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From the 1st annual XMRV conference

Discussion in 'XMRV Research and Replication Studies' started by George, Sep 7, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    I think it would knock peoples socks off. That phrase right there really re-invigorated my support of the Campaign. We need to go on the OFFENSIVE! We have put up with crap for so long - I think we have to as bold as possible. If we go over the top a bit we go over the top but we have to catch peoples attention!
  2. VillageLife

    VillageLife Senior Member

    United Kingdom
  3. jayhawk


    "I believe that Cohorts are going to become less and less important now that it is accepted that HMRV is real, and that it causes a disease. Simply put, if you test positive for HMRV and you feel ill, then you've got HMRV-related disease. I guess that diagnostic criteria will still be important for those who don't immedicately test positive for HMRV's but definitely have ME, and there will be more research needed for these cohorts."

    I have to play devils advocate here. I dont believe its accepted, nor is there any conclusive evidence in the public arena that establishes that this group of viruses cause disease, let alone cause ME. Am I wrong? The work of the WPI is very highly suggestive that this virus is at the very least contributing, but to my knowelege even they are stating publicly that its a theory they are working off of that has yet to be proven anywhere near conclusive. Its certainly a possibility and every ounce of effort should be put toward proving it one way or the other. Its also very likely that the WPI knows things we dont that proves your opinion to be true but my feeling its that we as the non-information-privileged public simply cant make that statement. Even with these immune associated markers we have heard about, its possible that they came before the virus and only those with that immune profile are susceptible to active viral replication. Finding whole, infectious virus in plasma isnt proof either. We can find active, whole pathogens of a variety of natures in ME patients too. I would, however, find it hard to believe that you can have whole infections virus in your blood without it causing at least some level of disease but until they can tell us conclusively what its causing and where its causing it then we just cant say it causes disease just because its found in sick patients.

    I have hung on every word about this since last October and I have yet to hear anyone produce any direct evidence supporting that its been accepted/established. Everything is highly suggestive. Its not sufficient either to point to other pathogens and their behavior or the fact that its a retrovirus as proof that these viruses work similarly and therefore a major contributor to the disease process.
  4. Bob


    England (south coast)
    Hi jayhawk... no you are not wrong... you are right to point that out... I was jumping ahead of situation we are presently in... and looking towards, hopefully, the near future, where I think this situation will arise... Thanks for pointing out my errors... If high numbers of ME/CFS patients continue to test positive for HMRV, then it will become accepted that HMRV is associated with a disease process... At some point they will start to test for HMRV and to treat HMRV-associated disease, if it proves to cause disease or symptoms, without the need for diagnostic criteria for ME/CFS... At this point then diagnostic criteria for ME will become superfluous apart from ME patients who do not test positive for HMRV's.
    These are just my own thoughts on the future.
  5. hensue

    hensue Senior Member

    I know I am not as smart in explaining things as most of you. The only reason I think we are here in the first place goes back to prostate cancer. The big C is the fear monger.
    If xmrv or variant or whatever had not been found in aggresive prostate cancer we would not be at the NIH. When you start talking about Cancer people listen. Especially prostate cancer. Men listen and women believe me I hate cancer both my parents died of it. I hate to say this but it is still a man's world.

    At first no one agreed about xmrv in prostate cancer. I believe they do now.
    This could be all wrong I am stating if so just ignore it.
  6. bullybeef

    bullybeef Senior Member

    North West, England, UK
    That's really interesting point, and not being scientifically minded at all, could someone answer this question.

    If the body creates antibodies to fight XMRV, which in turn proves XMRV infection, why would the body create an antibody to something that isn't causing disease? Does an antibody to a foreign infection, or an attack on the body's immunity not equal disease?

    There’s probably a simple answer, but it if someone could humour me, it would be appreciated.
  7. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Re: Causation -
    So far, the Science paper (WPI et al) and the Lo/Alter paper have only proved a 'strong association' of retroviruses with ME/CFS (and not even with the same viral agent).

    When Dr Ila Singh was asked how we might go about proving causation , not just association, (in the TWIV Virology podcast interview with Dr Raccaniello etc a few weeks ago), she suggested animal models. Then the Canadian commentators in the PNAS paper suggested clinical trials with ARV's (if the patients get better - there's your proof - as we have heard). Following up blood donors who are known to have received contaminated blood 10-20 years ago might be another third possible way - once everyone can find the retrovirus and if it is then proven to be in the blood supply officially.

    However the v first thing they have to do is standardise the assays, I would have thought, which is what they are working on now, to make sure that everyone (WPI, CDC, NIH, the Blood Group, UK, rest of Europe or whoever), is/are all singing from the same hymnsheet. This appears to be what some of the discussion in the Q&A was about yesterday.

    Re. Contamination -
    I mentioned this in an earlier post (?about 20 pages back) in my 1 & only comment on Huber who asserted 'contamination', and as Bob's recent post says above - both the WPI and Lo/Alter paper went out of their way to prove no contamination, and I thought that the general concensus, especially after the Lo/Alter researchers had taken the extra time to do the extra research, was that yes, contamination was now generally agreed to have been ruled out (the contamination issue should be over - what are we missing?)

    Surely if someone's lab was contaminated - they would be getting a 100% positives with exactly the same pathogen, and so would all the labs that have handled the WPI's reagants etc - that hasn't happened. Also, the pathogen seems to have changed slightly/mutated with the intervening years (Lo/Alter going back to check same patients and taking new blood samples), as Bob I think commented.

    I guess what they really need to do, as one of the reviewers for the PNAS paper suggested (& which Editor Randy Shekman reported was the reaon for the delay in the paper's publication) is for Lo/Alter to see whether the retroviruses they found have been incorporated into the patients' genomes (?do I have this right.)
    But then how would they know it was not endogenous?! Anyone know please?

    Anyway I hope I have reported the above facts correctly and not doubled up too much on anyone else's comments.
  8. Esther12

    Esther12 Senior Member

    That's not much of an endorsement Bob! I certainly don't think we can have blind faith in those who happen to currently be classed as experts in whatever field, but I'm still keen to not get too carried away with XMRV while a lot of virologists seem rather uncertain. Especially because I know how emotionally involved I am with it.

    I don't really know what I'm talking about... but the immune system can cause problems with transplants. Allergies are often a result of the immune system attacking unnecessarily. So immune activation alone doesn't prove that XMRV causes damage to the body.
  9. Bob


    England (south coast)
    Endogenous retroviruses are part of the human genome... They are a part of our hereditary DNA, and as such, they are integrated into the DNA of every single cell in our bodies...
    They are an inherent part of our genome, just as the colour of our eyes are coded into our DNA.
    Exogenous retroviruses insert themselves into our DNA, but they don't get into every single cell of our body... And they are not hereditary.
  10. Sasha

    Sasha Fine, thank you

    What a pity the researchers at the workshop (and elsewhere) working on MLVs aren't obliged to collaborate in the way that CAA grant recipients are. Someone mentioned on another thread that the state of research must actually be months ahead of what was possible to report at the conference, due to the restrictions on people on reporting ahead of publication or institutional constraints.

    There was clearly a lot going on behind the scenes, though - for example, I noticed on the transcript of the Q&A a statement by Stoye that I had forgotten, saying (in response to Mindy's questioning, I think) that they weren't going to discuss the CDC or the "situation in the UK". The situation in the UK wasn't otherwise mentioned at all during the Q&A - Stoye's reference to it was the only mention. It must therefore have come up - bigtime - earlier in the workshop for Stoye to be so pre-emptive about it in his chairmanship.

    I think that all points to the scientists being politically aware but also politically astute in not having a big argument about it in public. I would hope they're gossiping at least somewhat productively about their research findings, even if not in front of us!
  11. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Yeah i think that too.. now certainly isnt the time to be laying low.
  12. George

    George waitin' fer rabbits

    South Texas
    A Dogs Opinion on the whole mess

    I think the conference didn't settle anything in the public arena for a very good reason. What we witnessed yesterday was a major power struggle going on. And it's not over yet. The two camps are Ruscetti/Mikovits/Lombardi/Silverman vs. Collins/Fauci/Lo/Jones.

    Everybody else is on the outside looking in.(grins)

    I don't know for certain but I'm pretty sure that the language used in the Alter/Lo paper was originally set up to wrest control of the research from the Ruscetti/Mikovits/Lombardi/Silverman group and put it firmly in the hands of Collins/Fauci/Lo/Jones where it could be more easily managed.

    The problem I have with the PMLVs being in the same family of Gamma viruses they all have similar sequences in the LTR's (long term repeaters). If you don't isolate and cross reference several hundred sequences you really don't know what you've got. I was ecstatic that Dr. Coffin said it out plain and simple that the sequences that Dr. Alter and Dr. Lo pulled tell us absolutely nothing. They may be Polytropic or they may be Xenotropic. There are less than 700nt per each sequence and you really can't tell from that. Even going off of the env sequence is questionable because many MLV's in the Gamma grouping share the some of same env sequences.

    It seems to me, especially after watching the Q and A yesterday that Ruscetti's group is firmly in control and has so much information and backing that they are the ones driving the boat. They have the ability to take this research in any direction they see fit and the Wittemore's and Ruscetti's are powerful people who know powerful people and have the backing of an incredibly large group of small people (us) who create a vortex of power by shear numbers.

    Dr. Mikovits may be the mouth piece (some times quite literally, grins) but make no mistake Frank Ruscetti and his wife are in charge. You could see a smugness about them yesterday. Not only do they have research that is way in advance of what was presented but they are controlling who knows about the advanced research and what direction those researchers take in building on it.

    Meanwhile down on the farm you have the researchers who are more main stream following the lead of Collins and company. The Collin's crew is also trying to manage who knows what but for different reasons. The Collins group wants control of this information to use as leverage on several fronts.

    First controlling the research you control the money going to the people doing the research which means you control the people receiving the money and they owe you favors in return which can be used to create more favors from other people and so forth and so on.

    Second controlling the research allows you to control the message. If they can make the diagnosis and treatment of ME/CFS follow the same path as the H. Pylori work then the public would never know about the miss-steps in the past and no one would get egg on their face. Patients however, would prefer a more HIV type message to the public. In this scenario congressional hearing would be called and at least on a TV level people would be vilified for decades of miss-treatment of a large group of patients. Collins et al wants to avoid this scenario.

    (H. Pylori - Dr. Marshall proved that bacteria caused stomach ulcers and antibiotics would literaly cure them. It took down a huge industry of surgeons who operated on hundreds of patients per year to remove ulcers and portions of patients stomachs. It was believed that the ulcers always came back because people engaged in the same stressful and poor habits after the surgery. Ulcers were caused by stress, poor eating habits and drinking. The new form of treatment was implemented very quietly over a five year period and no one really new about the change unless you were a patient.)

    Third controlling the research in to XMRV will also provide leverage with the Pharmaceutical companies the kind of money that stands to be made here is in the Billions with a capital B. If Ampligen cost 20 thousand a year to take and only say 10 million of the 17 or more million people take it then you are looking at 2 Billion a year in revenues for the first 7 years. That's a lot of Bucks. A lot of Pharma companies would be willing to stuff cash into political campaigns, kickbacks and honorary job titles for that kind of money.​

    So we have a tug of war on who gets control of research. There are way more answers than were presented yesterday and some of it leaked out like the Urine Test (grins). But it's not being presented because of the power struggle. The Ruscetti's are hording information so they can come out and make a big splash. The Collin's crew is suppressing information until they can get control.

    That's why no one has made a definitive statement that XMRV actually causes ME/CFS. YET.
  13. Bob


    England (south coast)
    I'm guessing a bit here, but I imagine that there are many bacteria and viruses that activate our immune systems but that don't actually cause disease, illness or any symptoms.
    A totally successful immune response might not have any symptoms or illness associated with it... Our bodies just get on with fighting invaders quietly in the background, day-in day-out.
    So yes, an antibody does show that there is an immune response, but it doesn't prove an associated disease, or that the virus causes disease.
    I think that there are many viruses and bacteria which we have evolved to live in harmony with, but that we do have an immune system response to.
    Please anyone correct me if I'm wrong about this.
  14. Bob


    England (south coast)
    Thanks George... interesting post... it's food for thought!

    Yes, it does make me wonder the value of Alter and Lo's research, other than validating the WPI research.
    Even XMRV has polytropic gene sequences in its RNA, so is it possible that Alter detected the polytropic gene sequences of a Xenotropic MLV-related virus?

    I love it! I've never heard our community described as a "vortex of power" or, actually, anything with the word 'power' in it before! But I love it!
    "We are a Vortex of Power!" (Shall we repeat this mantra together, over and over, many times?!)

    I wish they'd share Ruscetti's research with us! What does he know that we don't know yet?!?

    Thanks for bringing these power dramas to our attention George... it explains why their cards are being played so close to their chests!

    I hope it's good news for us that the different teams are now competing with each other, apparantly trying to acheive the best results the quickest!
  15. consuegra

    consuegra Senior Member


    Your assessment is excellent, really perfect. You see the picture very clearly. It is a battle with one side having all the information and the other side trying to figure out what to do. A defining moment came in this public forum yesterday when an ocoologist from Buffalo asked a key question, the only really sharp question of the session. I would like to know this guy's name in order to send him an email.

  16. leela

    leela Slow But Hopeful

    Couchland, USA
    Judy made many strong points, but the following quote, in my opinion, speaks volumes in favour of XMRV or whatever MLV
    being a very likely causative factor in the underlying immune deficiency that allows such a varied expression of illness:

    "Retroviruses are not ubiquitous and they’re not generally benign – so the kind of biology that we’ve looked at with HTLV1 with the HTLV1-associated myelopathy and the acquired immunodeficiency virus, HIV. That’s a reasonable hypothesis. So it has not been a passenger in the other human retroviral-associated diseases so there is no reason to expect that it would behave other than another human retrovirus. But of course this is the first human gammaretrovirus. So Sandy (Ruscetti) knows in that family of viruses the envelope is both an oncoprotein and a neurotoxin. We heard yesterday about HIV creating a dementia distinct from the immune deficiency based on the viral envelope protein, so these are all hypotheses that we’re following."

    As someone who has remained skeptical about XMRV being a causative factor, this argument seems *huge* to me, and causes pause for reframing...

    Seriously, I had no idea that the other retroviruses acted as as an oncoprotein and a neurotoxin. This explains so much about XMRV, since it is associated both with the (highly feared and attention-paid) prostate cancer, and our little bout with fatigue.
  17. OurDayWillCome



    Ha! Your posts echo my thoughts, George. At first I was pleased that the group found something... almost anything would do, as long as there was something. But I started wondering why they didn't find XMRV!!?? With that question, my thoughts wandered around until The Genome War popped up.

    Anyone remember the Genome War? The situation is not exactly the same, but there are some very real similarities. :~)

    A bit of reading for those who would like to know a bit more::,1518,709174,00.html
  18. Scavo86

    Scavo86 Senior Member

    This is what's occurring over in Sandra Ruscetti's lab...I think the following paragraph sums up what is actually going on far better than the conference Q&A kind of cuts the bs and lets us know where we are and what the next steps are...happy days!!!

    We are currently using knowledge and reagents obtained from working with mouse retroviruses to study the xenotropic MuLV-related human retrovirus XMRV, which was recently discovered through an association with prostate cancer. In collaboration with the laboratories of Judy Mikovits and Frank Ruscetti, we were able to use antibodies developed against the envelope protein of SFFV to detect infectious XMRV in the blood cells and plasma of patients suffering from the neuroimmune disease chronic fatigue syndrome (CFS). We were further able to develop a seroconversion assay using cells expressing the SFFV envelope protein to detect antibodies against the virus in the plasma of CFS patients. We now plan to apply our knowledge of the pathogenesis of mouse retroviruses that cause cancer and neurological disease in rodents to study the molecular basis for similar diseases associated with XMRV. We are in the process of developing rodent models for determining the biological effects of XMRV in vivo, which if successful will provide a small animal model for preclinical testing of potential anti-XMRV drugs. In addition, we are testing both in vitro and in vivo the biological effects of the envelope protein of XMRV, which like its related SFFV counterpart may be responsible for the pathogenicity of XMRV.


    Collaborators on this research are Dr. Frank Ruscetti, Laboratory of Experimental Immunology, CCR, NCI; Dr. Larry Keefer, Laboratory of Comparative Carcinogenesis, CCR, NCI; Dr. Judy Mikovits, Whittemore Peterson Institute; Drs. Candace Pert and Michael Ruff, RAPID Pharmaceuticals.

    Now is not quite the time to lose hope, we are on the radar!!!
  19. Recovery Soon

    Recovery Soon Senior Member

    Is this why Judy declined to answer the ARV question?
  20. Sing

    Sing Senior Member

    New England
    Thank you, George! (for post #493)I have always thought that dogs are smarter than people and now I am sure. You have got the science, and the politics and you've got it organized--analyzed and organized up to now.


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