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Live chat about xmrv tomorrow

Discussion in 'General ME/CFS News' started by free at last, Sep 21, 2011.

  1. free at last

    free at last Senior Member

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  2. alisonnic

    alisonnic

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    I've been watching this chat. Jay Levy and Michael Busch are responding to questions about the Blood Working Group's study, which they believe proves that XMRV cannot infect humans, and that the WPI study and the Alter/Lo study were flawed due to contamination. They claim that Judy Mikovits agrees with their findings, although she argues that there are other possible explanations for the fact that the new study showed that WPI could not reliably detect XMRV in people with ME/CFS.
     
  3. alisonnic

    alisonnic

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  4. Esther12

    Esther12 Senior Member

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    They didn't post my question = chat sucked.

    Not sure why Jay Levy seems so confident about chronic immune activation. Ah well, back to the drawing board.
     
  5. alisonnic

    alisonnic

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    I agree. In the chat, Jay Levy sounded like he's concluded that because this XMRV study failed to confirm the WPI and Alter/Lo studies, there can't possibly be any pathogens, viral or otherwise, which are persistent and causing the illness. Pretty big leap, it seems to me. And from that he's concluded that the problem is that immune activation from a long-departed pathogen is responsible for all our symptoms. Another pretty big leap, IMHO.

    I've been sick for seventeen years. The disease - and related chemical sensitivities - took my career, my home, my friends, everything I owned, everything I'd worked for all my life. I flew competition aerobatics and raced cars (in cars and airplane I'd built myself). All that's gone, and now I live in a tiny two room apartment and spend almost all of my time in bed. I can't even do my own grocery shopping any more.

    Given this context, and the hope stirred by the WPI XMRV study, it's very hard to read about this latest study and not feel despair.
     
    shannah likes this.
  6. alisonnic

    alisonnic

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    They did respond to my question. I asked how they could explain the study showing the progression of XRMV in rhesus macaque monkeys, given that they believe they've proven that XMRV cannot live in human blood or tissue. They said that the rhesus monkey study was flawed due to contamination too.
     
  7. alisonnic

    alisonnic

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    Does anyone know if it's allowed to post the content of this chat here? I've saved the entire chat and could post it here, but I don't want to do so if this would be violating any copyrights or other IP constraints.
     
  8. Esther12

    Esther12 Senior Member

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    Welcome to the forum alisonic. I'm sure you could post the content of the chat here (although you might have to do it over a couple of posts, as there's a character limit per post).

    Levy mentioned that allergic responses would be significant in his immune activation model, so that could explain some of your sensitivities?

    Maybe for some of us. I'd be surprised if there was any one cause.
     
  9. Bob

    Bob

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    Hi alison,

    I think there are reasons not to despair from hearing the news about the BWG...
    The research goes on, and XMRV has opened up so many research opportunities for us...
    Here are some posts with reasons not to feel despair, from another thread, in case helpful...

    http://phoenixrising.me/forums/show...-WORKING-GROUP&p=206583&viewfull=1#post206583
    http://phoenixrising.me/forums/show...-WORKING-GROUP&p=206707&viewfull=1#post206707
    http://phoenixrising.me/forums/show...-WORKING-GROUP&p=206714&viewfull=1#post206714

     
  10. ixchelkali

    ixchelkali Senior Member

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    Alisonnic, that was a good question. Congrats on getting an answer.

    They didn't take any of my 4 questions, maybe because I was asking Jay Levy about his chronic immune activation theory. He sounded like he KNOWS that's the answer, but I don't think he's looked into it in any detail.

    All-in-all, the Science chat was pretty much a waste of time. If they had announced the publication of the BWG results ahead of time, maybe people could have prepared questions about that. One question that was asked was why they had such a small sample size (15 XMRV-positive people). They said they wanted a larger sample, but they could only get 15 people to return. Really??? That strains credibility.
     
  11. shannah

    shannah Senior Member

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    There was a facebook icon at the bottom left of each question and answer on the chat site. I posted a few responses to my FB page from there. I'm sure if there were constraints, they wouldn't have included that automatic FB posting feature.
     
  12. shannah

    shannah Senior Member

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    According to Jay Levy, CFS is chronic immune activation from a cleared pathogen. He reiterated this several times in different ways. Personally, I think his theory is incomplete but regardless, it's always nice to know where each of the researchers stand.



    4:04


    Jay Levy:
    Mohammed,

    As I've mentioned in other notes, future research should be aimed at looking at ways of quieting down a chronic activated immune system. There is a natural balance after infection in which some white cells are activated to attack the infecting agent. Later other immune cells are present to quiet down the immune system. Studies of this interplay and balance need to be encouraged
     
  13. gracenote

    gracenote All shall be well . . .

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  14. alisonnic

    alisonnic

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    Here is the complete chat:

    Chronic Fatigue Syndrome: Science and Controversy

    Thursday September 22, 2011
    3:02


    Martin Enserink:
    Hello everybody and welcome to this chat, where we will talk about chronic fatigue syndrome, or CFS. There are new data to discuss: Today, Science published the long-awaited study by the Blood XMRV Scientific Research Working Group. This collaboration of nine labs set out to find if XMRV, or a broader group of viruses called Murine Leukemia Viruses (MLV's), can be reliably detected in CFS patients and healthy people. They also wanted to know whether XMRV or MLV's pose a danger to the blood supply. Their paper is here: http://www.sciencemag.org/content/early/2011/09/21/science.1213841.abstract
    3:03


    Martin Enserink:
    Today, Science also runs a partial retraction of the 2009 paper, (often called Lombardi et al.) that first reported the link between XMRV and CFS. Two of the authors on that paper, Robert Silverman and Jaydip Das Gupta, have concluded that their contribution was caused by contamination, and is wrong. http://www.sciencemag.org/content/early/2011/09/21/science.1212182.abstract

    With us today is Michael Busch, the director of the Blood Systems Research Institute in San Francisco, who coordinated the study by the Blood Working Group. (He is the last author on today's paper.) Also present is Jay Levy, an HIV/AIDS researcher at the University of California, San Francisco; he was not involved in the current study, but he published a paper in the 1 July issue of Science that failed to find XMRV in CFS patients. http://www.sciencemag.org/content/333/6038/94

    Welcome to both of you.
    3:03


    Dr. Michael Busch:
    The study involved collection of specimens from 15 patients who were previously reported as positive for XMRV or related viruses in the Lombardi et al and Lo et al studies and 15 control donors who had been previosuly confirmed as negative by the key labs. Multiple panels comprised of coded replicate samples these 30 patients/controls as well as positive controls were distributed to 9 labs. These labs performed multiple assays including PCR, culture and antibody assays. Only 2 labs reproted positive results, the WPI lab and the lab of their collaborator Frank Ruscetti at NIH. The results in these labs were inconsistent within and between the labs and hence judgeed to represent false positive results. This led the group to conclude that none of the tests could reliable detect these viruses.
    3:03


    Martin Enserink:
    Before we start, I'll also mention that my colleague Jon Cohen and I wrote an 8-page news feature about the entire XMRV saga, which Science is also publishing today. It may be a useful way to get up to speed on this confusing story. You can find it here: http://www.sciencemag.org/content/333/6050/1694.summary

    Now, first off, Michael, can you explain very briefly and in simple terms why the Blood Working Group study was set up and what it has shown?
    3:04


    Dr. Michael Busch:
    See my response above
    3:05


    Martin Enserink:
    Okay thanks - does that mean the link between CFS and XMRV is now offcially
    dead?
    3:06


    Dr. Michael Busch:
    Although our findings failed to corroborate the previous publications and strongly suggest that the previous results may have been false positive results, there is another larger study funded by NIH in progress that is examining the relationship between XMRV and CFS. Those results are expected in early 2012.
    3:07


    Martin Enserink:
    Right. Let's start with our readers' questions; we have tons of them.
    3:08


    Martin Enserink:
    Keith asked: How can a disease such as CFS or really ME occur in outbreaks and within families so often? I would think some infectious agent must be involved HGRV or Not. My whole family has ME and we got it suddenly after an infection all at once. I am adopeted and my parents obviously are not genetically related. So how can science explain these apperrent infectious outbreaks of ME? 26 years latter my Mom , Sister, Brother and I are still very ill with what feels like an infection. What are scientists doing to help figure this apperrant contagiousness of CFS and ME out?
    3:09


    Jay Levy:
    Keith

    It is very possible that and that you and the family got exposed to an infectious agent like the cold virus and had an immune response against that virus. In most people such exposure to an infectious agent leads to an activation or stimulation of the immune system. This leads to all of the symptoms one gets with CFS and related to conditions since the symptoms come from the outpouring of products from the immune system. In most people the immune system is later quieted down by other cells of the immune system and the symptoms will go away. It is our impression that in people with CFS the stimulation of the immune system is not dampened or suppressed by the response of other immune cells to bring immune system back into balance. Thus CFS reflects a chronic immune activation condition.
    3:11


    Comment From mary
    question.. Does this debate ever end? One science group publishes contamination...another opens clinics for testing and treatment for xmrv + people..do the groups ever reconcile?
    3:13

    Dr. Michael Busch:
    This is why it was important for our current study that we included the scientists at WPI, NCI and FDA who previously reported positive findings, along with 6 other very experienced labs. The findings strongly suggest that the tests that were previously reported as positive are false positives. Our hope is that this study plus the pending study led by Likpn will resolve the issue for good.
    3:14


    Comment From Bob
    Why has no one, including Dr. Levy, attempted to do an exact replication of Lombardi et al?
    3:14

    Jay Levy:
    Bob,

    In our studies we did repeat the experiments described by Lombardi et al. The approaches to detect nucleic acids in CFS blood samples followed both the techniques of Lombardi as well as those of Alter. The virus isolation was conducted under very similar conditions and actually by a very sensitive method my laboratory developed when we discovered these mouse viruses 40 years ago. The serology was done by the Abbot lab which has a very sensitive procedure for looking at antibodies. You will note in the paper in Science today that that technique by Lombardi using flow cytometry is the only one that has given a positive result which can be explained by the lack of specificity of this approach to detect antiviral antibodies.
    3:15


    Comment From Peter
    If it's not XMRV which is behind CFS, will you look for other retroviruses? And more importantly, will you try to take blood from CFS patients, inject it into animals (such as monkeys) and see if they get CFS? That would give strong indications as to wheather it (CFS) is blood bourne or not.
    3:18

    Jay Levy:
    Peter,

    You're absolutely correct that more work must be done in looking for the cause of CFS. Those studies would involve animal experiments if needed and certainly cell culture and antibody studies. The fact that XMRV is not the cause should certainly stimulate scientists to look further into a condition that I believe results from exposure to many different viruses but in which the person with CFS does not have the correct countering response of the immune system to quiet down after the initial state of stimulation against the agent has occurred.
    3:18


    Comment From Phil
    Can't they just send blinded and mixed bloodsamples (of CFS patients and healthy people) to the WPI and see if they are able to make the distinction? Seems the easiest way to know wether XMRV is related to CFS or not.
    3:18

    Dr. Michael Busch:
    Our study published today did involve sending blinded panels of different blood sample types (plasma, PBMC, whole blood) derived from CFS patients previously reported as XMTV/P-MLV infected to the WPI laboratory. The results inidcated their assays were inconsistent and, based on ther overall study, were false positive results.
    3:19

    Martin Enserink:
    In other words, Phil, the Blood Working Group did what you suggested.
    3:20


    Comment From Milo Paradiso
    Could it be possible that XMRV tested in known positive was not present at moment of second testing?
    3:21

    Dr. Michael Busch:
    As we noted in the paper it is possible that the specimens from previously positive patients we studied, which were collected 1-3 years after the previous tests had been performed, could have been negative for the virus if the infection waned or was cleared. However the absence of antibodies and virus in all of these patients, who have been previously positive on multiple time points by all assays, is inconsistent with fluctuating viremia. Antibodies do not disappear in this time frame.
    3:22


    Comment From Joe
    Is it possible that XMRV is more likely to be found in organ tissue than in the circulating blood, or that the current tests are just not accurate enough to find it?
    3:22

    Jay Levy:
    Joe,

    The techniques for detecting an XMRV infection would certainly pick up the virus in organs since this virus is reported to infect B cells which circulate through the body. Importantly as our group showed in a previous Science paper in June, human blood has a natural mechanism for destroying XMRV so it would not have the capability of even infecting a human.
    3:23


    Comment From Sandra
    So you, Jay Levy, say there is no virus in CFS/ME patints anymore, only a viral response? How can you be sure there is no virus anymore in any tissue?
    3:24

    Jay Levy:
    Sandra,

    It is very good that you understood my response. Yes I think the agent causing the symptoms of ME and CFS has gone but the immune system remains stimulated against it. What needs to be done is to find a way of quieting down the immune system as is done by most people who are infected by such an agent and do not have a chronic immune activated condition.
    3:25


    Comment From Inger
    I am positive for HGRV with a serology test, but you are telling me I can now safely donate blood again? And are you also saying that I dont have to worry about sexually transmitting ME?
    3:26

    Dr. Michael Busch:
    Hello Inger,
    If you have CFS/ME you should not donate blood, both for your own health and since it is still possible that there is an infectious cause of yoru disease. There is a lot of current research, stimulated over the past 2 years, searching for additional viruses in samples from CFS/ME patients. These studies invoved very sensitive "deep seqiencing" and "metagenomics" techniques. Until the results of these studies are available I expect there will be continued deferral of patients from blood donations. The risk of sexual transmission is unknow.
    3:27


    Comment From Emily
    Hi - I have been diagnosed with Fibromyalgia, but was originally diagnosed with CFS. I am a biomedical researcher, myself. I am wondering, aside from possible sample contamination on the part of the lab(s) that found XMRV, what could other conclusions be from these discrepancies? Is it possible that there are subsets of patients that are positive for XMRV that manifest CFS symptoms, while others may develop CFS from other viral triggers? Also, is it known what XMRV does in humans and how it would cause a CFS-like syndrome? Thank you!
    3:27

    Jay Levy:
    Emily,

    It is possible that people with CFS are infected by different viruses but their immune system, activated against that virus, does not quiet down. However there is no evidence nor any possibility that XMRV could infect humans. As is shown in our Science paper in June, human blood inactivates XMRV very effectively so an infection by that virus would not be possible.
    3:28


    Comment From Lizzy
    If CFS is indeed a chronic immune activation condition, as Jay Levy says, what kinds of treatments might be worth trying?
    3:30

    Jay Levy:
    Lizzy,

    You are correct that it would be very good if we could find a treatment against a chronic immune activated state. However it would have to be very selective because we would not want to completely suppress the immune system. My hope is that the needed further research in CFS/ME will lead to the development of a therapy that can respond to this chronic immune activation and cure this condition.
    3:30


    Comment From Tamara
    If the positive results initially found by WPI were the result of contamination, how does one explain the negative results for samples provided by healthy controls?
    3:32

    Dr. Michael Busch:
    The WPI lab reported similar rates of positive results on the coded samples from previously "positive" CFS patients and previously "negative" healthy controls. Also the results of indetical replicate samples snet to that lab were inconsistent. These results indicate that their assays cannot reliable identify samples from CFS patients as positive, including those from patients theyt previously tested as positive. The false postie results could be due to either assay non-specificity or contamination. This is eratic so detected in a similar oportion of samples from both cases and controls.
    3:33


    Comment From rivka
    Why are some people doing better on anti-retrovirals?
    3:33

    Jay Levy:
    Rivka,

    There is some evidence that antiretroviral drugs quiet the immune system. So some relief could be expected since many people with CFS show evidence of a chronically stimulated immune system. However these antiretroviral drugs are not free of toxic effects and so one would not recommend them for CFS. We need to find other drugs that can quiet the immune system in a selective and beneficial way
    3:33


    Comment From Diane
    Regarding the blood working group study - why only 15 patients? With such a small group, and given the fact that XMRV is very hard to detect in blood, wouldn't there be the possibility of a large margin of error? Especially if XMRV levels vary in patients from week to week depending on their state of health - we all know that exercise, for example, can exacerbate symptoms and affect the immune system. In the Rhesus macacque studies, for example, XMRV left the bloodstream quickly and settled into organs. Any thoughts on perhaps studying tissues in the future?
    3:36

    Dr. Michael Busch:
    The clinical collabrorators were asked to recruit as many previously positive patients as possible, but were only succesfull at recalling the 15 patients. But these patients were highly selected based on the revious results by the WPI and Lo/Alter groups, so "enriched" for probable positive subjects. Yet none of these had positive results based on the current study. In terms of the virus going latent into organs, we cannot rule that out, but it would be very surprising that antibody tests are negative. Plus the original positive findings were based on blood sample results.
    3:36


    Comment From Raj
    For how long has CFS been described in the medical literature? Is it something that physicians have seen for centuries or has it cropped up in more recent times?
    3:36

    Jay Levy:
    Raj,

    This disease syndrome has been around for at least 100 years. It was called neurasthenia at the turn of the last century and has returned a different periods of time over the years.
    3:37


    Comment From Robin
    So, it seems that XMRV as a theory is dead. What about the results of the Alter/Lo FDA-NIH study that found related virus in both fresh and stored patient blood. Was that a contamination too?
    3:39

    Dr. Michael Busch:
    We did include 5 patients who had been positive in the Lo/Alter study in our current study, and Lo's lab found them to all be negative, as did most of the other labs. Hence the results of the Lo/Alter study could nbot be confirmed. It is unclear if the original results were due to contmanation by mouse DNA but that is certainly a resonable explanation.
    3:39


    Comment From Tamara
    I am concerned that with this latest study's results, the general public opinion of CFS/ME will regress to "all in your head." In your opinion, is there any danger of this happening in the scientific community, as well?
    3:41

    Jay Levy:
    Tamara,

    That should not happen since in many cases one can find evidence of a chronic immune activated state. That means that CFS patients have been exposed to some agent but their immune system has not quieted down. Attention should be given to identifying the defect in the immune system that's not bringing it back to balance after the infectious agent has been eliminated.
    3:42

    Martin Enserink:
    Mike: Judy Mikovits, who first reported the link between CFS and these viruses is a co-author on the Blood Working Group paper. Yet in the story that Jon and I wrote, she says she still stands behind her original findings, and wants to continue her work on MLV's . What's your reaction?
    3:45

    Martin Enserink:
    (Actually, I should have said: she wants to continue working on gamma retroviruses.)
    3:45

    Dr. Michael Busch:
    I respect Judy, who I have met numerous times, for participating in the design and conduct of the SRWG studies including the blinded panel study just reported. She agreed with the findings and conclusions, but has argued that there are other interpretations, such as clearance of the virus or latency in tissues. This does not explain the results from her lab showing similar or higher rates of positive results in pedigreed controls vs previously positive patients replicate samples. Judy shoudl certainly continue her work on CFS/ME as well as gamma retroviruses.


    3:45


    Comment From Jim
    Is it possible that CFS arises from a viral infection that generalizes to the host tissue (ie cross reactivity) and then becomes a low level autoimmune condition. If so could it be detected by any tests showing an overactive immune system, or an unusual reaction such as a pure delayed hypersensitivity?
    3:45

    Jay Levy:
    Jim

    You are correct that CFS does resemble an autoimmune condition. In the past our laboratory has shown evidence of an overactive immune system by measuring markers on white cells in the blood that are associated with a stimulated immune system. These type approaches could be helpful in seeing if the blood will indicate evidence of chronic immune activation.
    3:47


    Comment From jemal
    Will there be a Phase 4 in the Blood Working Group study? Or is the group going to be disbanded now?
    3:48

    Dr. Michael Busch:
    The BWG decided not to pursue the previously planned phase IV study for 2 reasons. First the results of the phase III study incated a lack of reliable assays for detection of XMRV and related viruses in clinical samples. Second the American Red Cross has completed a much larger study than the planed phase IV study involved >10,000 blood donors as well as linked donation and hghly transfused recipient samples. That study, which was negative, has been submitted for publication.
    3:48


    Comment From Milo Paradiso
    Can you make a parallel between the early days of HIV and the early days of XMRV (for those who were old enough to live through it)?
    3:53

    Dr. Michael Busch:
    There have been two studies that injected high concentrations of XMRV into rhesus monkeys, which led to dissemiated infection and seroconversion. This finding establishes that this new virus, created indvertently in a research lab by recombination of endogenous mouse viruses to yield a virus that could grow in human and monkey cells, may be able to infect humans. However the extensive studies over the past few years have faile to confirm widespread or in fact any human infecitons. We are lucky!
    3:53

    Jay Levy:
    Milo,

    In the early days of AIDS, again much effort was made towards identifying the causative agent. When it was found that information was confirmed by many groups, Antibodies that detected the virus could be readily found in standard assays. With XMRV, only one group actually found evidence of this virus and that has not been confirmed in many studies. It does now indicate that that original report reflected contamination with XMRV in the laboratory. In the case of the Alter paper, different mouse viruses were detected and that finding has never been confirmed. In this case contamination with mouse material in the reagents used to detect the mouse virus was the cause of the false positives.
    3:54

    Martin Enserink:
    Mike just answered a question we hadn't posted yet. I will do so now:
    3:54


    Comment From Guest
    You say that XMRV cannot infect humans. Yet it has been proven that it can infect rhesus maquaces. How do you explain this?
    3:55

    Martin Enserink:
    Guest was referring to this study: http://www.ncbi.nlm.nih.gov/pubmed/21325416
    3:56


    Comment From Ralph
    If CFS is "chronic immune activation" without a pathogen, then would not taking e.g. glucocorticoids eliminate all symptoms?
    3:56

    Jay Levy:
    Ralph,

    Unfortunately glucocorticoids would suppress the immune system and not be specific. That could lead to infections and other conditions occurring without the function of other parts of the immune system.

    I will take this opportunity to say that with the chronic activated immune state, contact with other allergens could exacerbate the condition and that may be why CFS is maintained for many years
    3:57


    Comment From Guest
    If you were sick for 20 years and tested postive for hhv-6a, mycoplasma, EBV, CMV, aspergillis, Subclass IgG deficiency, low t3 and are always ill- progressed to having severe neuro systems where you could not even walk- and were saved by Immuogloblin- why would Immunoglobin help if the immune system is over active since it boosts the immune system. I am very upset how bad patients are treated. I almost died many times already and if not for a few doctors and my husband being a doctor from another country I would not be here. Yet- doctors do not take this illness serious, I do not care what you call it- Lyme, CFS, ME, Fibro- gulf war. Many scientists have linked to our illness to vaccines and that these are stealth pathogens- when if the US Gov going to stop the cover up? We are a tuskegee experiment- nothing else makes sense. So far Dr., Judy Mikovits is the only doctor willing to speak out about how ill patients are. When will other doctors speak out and care about patients and not the AMA, FDA, pharm, and insurance companies? Do you not care that people are dying? I lost 4 friends - I know I do not have long and without treatments I would die. Sometimes I want to die - for the suffering is so intense. What would you do if you lost your life and lived in bed and homebound- after making 300k a year and having a successful career and had a wonderful life... WE NEED TREATMENTS NOW- NOT IN 10 years- those ill 20+ years will not make it another 20. I am tired of the lies-
    3:59

    Jay Levy:
    That is why we need more funding for research on CFS and education in our medical institutions on this disease so that it is seriously considered.
    4:00

    Dr. Michael Busch:
    I have worked closely with Judy for the past 2 years, and secured funding to support her lab in the previous and future studies. But Judy needs to acknowledge that the current data fail to confirm her previous findings. I am eager and willing to continue to work with her, but only if we can objectively design experiments and interprest results with scientific rigor and without emotion or influence from her institute sponsors or patient groups.
    4:00


    Comment From Will
    Question for Jay Levy: are you saying that you believe that there is no existing agent?
    4:01

    Jay Levy:
    Will,

    My point is that in most cases the causative agent has already gone but the immune system continues to be activated against it. During that immune activation there may be other viruses that are stimulated to replicate like EBV. Importantly, we need more research looking at how the immune system can be quieted down to resolve symptoms of CFS/ME.
    4:02

    Martin Enserink:
    Okay, we have time for one more question.
    4:02


    Comment From mohamad
    What about future studies?
    4:03

    Dr. Michael Busch:
    The silver lining of the past 2 years is that there are now a number of sample sets and research labs studying CFS. Large scale studies are in progress to attempt to identify infectious agents that may precipitate or persist in this disease, as well as studies to elucidate other immune or genetic factors that cause this disease. Hopefully this expanded work will lead to effective therapies and even a cure.
    4:04

    Jay Levy:
    Mohammed,

    As I've mentioned in other notes, future research should be aimed at looking at ways of quieting down a chronic activated immune system. There is a natural balance after infection in which some white cells are activated to attack the infecting agent. Later other immune cells are present to quiet down the immune system. Studies of this interplay and balance need to be encouraged.
    4:05

    Martin Enserink:
    Alright, on that note, we have to end it. We still have lots of questions pouring in, but time is up. Obviously this is a story that will continue to be debated for a long time.
    Many thanks to Jay Levy and Michael Busch for their insights -- and to our readers for their smart questions. There will be a new live chat next week.
    4:06
     
  15. alisonnic

    alisonnic

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    Thanks for posting these additional pieces of insight, Bob. While it's true that the whole XMRV saga does seem to have legitimized ME/CFS in the eyes of many in the research community, and there does seem to be a lot more research going on as a result, the BWG's finding means that a fundamental understanding of the cause(s) of ME/CFS - and the possibility of effective treatment - no longer appears to be within our grasp in the near future. For those of us who have been sick for many years, this is terrible news.
     
    shannah likes this.
  16. FancyMyBlood

    FancyMyBlood Senior Member

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    Unfortunately they didn't post my question either. While I now firmly believe the XMRV connection is dead, I still can't close the chapter for myself until it's answered. I've already asked it to prof. Racaniello on his virology blog after the Singh or the Levy/Coffin study, but I didn't get a response.

    In this interview (http://blogs.wsj.com/health/2011/05...nk-between-xmrv-and-chronic-fatigue-syndrome/) prof. Racaniello states that "He says that other viruses have proteins that are highly related to XMRV proteins. If the patients then test positive for antibodies, it looks like they have antibodies to XMRV but they are not specific to that virus."

    To me it sounds he's suggesting there is another virus causing the antibody response. But how can we find out which virus it is? And if it's not a virus, what can explain the antibody reponse?
     
  17. Megan

    Megan Senior Member

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    FancyMyBlood,

    I agree with you. The evidence has been mounting against XMRV for some time. But at the end of the day if there is something else cross reacting with out blood that is not XMRV, then that is just as important that this is explained. It is frustrating that so many scientists seem to treat this as a side issue. I think it reveals the different angle they are coming from - they were always interested in the virus XMRV, we are interested in finding out about CFS. I notice that a similar thing was said again in the above interview:

    I haven't read the paper, but I think the most important thing is how much this has ruled out the role of MLV's other than XMRV. To this extent I thought the comment they made about testing 5 of Lo/Alter's patients was the most significant thing they said:

    It will be interesting to hear Dr. Alter's views.
     
  18. Megan

    Megan Senior Member

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    Also, another similar point I haven't seen raised anywhere. As far as I understand it the original Science paper did 2 types of PCR test:
    1) the single round PCR on the 11 patients shown in Figure 1 (now withdrawn by Silverman and the WPI).
    2) the nested PCR, on which the 67% positive figure for patients versus 4% controls was based.

    According to the Landes Bioscience article, the WPI only ever found a 7% positive rate in the patients on the first of these tests. http://www.landesbioscience.com/journals/40/article/12486/. This 7% positive is consistent with Singh's results where she repeated this test and found a 5% positive for XMRV, which she later discovered to be XMRV contamination from reagents.

    But given the large discrepancy between patients and controls in the nested PCR test, to me it still begs the question, was this picking up something other than XMRV? There is enough evidence now to show that this test would have reacted to more viruses than just XMRV. To this extent, I have found it frustrating, and somewhat misleading, that a number of scientists say they have repeated the WPI PCR testing, when they really only did the first of the above. Obviously it was the second test on which the finding of the whole paper was based, so surely that was the most important one to repeat? Even the WPI appeared to back away from this test in favour of the culture test with no public explanation as to why?

    I am happy to let this retrovirus thing go, but it would be good to get some answers on these remaining questions to put out minds at rest. I hope that Ian Lipkin is looking at more than XMRV in his studies. The deep sequencing thing sounds more hopeful. In a way I am glad if XMRV is killed off so that it will allow focus on some other possibilities.
     

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