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Proposition to put the XMRV discussion here on a more profound and scientific basis

Discussion in 'XMRV Research and Replication Studies' started by Waverunner, Jun 6, 2011.

  1. Waverunner

    Waverunner Senior Member

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    I've been following the forums and especially the XMRV discussion for a year now. We have many people outside this forum who are contra "XMRV" and neglect any connection to CFS. On the other side we have many people here who support WPI and see the XMRV discussion far from over.

    The great problem and biggest chance for progress in this field in my eyes is the fact that currently there is no interchange between these two opposing sides. Both sides are convinced that they are right and members of both sides try to convince other group members that their side is right.

    We have many intelligent people here who read the studies. They make very interesting arguments which all seem valid and scientific. The other side does the same and the other side has many studies on their side. The problem and this is the only point I want to make, as long as both sides don't talk to each other, progress will be very slow. Most people here are layman regarding virology. Maybe it would be better if people who have arguments that speak for WPI or XMRV confront virologists with their questions.

    Vincent Racaniello has a geat site and the comment section offers a great possibility to discuss XMRV but many questions stay unanswered as as long as Gerwyn keeps his troll like behavior it will be very hard to have a solid discussion. So my thought is that in case of valid questions/arguments pro XMRV it would be very good to speak to real virologists and maybe post the answer here, instead of keeping the discussion to mainly PWCs only who do not have a virologist background. Most of us are layman so we cannot counter any pro/contra XMRV arguments even if they are completely false. Putting the discussion on a more profound and scientific basis would be a very good thing in my eyes.
     
  2. eric_s

    eric_s Senior Member

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    I agree it would be good to have more expert views, but i think a problem is that even among virologists there is this divide. So it will probably depend on which virologist you ask.

    Vincent Racaniello, for example, has said some things that i didn't like too much. Alan Dove (on the same site) even more. Don't know if he's a virologist, though.

    And then, even if you ask a virologist, that person might not be able to tell you the full truth for whatever reasons (confidentiality agreements, embargos, politics, patents, etc.)
     
  3. Jemal

    Jemal Senior Member

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    This is the problem really, the divide between scientists. I don't know who we should turn to.

    Alan Dove has made some snide comments about ME/CFS, so I know I wouldn't turn to him.

    Lipkin has become somewhat of a judge on the matter, but I have the feeling we can't just flood him with questions. Also I have no idea if he is truly neutral.
     
  4. ukxmrv

    ukxmrv Senior Member

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    Waverunner,

    I find that although there are great virologists out there who will answer my emails, the majority say that any answers must be kept confidential. Can't get permission to repost the answers to internet groups and this was from the very start. My questions are being answered but I've learnt that they need to be very good questions. You need to intrigue the curiousity of the person the question is directed to. Virologists are getting sick of the Virology 101 questions and the "when did you stop beating your wife" ones. Sadly, if a question exposes a flaw in their argument, many just stay quiet.

    Your comment about another patient (Gerwyn) is offencive though. Could you not have typed this out without including something awful like that? The patients are not to blame for the secrecy. There are plenty of Virologists who will supply quotes to papers and/or use their own blogs and websites but will not answer straight public questions and will not consider other points of view.

    I think that you will find that the main players are exchanging views and questions at conferences. However, they do not all want them to be in the public domain.

    Maybe it would help if you gave an example of a question that you wanted answering and then who you expected to answer it?
     
  5. Angela Kennedy

    Angela Kennedy *****

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    I'd like to second that objection to the offensive comment about another patient.

    But as regards the 'virology 101' questions, firstly, these have generated some key flaws in certain claims being made by some of the scientists, secondly, they are mostly NOT of the 'when did you stop beating your wife' type of questions and thirdly, scientists are supposed to be able to explain their work to intelligent laypersons: indeed some of them get professorships based on that ability to teach (even to 'virology 101' type undergraduates!)

    This whole thread smacks of an irrational condescencion towards patients and their supporters, who have a fundamental stake in the correct scientific process being played out, and who have not been able to rely on this happening because of politics and bad science, which this often intelligent, increasingly knowledgeable community has been able to identify when others cannot.
     
  6. Jemal

    Jemal Senior Member

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    Like ukxmrv I have found out that most of the time you just won't get an answer.
    In a perfect world these professors should be able to explain it to us, but we are not their students and they are not taking their time to explain things to us. Then there's the problem some of these professors could be biased and you get answers that mean nothing.

    Take for example Racaniello: he is trying to answer our questions, but some of his answers look a bit funny to me. He is basically saying that XMRV is dead, but there are other professors saying XMRV is alive. This can be very frustrating. I don't think we can do anything about it though, besides studying virology ourselves... which is out of the question, because my mind has become a wreck.
     
  7. Esther12

    Esther12 Senior Member

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    Personally, I'm not sure how much we patients have to contribute to the discussion at this point.

    Things don't look good for XMRV, but we've got the Lipkin and BWG studies coming. If the WPI can distinguish between CFS and control samples under independently blinded conditions, then we need to find out how they're doing it, if not then it's over.
     
  8. Angela Kennedy

    Angela Kennedy *****

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    Well - this is like PACE really. The discrepancies are being identified by patients and their advocates. Ironic, amazing, but there it is.
     
  9. floydguy

    floydguy Senior Member

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    This smacks of let's leave it up to the experts. Experts are sometimes worse than lay people because they don't even entertain the notion that they could be wrong. Also as we've seen there are frequently conflicts of interest that get in the way of these experts seeing things clearly. Time and time again we see the dangers of industry think; the tendency of people in entire industries adopting the same dogmatic ways of thinking. Having outside eyes and ears even from lay people is a good thing.
     
  10. Esther12

    Esther12 Senior Member

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    I think XMRV is, at this point, something which can be 'left to the experts' - at least far more so than Pace or any of the psychosocial CFS stuff.

    Either XMRV is detectable in a greater proportion of CFS patients' blood than healthy controls, or not. It increasingly seems that, for labs outside of the WPI, it's not. We've now got a couple of studies going to test the WPI themselves.

    This is the sort of finding that the scientific process is pretty good at assessing... unlike a lot of the usual CFS research, which is more social 'science' or philosophy, where there's a lot more room for prejudice.

    I did have some concern at the start that preconceptions about CFS would mean that the potential link between CFS and XMRV would not be examined properly because of the prejudices that can surround CFS. The Alter paper meant that even if this were the case, solid evidence against a link needed to be found. It sounds like the BWG is taking this seriously. The Lipkin study is exactly what I wish had been set up two years ago. We've got good scientists on both sides of this, looking for evidence to support their claims. If XMRV is detectable in the blood of CFS patients at consistently higher rates than healthy controls, then conclusive evidence of this should soon be forthcoming.

    I think some patient involvement was useful at the start, but I'm not sure what more we have to contribute at this point (I am a virology dunce though - although I'm rather doubtful Gerwyn is that much better informed than all those he attacks for their ignorance).
     
  11. eric_s

    eric_s Senior Member

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    Esther, please... i never had any personal issues with you, but how can you say this? If we look at all the strange behaviour amongst "experts", how can we then trust them to do the right things? And also just today there was quite some talk about Maureen Hanson's study here. A blinded study that found HGRVs significantly more often in people with ME/CFS as compared to healthy controls. I agree there have been negative studies and they outnumber the positives ones, but is this your definition of something looking bad? Don't these findings make you curious and raise questions about the negative studies? You say labs other than the WPI can't comfinrm the WPI's findings, when that's just not true.
    If i look at what has happened since Lombardi et al., i don't get the impression the scientific process is very good at assessing that kind of finding. I still have confidence it will come to the right conclusion in the end, but what i've seen so far did not really raise my opinion of the scientific community (or good parts of it). I think the process can be vulnerable and one needs to keep his eyes open.
     
  12. Waverunner

    Waverunner Senior Member

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  13. ukxmrv

    ukxmrv Senior Member

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    Waverunner,

    Can you please give us an example of a question that you want answered and by whom?
     
  14. madietodd

    madietodd Senior Member

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    I was excited when I read Waverunner's 1st post. I haven't got the brain right now to understand what's going on with the science behind XMRV. I love this idea of everybody pooling any information they get from scientists working in this field (as opposed to us bandying around opinions). I DID read all of these posts, and I understand that virologists are apparently reluctant to go on record with what they know, so maybe this idea won't work. But it would be wonderful for interested fuzzy-brained people like me to have a thread that's just full of the known facts as they emerge. Is it found in the blood? In tissue? Only in the prostate? Only in contamminated lab samples? If there is science backing up any of these claims, I'm interested to hear about it.

    At Thanksgiving I don't bring up politics because I want to always feel safe with these people who support me. Maybe there are things that just don't need to be said here, even if objectively they can be proven correct [trolls on other forums, obviously]. Note I said IF; I know nothing of this person.

    Madie
     
  15. currer

    currer Senior Member

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    Ah, Jemal, I have never found this about your posts!

    This thread has elicited some very interesting responses.
     
  16. Navid

    Navid Senior Member

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    I think this is your personal opinion that some may agree with and others disagree, but in the end it is a personal attack vs. gerwyn......whose loud brash questioning may be what saves our me/cfs butts in the end.

    i too request that personal attacks vs. gerwyn be removed from this post....especially as he is not here to defend himself...you are attacking another sick patient...who's style you disagree with....not cool in my eyes....i thought this stuff was against this forum's policy.
     
  17. Wayne

    Wayne Senior Member

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    Deleted... although I have to disagree with your assessment that what I wrote was an attack. I don't think it was either loud or brash, attributes you seem quite ready to accept from someone you perhaps agree with. In the end, manner matters. I do not believe unending loud and brash helps our cause. Just my opinion.
     
  18. currer

    currer Senior Member

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    I can agree with both sides here.
    I do not think this discussion has so far constituted a personal attack on anybody. I can understand that Gerwyn gets very angry about what he perceives is being done to us by government and industry and there have been times when I have been glad that he has refused to shut up!
    However, too much of this can be counterproductive, and it is not wrong for anybody on PR to debate this.

    QUOTE=Navid;185119]I think this is your personal opinion that some may agree with and others disagree, but in the end it is a personal attack vs. gerwyn......whose loud brash questioning may be what saves our me/cfs butts in the end.

    i too request that personal attacks vs. gerwyn be removed from this post....especially as he is not here to defend himself...you are attacking another sick patient...who's style you disagree with....not cool in my eyes....i thought this stuff was against this forum's policy.[/QUOTE]
     
  19. Esther12

    Esther12 Senior Member

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    I agree with this... I just think that things like the Lipkin and BWG studies are good approaches to getting final answers here. Unless there is some incredible conspiracy, then if the WPI's claims are accurate, these studies will show that to be the case.

    The way XMRV has been examined doesn't make me think that the scientific process is terribly quick or efficient (I think most scientists who've watched this story unfold would agree that there are lessons to be learnt), but it does seem we are now approaching things in a way that will settle this issue, and I'm not sure patients have much to contribute. If the WPI cannot distinguish between CFS and control samples under the conditions of the BWG or Lipkin studies, then it really doesn't matter what we think. If they can, then a whole new round of work will need to begin to understand all these results.

    I think that, because CFS is so often on the edge of science, and sees poor research cloaking itself in the respectability of 'Science' that we can assume all science will be like this. In the case of XMRV, I think we've got the sort of claim which scientific processes are much better suited to assessing.
     
  20. kurt

    kurt Senior Member

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    MOD - please lets discuss XMRV, CFS, and related ideas here, and NOT the ME/CFS patients who are trying to sort this all out, whether we agree with them or not.

    But I do think the original premise is interesting, although I can't see much value coming from that type of set-up debate. When the experts do not agree, are brain-fogged patients likely to sort this out? We all have our opinions and read the same information and some draw different conclusions that border on belief systems. Arguing about beliefs is pointless in my experience. But if we can stick to discussing and trying to understand the data, what the various researchers are saying, that seems more likely to be productive.
     

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