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The Waning Con?ict Over XMRV And Chronic Fatigue Syndrome - new WPI sequences

Discussion in 'XMRV Research and Replication Studies' started by RustyJ, Sep 30, 2011.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Confirmation WPI have full sequences coming out soon. This will end a lot of speculation about what the WPI is really finding. Sentence right at the end of article. What's the bet they won't be contaminants? Coffin and co will need scour their labs for new suspects.

    I wonder where they got the money from?


    http://www.scribd.com/doc/66923259/Science-2011-Cohen-1810#
     
  2. JT1024

    JT1024 Senior Member

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    Thanks for the info Rusty...

    Can't wait to have Coffin's butt kicked.
     
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Remember Mikovits saying she believed the politics would go away by the end of the year. I think this is what she meant. I've puzzled over her remark for some time, especially in light of more recent negative developments. If so, it is going to be big. Plenty of scope for feeling optimistic here. There will be celebrations (going out to buy a balloon) and maybe a shandy (oops, gluten intolerant).
     
  4. Francelle

    Francelle Senior Member

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    Unfortunately Mikovits has said some of these predictive things all too often and nothing eventuates. Having said that I dearly hope I am wrong on this score of course!
     
  5. Andrew

    Andrew Senior Member

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    I don't know what to believe. Assuming this article got it right, is she saying it's not XMRV but a different HGRV. If so, what about all the XMRV she sequenced. Where did that go? Or maybe I'm not understanding this.

     
  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Hi Andrew, I am a bit tired so I will try to keep it brief and clear. It is complicated.

    Apparently VP62 is the only strain that most of the negative studies looked for, simply because they were using VP62 clones to prime their assays. VP62 is just one strain of the family of MLV related viruses and according to Silverman it is a lab artifact. In other words it probably was never in patients. WPI also does not dispute this.

    Now WPI, aside from Silverman, may not have ever picked up VP62, but variations, other MLVs, which from memory they may have partially sequenced. The partial sequences looked like VP62 and because of Silverman they called the other MLVs, XMRV (a generic name for a family of viruses). So what WPI is finding is not VP62, hence not contamination, but a family of MLVs, better known as HGRV or Human Gammaretroviruses, because they are not lab artifacts like VP62.

    The full sequences will show this variability from VP62 and leave all this talk of contamination behind.

    It appears that most of the scientific community knew about the Silverman issues some time ago. And have colluded to paint WPI into a political corner. in response WPI have somehow found the money to do full sequencing. So they have made the move I hope will break the political deadlock.

    It is worth noting that without the VP62/XMRV samples, the Lombardi study is more or less the same as Lo. Both found families of MLV-related viruses or HGRVs in samples. Hence the removal of Silverman's contribution now makes Lombardi and Lo stronger. Unfortunately the term XMRV will be sacrificed.

    I hope I haven't messed this up.
     
    justy likes this.
  7. Firestormm

    Firestormm Guest

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    Thanks for finding the full article Rusty.

    '...In Ottawa, Mikovits came out swinging. But she didnt make the case for XMRV, which stands for xenotropic murine leukemia virusrelated virus.

    Instead, she offered new evidence that people with CFS (known as myalgic encephalomyelitis in some countries) had a virus highly related to XMRV.

    Unlike the original study that appeared in Science that showed entire sequences of XMRV and infection of fresh cells, Mikovits revealed only partial viral sequences that she said were from the XMRV and MLV family known as gammaretroviruses.

    She said her team, which includes Francis Ruscetti of the U.S. National Cancer Institute in Frederick, Maryland, also had preliminary data that suggest these gammaretroviruses may travel through the air. Thats pretty scary, she said...

    ...Mikovits said she hopes to have full sequences of her new viruses in a couple of weeks.'

    This is quite some claim isn't it? A retrovirus that is spread through the air. I hope she does manage to produce some evidence for this latest hypothesis but it sounds rather desperate to me I am afraid.
     
  8. Andrew

    Andrew Senior Member

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    So what would be the reason for Mikovits and the FDA not having a clean finding this time, considering they found it before.
     
  9. Firestormm

    Firestormm Guest

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    At the moment Lombardi et al stands doesn't it? Except the 'XMRV' believed to have been discovered in CFS patients blood is said to now be 'HGRVs'? So wouldn't Mikovits have to produce a new paper and see it peer reviewed in order for this latest twist to become validated?

    I don't know the science Andrew I am no scientist. But I would have thought that any claims made by WPI will need utmost transparency with regard to contamination. There is a big issue I would have said now over credibility, and Mikovits does seem to say rather a lot at conferences without producing the data to back it up by way of peer-review.

    I believe she said she had funding secured from the Government (?) to continue her research. Well I would imagine a paper would be forthcoming out of that. As for these sequences - she says two weeks - so will have to wait and see although previous sequences have I understand looked remarkably similar (if not the same) to VP62.

    I guess her evidence for claiming this latest hypothesis (or continuing to claim the existence of more than one 'XMRV') is going to have to be solid.
     
  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Maybe that is something the lab workers should know about. It would be easy to prove. We already know it was found in saliva (I think it was saliva or respiratory tract that the Germans found it in). All they have to do is prove it survives outside for long enough. Saliva is aerosoled all the time when you sneeze or talk.

    I don't think it is easy to catch though. It has to survive some mechanisms in the body such as Abopec3. But it does survive in some instances. This may also be loose wording from Mikovits. Does spreading infer infection? She may simply mean it can be distributed this way. After all, not sure of her exact words. Article may not reflect exactly what she meant.

    Sequencing is more than a hypothesis. Much more. Since the Lombardi/Lo papers, it is the most significant step to be taken.

    @Andrew. Politically, the negative bunch will continue to isolate WPI, irrespective of their motives. They may endeavour to prove the new strains are also contamination. I am newly hopeful that WPI can continue without other scientific support. It appears that they found the money for the full sequencing, so maybe they have a bit more up their sleeve to hold out.
     
  11. Firestormm

    Firestormm Guest

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    Thats pretty scary, she said...'

    Why does she use such language though Rusty? I don't understand. I mean if you could prove this to be the case, if you could prove your theory - wouldn't you present that proof before saying such a thing?

    Regarding the BWG paper I would like to hear from Mikovits. A statement or something in writing you know? Explaining it to all those who have have been tested positive for 'XMRV' and explaining things to them.

    There seems to me to be an obligation for the WPI and/or Unevx to explain what has happened don't you think so too?
     
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Re a reliable assay and Unevx: I don't know. There have been many contradictory things said on the forums (ha, I have been the source of some of them). I am sure we will get the full story soon. Don't forget WPI have had everything bar the kitchen sink thrown at them. A bit of patience may be required. Also, perhaps they are waiting for something to be resolved before they say one way or another. Perhaps they are waiting for the sequences to be published. Certainly it was the right thing to do to stop testing, if there is any doubt whatsoever.

    Ditto for BWG. There are things I don't understand either. A great many things. This is how I see it though: The WPI may be waiting to get its story straight. It's all right for the negative studies to rush through in a couple of weeks. Look how careful Lombardi tried to be and how long their study took. Thank God they used a number of labs. The worst thing is if WPI comes out with some half baked ideas of what went wrong with the BWG, giving even further ammunition to the anti crowd.

    Re the language. When she says its pretty scary, it does indicate to me that she thinks infection can be spread by air, not just that the airborne virus is found alive. Not sure what you are getting at here. I think its scary. Should she have not used that word, because it wasn't in a study?

    Anything Mikovits has said previously has been backed up with some sort of validation sooner or later. If she said it can be spread by air, then there are grounds for her to say that. Why do you need a published study to back up such a statement? I am sure there will be validation one way or another. But if there is a possibility then I would like to know about it now rather than wait several years for a study to be published. On a personal note, I haven't touched or gone near a baby or a young child for years because of the the unknowns about this illness.

    One point though, you don't see Mikovits or WPI or Lombardi et al hit out at disaffected patients when they have a win. Why is it that the ERVs, Racianellos, Coffins etc, even the anti HGRV posters, suddenly pop up out of the woodwork to gloat, send out immature images, feel the need to belittle the hopes of sick people.

    I've said it a couple of times today, I play the people in this issue not the science, contrary to what our self appointed betters tell us we should be doing. The science I don't trust. People who sacrifice everything for ME patients, that's who I trust.
     
  13. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    There is also another possibility, that the new full variations won't show enough variation from VP62 to be convincing. But I don't think this will happen, as HGRVs replicate by cell mitosis, thus reducing mutation, as far as I understand it. Besides new variations have already been sequenced and registered by others.
     
  14. FancyMyBlood

    FancyMyBlood Senior Member

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    This is not true at all. In contrary, almost everything Mikovits has said is either proven wrong or she can or will not back up her statements with data. (XMRV is NOT contamination, XMRV is not a lab artifact, XMRV is associated with autism and several other diseases, her assays are right and all the negative studies are wrong)

    Your last statement, (The science I don't trust) is so clearly a fallacy I have a hard time to take you seriously. Science is the ONLY thing we can trust and it's the only way to get a cure.
     
    Firestormm likes this.
  15. paddygirl

    paddygirl Senior Member

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    Thanks Rusty, you have put into words my own feelings that I can't articulate as well.

    I often think WPI are between a rock and a hard place. Back when this all started, I remember patients clamoring for a test. Obviously it was premature, but some companies were offering it, and WPI stepped in. I do think their hand was forced as they could see what would happen with this unethical behaviour.

    All this new media has it's downside too, and Dr M and co would have to be the worlds best spin doctors to get it right. Damned if you do and damned if you don't. I once asked Dr M at a conference if she found the hostility toward patients and the science shocking. She said she had been warned by a colleague that the field was thorny for scientists (my words).

    Even now with the latest news, I feel Dr M must have known Dr Silvermans news for some time but had to proceed with the BWG anyway. It was up to Dr Silverman to break the news, not her. Again to my mind, an example of scientists behaving ethically.

    One thing I really hate is the portrayal of patients as being deluded for their continuing belief in WPI. As you said its the sheer humanity and decency of the people there and all associated with them. This can't be faked.

    I'll be at a conference next week in Tullamore Ireland at which Dr Mikovits is speaking. (Oct 9th) If anyone has any questions let me know and I'll try to get an answer. Mind you I'm pretty simple so the questions will have to be simple too.:confused:
     
  16. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Thanks paddygirl. I just wish her the best. I've waited for 20 years for answers, I can wait a couple of weeks.
     
  17. Bob

    Bob

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    Well, you can equally say that the scientific consensus is now that XMRV is a distinct novel gammaretrovirus that lives in human tissue, so Mikovits was proved right about that when so many others were proven wrong when they said that XMRV was purely mouse contamination.

    So many scientists stated, concluded, or implied that XMRV was purely mouse contamination at the beginning, and so their reputations could equally be picked apart.

    I don't blame people for being frustrated with the WPI, but I think this frustration always needs to be put into the context of how other scientists behave. But that's just my personal opinion.
     
  18. Bob

    Bob

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    I shouldn't speak for Rusty, but I think that Rusty means that he trusts long-term and solid science carried out by scientists who he trusts.
    Rather than quick and easy conclusions made by scientists who he doesn't particularly trust.

    We have to evaluate the science for ourselves, to spot its strengths and weaknesses.
    For example, if we were to trust 'science' 100%, then we would believe the conclusions of the PACE Trial, and take then at face value.
    The PACE Trial is supposed to be science, but it is corrupted, flawed and spun 'science'. It has little bearing on reality or the facts.
    The theories behind it, and its conclusions have no bearing on the reality of ME, and in fact the study is dangerous for the ME community.
     
  19. Esther12

    Esther12 Senior Member

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    I think that the WPI have made a number of poor decisions (quite aside from the matter of whether the core of their work is in error), and selling the XMRV test when they did was one of them, but you're right to point out the extenuating circumstances that surrounded the decision. When people criticise the WPI's decision to sell a test, they often fail to mention that it was in response to another test being marketed.

    I also think that it was really unfortunate that Wessely was associated with the first negative study, as that led to it being viewed in a much more politicised way than would otherwise have been the case.
     
  20. Dreambirdie

    Dreambirdie work in progress

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    HI Rusty--

    Thanks for posting the article and for your explanations. I have been trying to find some clarity on this issues, and thanks to you I think I got it. :Retro smile::thumbsup::thumbsup:

    I have to agree with you on your statement above (my bold). When people say "trust the the science and not the scientists," that's like saying trust the plane, not the pilot. Really ridiculous.

    THe history of science is a history of one self correction after the next. Thank goodness for the researchers who defied the thinking of their time and persevered to find the RIGHT answers. If it wasn't for Koch's discovery of the Mycobacterium tuberculosis in 1882, the "science" of that era would have had everyone locked in to the belief that TB was a "romantic disease" of spiritual purity and heightened sensitivity, that could be remedied by a retreat from the world in a sanatorium. If it wasn't for Charcot's recognition of multiple sclerosis as a distinct physical illness with a specific pathology in 1868, the "science" of that time would have persisted in defining those with MS as having ''creeping paralysis,'' as it was called in those days, which was considered a mental condition caused by ''female hysteria.''

    I am glad we have someone like Judy M in our corner, doing all she can do to find the answer for us. Who else COULD we trust? No one else in the scientific research community has really given a shit (pardon my french) about us.
     

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