_s

    eric_s Senior Member

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    They went out there with very bold statements, attacked many people, asked for our money and got it (even though not enough). If they're right, that's ok. If they're wrong, i think it was not ok. As far as i'm concerned, i'm still far from saying they were wrong, but they have been challenged again now and so they should answer. They also want more support from us and so i think they have to convince us.
     
  4. eric_s

    eric_s Senior Member

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    To post #139, 140 and 142:

    I'm repeating myself, but tell me why my thought is wrong, and i will stop:

    Ila Singh has found 0 XMRV in 200 healthy controls plus 105 cases of ME/CFS. That's 305 subjects.

    This contradicts her earlier findings in prostate cancer. It also contradicts Switzer's study published 2 days ago.

    As long as it is not proven that Dr. Singh's prostate cancer work and Switzer's study were wrong, how can you conclude this latest study is correct and the studies mentioned before were wrong and not the other way round?

    If you can't, you should not draw a conclusion so rapidly. It's dangerous.
     
  5. Ronan

    Ronan Senior Member

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    I'm sure Dr. Singh has taken her own past studies into account when coming to any conclusions in this one!
     
  6. eric_s

    eric_s Senior Member

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    But we have not heard her make a comment regarding her past studies, right? I think that would be necessary and appropriate. This is much too important to rely on such guesses, in my opinion.

    And, by the way, Switzer's study was published 2 days ago. Had they concluded that the previous studies were wrong, why would he puslish his study that says they have found XMRV and the phylogenetic analysis shows it's not contamination? To make themselves look stupid an incompetent? Doesn't make sense to me. So at least Switzer does not seem to believe there's no XMRV out there.
     
  7. omegaman

    omegaman

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    This was not a replication study. Many variables were changed from the science paper. If you read both papers you will see that many variables involving the assays were changed.

    Why would you find XMRV in prostate cancer and then change assays in this paper. Did she check against her own positives from her previous prostate paper to see if her new assays worked?

    There still has not been an actual replication study including this paper. It's really frustrating that no one will do one including these well respected researchers.
     
  8. dannybex

    dannybex Senior Member

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    Hi Daffodil,

    I'm not sure what you're referring to, when you say "they told us time and again this was positively IT", although I do believe that some at the WPI did suggest that in interviews.

    I agree with Eric and Calendonia -- there are so many other possibilities, and other therapies/protocols that are helping some people at least in some ways (and I know you've tried many things -- we all have) -- so please, hang in there and check around the rest of the forums to read some stories of improvement.

    It does seem to be kind of quiet over at the WPI. Hopefully they'll have a statement or press release soon.

    d.
     
  9. dannybex

    dannybex Senior Member

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    Also...many have been wondering what about tissue samples and other reservoirs where XMRV might be hiding. That's certainly a good question, but keep in mind that the original Science study did not look into that. Quoting the title of the study:

    "Lombardi, V. C., F. W. Ruscetti, J. Das Gupta, M. A. Pfost, K. S. Hagen, D. L. Peterson, S. K. Ruscetti, R. K. Bagni, C. Petrow-Sadowski, B. Gold, M. Dean, R. H. Silverman, and J. A. Mikovits. 2009. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 326:585-9."
     
  10. Evangelina

    Evangelina

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    Quote: (sorry I forget to hit the little box thingy)

    To post #139, 140 and 142:

    "I'm repeating myself, but tell me why my thought is wrong, and i will stop:
    Ila Singh has found 0 XMRV in 200 healthy controls plus 105 cases of ME/CFS. That's 305 subjects.
    This contradicts her earlier findings in prostate cancer. It also contradicts Switzer's study published 2 days ago.
    As long as it is not proven that Dr. Singh's prostate cancer work and Switzer's study were wrong, how can you conclude this latest study is correct and the studies mentioned before were wrong and not the other way round?
    If you can't, you should not draw a conclusion so rapidly. It's dangerous." -eric_s

    First of all - this is an interesting debate, isn't it? And while I don't know for sure what the outcome will be when the dust completely settles I want to be sure that I am not misunderstood. I am not trying to be dangerous. Although wouldn't it be amazing to be healthy enough to do something more dangerous than arm-chair olympics? (Arm-chair Olympics is actually a really fun game - let me know if anyone wants the rules. I beat my cousin 4x in a row this past Thanksgiving...lol...good times)

    Anyway - back to the subject at hand-

    I meant my response to be comforting to those who felt despair at this latest paper and to state my understanding of Dr. Singh as a person. Sometimes people who are desperate to be rescued from a hell not of their own making (like me) reach a point at which the straw breaks the camel's back. And they die. I have had friends die from having their spirits broken, have you? I hope not. It is horrible and the heartbreak comes back when I read posts from people who are suffering.

    Again, it appears from this latest paper that XMRV may not be the "it" we were waiting for. To answer your question eric_s -I honestly do not know. I would write an email to her - or have someone from PR (Like Mark or Alex or Court) email her and ask. I'm sure if we asked nicely she would tell us.

    Just to make sure I am being clear, I wrote my original response so that those who put all their eggs in the proverbial XMRV basket wouldn't crumple with the unbearability of not being cured at this moment. I do not want one more person to feel despondant or even a little bit disheartened by this disease. I am a ball of sunshine. I live to make other people happy and joyful. Call me a Pollyanna - I accept the title with gladness... (The Glad Game? Get it? Sorry, sometimes I just quote movies and tv without realizing it. Call me DiNozzo. Actually, Abby is happier one, but I digress :)

    I am certain that in the next few years amazing things will happen with regards to the treatment of and cure of this disease. The important thing is to keep moving forward with as much spring in our steps as possible. We will get this figured out and we'll be okay. I am so certain of this it is like looking into the sun and seeing how bright it is. I not only want a cure, I want the right one. Whatever that is. E.
     
  11. ukxmrv

    ukxmrv Senior Member

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    Evangelina,

    I'm glad that you wrote the second email so we can all understand one-another.

    I hear that you have strong feelings about the intent of Dr's Bateman and Singh. I've not met either of these women so I cannot make a judgement on this intent etc.

    I do feel despair at this paper but not because all my eggs are in one basket or my spirits are broken.

    My despair is because I am disappointed that they did not seem to have done an adequate or thorough job. Please hear me out as well.

    I would have expected a replication of the original WPI paper

    I would have expected that when no XMRV was found in CFS patients, then Dr Singh would have gone back to her XMRV+ prostate cancer patients and checked that her methods worked by testing these patients again. The paper should have been delayed and not published until it was determined that the methods used could find XMRV in the blood of any patient or any control.

    This is another 0/0 study and that is important. XMRV either exists in the human population or it doesn't.

    Do you understand why people would be in despair because they felt that the paper wasn't good enough?

    I also want the right cause, the right cure. Years ago I lived through the last retro-viral debacle. Did you live through that and see the lack of research after? Do you remember what happened and what it was like?

    We have no guarantee that Dr Singh and Dr Bateman will go onto deliver anything like a cure or find the cause in the future. It may simply be beyond the funding they can get or the science they use.

    Dr Bateman sounds like a great doctor. She is trying her best. With respect do you really think that she will deliver a cure in a few years and if so, why hasn't she done so before now?

    I'd like XMRV to be treated fairly in research. For each study to bring the understanding forward and not just showing us another method for not detecting it.

    There are different ways of looking at this and I think that we should be entitled to be despondent, disheartened if we feel it is appropriate. Denying people a full range of human emotions (including the powerful ones like that) doesn't work for all.
     
  12. Daffodil

    Daffodil Senior Member

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    i agree about dr. bateman. she had a sister die of this disease so she would want answers almost as much as we do.
     
  13. Evangelina

    Evangelina

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    I am a good listener, I hope. I try to be anyway.

    "I would have expected a replication of the original WPI paper" -
    Okay. This sounds like a great idea. I do not know why is was not replicated exactly. Has anyone asked Dr. Singh? Perhaps we can channel our efforts into a group email to Dr. Singh. I don't see why she wouldn't answer us if we ask nicely.

    "I would have expected that when no XMRV was found in CFS patients, then Dr Singh would have gone back to her XMRV+ prostate cancer patients and checked that her methods worked by testing these patients again. The paper should have been delayed and not published until it was determined that the methods used could find XMRV in the blood of any patient or any control." - I could be wrong, but I believe the paper was delayed. By several months... We should ask Dr. Singh this too. This is a vaild question.

    "XMRV either exists in the human population or it doesn't." Correct again. I hope I don't have a retrovirus, but if I do, well then shoot, I'll learn to cope with that too.

    "...despair because they felt that the paper wasn't good enough..." Okay. I agree. Why don't we ask Dr. Singh? I don't want to flood her email, so let's send just one well thought-out, polite letter and ask.

    "Did you live through that and see the lack of research after? Do you remember what happened and what it was like?" Yes and Yes. I also have many medical professionals in my family who had to deal with it. What a nightmare. I certainly don't want to have that happen again. However, can you see why I don't want to have a retrovirus? Wouldn't it be vastly easier if it was genetic with a twist or an infection of the whatever we can't find yet, but is easy to cure?

    "We have no guarantee that Dr Singh will go onto deliver anything like a cure or find the cause in the future. It may simply be beyond the funding they can get or the science they use."

    >>To make myself clear - I never said Dr. Singh would provide the cure. I am sorry for those of you who misunderstood me. I do however believe with certainty that there will be a cure soon. Where it will come from I do not know. I am sure there will be a cure though.<<

    "With respect do you really think that she will deliver a cure in a few years and if so, why hasn't she done so before now?"

    >>I don't know if Dr. Mikovits will do it or if some brainiac 7 year-old college student will do it. I just know it will be done. A few years ago having a baby with Pompe disease would die before the age of two. There is now what in effect would seem to be a cure. I do believe in miracles. I believe miracles will happen when people work towards a goal in concentrated effort. There is great purpose in single-mindedness.<<

    "I'd like XMRV to be treated fairly in research. For each study to bring the understanding forward and not just showing us another method for not detecting it." Okay. Maybe this test is not the same, perhaps it is a terrible test. Perhaps it is amazing. Why don't we ask her?



    "we should be entitled to be despondent, disheartened if we feel it is appropriate. Denying people a full range of human emotions (including the powerful ones like that) doesn't work for all."

    >>To be clear - I never said 'don't have emotions' that would be dumb of me! I did say that I liked to make people happy. I am sorry that this offended people. I just didn't want people committing suicide over one stupid paper. If you want to sob and scream and vent all your emotions go for it. That is normal and healthy.I was trying to be a shoulder for people to lean on or cry on that certainly backfired. I have a neighbor who does primal scream therapy. It is shocking and loud, but apparently is very effective for her. I may go try it out now.<<

    I will continue to defend my friends. I will not appologize for defending a friend. Now in order to chill and get in a good laugh at myself here is my fav. blond joke - I am blond so I am allowed to tell it -

    How do you drown a blond? Tape a mirror to the bottom of a swimming pool! Lol...
     
  14. Bob

    Bob

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    If anyone would like to read about, what I think is, a more hopeful XMRV study, then a paper has just been published by Switzer of the CDC, which seems to have slipped quietly under the radar...

    It's not an ME/CFS study - it's a 'negative' prostate cancer study... But Switzer does find XMRV in 3 prostate cancer patients... And they are entirely new strains of XMRV... It seems like a very significant study to me, especially because it was carried out by the CDC and because Switzer has ruled out both mouse contamination and cell line contamination... He confirms that these are human viruses...

    The positive news is in the detail of the study, and in the discussion, not in the title of the paper.

    Here's the relevant forum thread:
    http://phoenixrising.me/forums/showthread.php?11415-Switzer-now-finds-(some)-XMRV-in-Prostate-Cancer
     
  15. Ember

    Ember Senior Member

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    Thanks, Evangelina. I think the examples you gave make clear the kind of despair that concerns you. Don't assume that your words weren't helpful to some. Your earlier post made me cry (because the events you've witnessed touched close to home). This one made me laugh.

    The public debate has begun. Here are a couple of quotes from "More Bad News for Chronic Fatigue Syndrome and the Mouse Virus Thesis" by Jon Cohen on 6 May 2011, 5:41 PM:

    Mikovits notes that Singh's group did not use the identical protocols for every analysis, and stresses that discrepancies between their labs may also reflect her own finding that XMRV levels vary in patients day to day. Singh counters that although some protocol differences exist, they worked closely with Mikovits' team to replicate the original work. Singh says the fact that they didn't find XMRV in any of these patients is significant. "She [Mikovits] pointed us toward patients that she had repeatedly tested positive," says Singh. "We should have found at least one that was positive. Not all of them would have gone negative on the day when a phlebotomist met with them."
    ...

    The XMRV saga is far from over. Unlike Coffin and many other skeptics, Singh contends that a virus similar to XMRV does infect humans, and her own work supports the prostate cancer connection. "There is still considerable data supporting the link to prostate cancer that cannot be easily explained by contamination," she says. "More work needs to be done before that question can be settled."

    The debate about whether XMRV infects humans and is linked to disease promises to come to a head later this year, when two different studies sponsored by the U.S. National Institutes of Health are completed. The studies both involve Mikovits and several other independent labs testing the same samples. Mikovits says if all the samples in these studies test negative, including in her own lab, the day could come when she changes her mind. "But I don't expect to get to that day," she says.
     
  16. Lisette

    Lisette My daughter and I

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    >> I hope I don't have a retrovirus, but if I do, well then shoot, I'll learn to cope with that too.

    I think you stated yourself well, Evangelina. I, too, would not like to have XMRV or any of its mousey-mafioso family members, for the sake of my own family.

    >>I believe miracles will happen when people work towards a goal in concentrated effort. There is great purpose in single-mindedness.<<

    I agree completely. My FIL survived acute leukemia in the early nineties because of an improvement in the chemo. Only a few years before that, there was no hope. The miracle was that people kept working on something that was known, but considered hopeless. If there are researchers/doctors who are not willing to give up on us, then let's not give up on them.

    >> I have a neighbor who does primal scream therapy. It is shocking and loud, but apparently is very effective for her. I may go try it out now.<<

    I think I will try a primal scream, too. Perhaps it will temporarily alarm the yappy dog next door into a stunned silence.
    **********
    Here are a few questions for the scientific people. Sorry to put this all on one post, but it's all I can manage for now.

    When it comes to finding a virus in tissue samples, are we facing the same difficulties as we are with blood samples? Is there ever a contamination/reagent issue involved?

    Are viruses ever found in the spinal fluid-- I was confused by the one researcher at the SOK who said that they failed to find XMRV "and other common viruses" in spinal fluid. Why couldn't they find these common viruses? Does that imply something about spinal fluid or about the test they used?

    Are viruses ever found in lymph fluid or lymphatic vessel tissues?

    These aren't important questions for the state of our knowledge, just ones that I was personally curious about. Only answer if you have nothing better to do. :)

    Thanks,
    L
     
  17. shannah

    shannah Senior Member

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    Interesting note from Ian Lipkin posted today on VR's blog:

    "Dear Vince-

    We have a plethora of explanations for how CFS/XMRV/MLV studies could go awry. However, we dont have evidence that they have. Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion.

    I remain agnostic. We wont have answers until the end of 2011.

    The NIH will post something on our study today.

    Ian"

    http://www.virology.ws/2011/05/06/i...m_campaign=Feed: VirologyBlog (virology blog)
     
  18. eric_s

    eric_s Senior Member

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    Sounds good. But on the other hand, we have of course heard many good sounding things before, from many sides. So maybe better wait until we can judge from the actions. Thanks for posting, though, it's interesting to hear him comment on this.
     
  19. serg1942

    serg1942 Senior Member

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    Hi guys!

    Thanks Alex for your fantastic post. I have found it very useful, and of course, I do agree with you in two main facts/ideas: 1- The need of testing for MLVs in tissues (I have to recall that I am XMRV positive by stomach biopsy by PCR as well as positive by culture), and 2- that a Reverse Transcriptase testing would be a very useful test. I wonder though whether this enzyme differs from one retrovirus to another, or rather, theres some generic marker to measure them Do you know this?

    I am thinking about my stomach sample It was taken in Spain, in a sterile room not used for lab work, i.e, where they dont work with mouse They did not touch the samples directlythey put the samples into one sterile plastic vial and I sent it off to Redlabs in Brussels, where they performed a PCR (not sure which one). How easily could my samples have been contaminated in Redlabs, taking into account that they only performed the PCR? Alex, any insight here?

    Hi Liquid Sky, youre welcome. Yes, you got it right! :) As far as GcMAF, I know of 4 sources, 3 of them in Europe, and the one used in the HIV and cancer studies in Israel (prohibitive price for most). For more details, please ask in the GcMAF thread, because I dont know from memory the details, and I am sure many fellows there do:

    http://forums.phoenixrising.me/show...macrophage-activating-factor-anyone-taking-it

    Thanks for your good wishes!

    I do think the same as Caledonia. When I/we root for XMRV, it is because it makes sense in the whole picture, that I think, has already been drawn by Rich Konynenburg (GD-MCB theory). But we have to think that to know the cause is not the same as to know the solution. If it has to be a virus, in order to fit even better with the GD-MCB theory, it had to be integrated into the human genome, as methylation is needed to silence proviruses.

    BTW, someone has raised the question of what is happening with the patent of the machine that is in theory able to find the XMRV DNA inserted into our DNA This would prove beyond any doubt the XMRV as a real human retrovirus, and this technique could easily be used to study CFS

    And, again, what about the XMRV footprint that Dr. Mikovit said they had found, as an specific abnormal pattern of cytokines? If this is true, and this is published, then I imagine that they must have found a clear correlation between XMRV+ patients and the aforesaid footprint. If this is true, I dont see a way contamination could fit in to these results Were they lying?? I really doubt it.

    Eric, I think the same. If we believe the previous studies, just by chance, Singh should have found at least a few positives Im really missing something here too

    Eager to read some official statement from the experts!
    Saluditos,
    Sergio
     
  20. Bob

    Bob

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    That's a very helpful statement...

    In my humble opinion, I agree that we should not make any conclusions about XMRV until the end of 2011, after the Lipkin study has been completed.
     

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