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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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UPDATE: BLOOD WORKING GROUP

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, Aug 4, 2011.

  1. Francelle

    Francelle Senior Member

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    There has been talk of M.E. for many reasons being caused by a retrovirus since the '80's - even before DeFreitis's work, so if not XMRV then what other retrovirus is even on the horizon? It's a huge puzzle!
     
  2. VillageLife

    VillageLife Senior Member

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    It's a Hard day - spare a thought for all those who have xmrv positive status, really hard day for them.
     
    WillowJ likes this.
  3. Esther12

    Esther12 Senior Member

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    I've been wanting to hear Silverman's views on all the contamination stuff.

    I've not been holding out much hope for XMRV for a while, and no longer been following the science closely, but it's looking increasingly bad to me.

    It's quite normal to a journal to focus upon a particular topic for an issue, and there's no reason to think there's anything underhand about that. While 'CFS' has been treated badly by a lot of researchers in the past, I don't think it makes any sense to believe that if the WPI were able to predictably detect XMRV in samples from CFS patients at a dramatically greater rate than controls, when under blinded conditions, that this could be covered up.

    It will be interesting to see what the WPI, Mikovits or the Ruscetti's have to say about tomorrow's results.
     
  4. Esther12

    Esther12 Senior Member

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    Definitely. I've been increasingly sceptical about XMRV for some time... but if this is the point where researchers previously supportive of XMRV/CFS announce that they were mistaken, I know how difficult, upsetting and scary it's going to be for a lot of people. Best wishes sent out to all - I hope everyone more personally affected takes some time to go easy on themselves, and has people they can turn to.

    While I think it's increasingly unlikely - there is also a chance that it could be announced that it's now likely many of us are infected with a retrovirus... bizarrely, this could seem like good news given the current way 'CFS' is treated, particularly in the UK.

    Even less likely again... we could have another confusing result, which fails to show one thing or the other.

    I had some strange health news about six months ago (which has since turned out to be wrong - medicine sucks), and it really knocked my confidence away for a bit and left me feeling pretty confused and unsettled, and it made me think about those with possibly inaccurate positive-XMRV results. Everyone should try to bear that in mind how personally involved we all are, and try to be nice to each other and themselves if tomorrow does bring big news. Good luck everyone.
     
    justy and Bob like this.
  5. Bob

    Bob

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    Thank you Esther... Nice thoughts there... I think it might be helpful if we all take a moment to consider how today might affect people personally.
     
    WillowJ likes this.
  6. Bob

    Bob

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    Thank you Jemal.

    This study seems very familiar... Hadn't they already done this study, or something very familiar?
    I seem to remember that they already knew that two of the integration sites were identical to those in the cell line.
    Or is there a significant difference between the two papers? This one investigates SNPs, but I seem to remember the other one investigated the position of the integration sites.
    (I've got an appalling memory for details.)
     
  7. eric_s

    eric_s Senior Member

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    Well ok, maybe that's the American way and maybe it's the best way, but in my opinion, if you say things like "It's a grand slam", "the politics will go away shortly", "it's the virus, stupid", and many such things, you should better be right. If XMRV were nothing and bottom line the entire XMRV story would still have helped us nevertheless, then ok, i would still be glad they did what they did, but it would be a rather strange way of doing things, in my view.
     
  8. Bob

    Bob

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    I think we are being premature to write off XMRV today.
    I don't know about the BWG results, but I think we are expecting news about positive XMRV studies today.
    I expect it will be a mixed message today, with mixed results, and as usual we'll be none the wiser!
     
    SOC likes this.
  9. eric_s

    eric_s Senior Member

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    I think you are right. But that period where we always get mixed, inconclusive results must come to an end rather sooner than later. We have been waiting for long enough... BWG will be important though. If the WPI or Lo lab have not been able to pick out the cases it won't be over yet, as far as i'm concerned, but i think they will need good arguments then.
     
  10. Bob

    Bob

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    But if we continue to get mixed results, then there's nothing we can do about it... Except wait... However frustrating that is.
     
  11. alex3619

    alex3619 Senior Member

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    Hi, since the WPI was involved in the BWG study, if they nailed the results then association is almost certain, if they get 50/50 then they have failed to show association. Inconclusive results will be hard to understand - it will mean something is wrong somewhere, but we will then be back to arguing about what is wrong. If the BWG does have definite results I will probably have to change my signature. Bye, Alex
     
  12. Nina

    Nina Senior Member

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    That would be applicable if the WPI had done this in their own lab, collected and prepared their own samples and chose a trusted person to blind and unblind the samples. AFAIK that's not what has been happening in the BWG Phase 3. If results are inconclusive or even if nobody was able to find any XMRV, what does that mean, really? I'll believe it when the WPI isn't able to separate patients from controls in an experiment designed and conducted entirely by themselves. The BWG is not that experiment.

    Eric, you know I don't share your views on the WPI issue and how they have handled this. But just for a minute, think about where we would be now if everyone involved hadn't made a big deal out of it and it had all just been business as usual. Do you think there would be a $10m fund now? Do you think there would be half as many researchers interested in "CFS" now? I honestly don't. So if XMRV/HGRVs don't pan out, and I'm still not convinced that will happen, I won't blame the WPI for anything. They did what they had to do, and they are still the most promising research and treatment center in the world. They are the only ones that really "get" M.E. They are the ones advocating for dropping the ridiculous name. They are the ones lobbying for political support to build the treatment center that nobody else wanted to build for us.

    I know everyone is over the moon with the new CFI, but they have yet to gain my trust, and so far they're not doing a great job I have to say.

    To me, if WPI will get thrown under the bus, it's looking very grim indeed.
     
    WillowJ likes this.
  13. eric_s

    eric_s Senior Member

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    What we can and should do, in my opinion, is to do whatever we can so that there will be more and better research. And faster, if possible. I guess this means raising funds and trying to improve our connections to doctors, researchers, politicians and people in government agencies. If XMRV were to turn out to be a dead end we would still need this, only then they would have to look elsewhere.
     
  14. eric_s

    eric_s Senior Member

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    I agree with what you've said in the first paragraph and i have been thinking about this a lot, ever since i've heard about the BWG and the Lipkin study. In the case of negative BWG results i will also want to hear the WPI's position. There is nothing keeping them from conducting the experiment you have proposed and in fact i hope they will do that (and we should help them with it), if the BWG results are negative, but they (the WPI) are convinced they are right about HGRVs.

    It's a tough question and i think it's probably impossible to know how things would have went if they had had a different form of communicating, etc. Like i've said in another post, if bottom line it has brought more interest, more funding, more recognition, then they have helped us, albeit in a rather special way ;-P

    I think so far the CFI has done a very good job, because they seem to have recruited excellent people and have developped a very comprehensive plan. What's still lacking are concrete scientific results, of course, and this is what we need in the end. But just as you can say the WPI has brought a lot of attention to ME/CFS one could say that the CFI has given a very good example and i hope other similar funds or philantropists will follow and other organisations or efforts will copy the seriousness and comprehensiveness of the CFI's approach.
     
    WillowJ likes this.
  15. sosumi

    sosumi

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    So, if negative, is Cort gloating when he says "big news?" Big news for most patients here would be a positive BWG result. A negative result would be nothing new. I would hope Cort is responsible enough not to gloat. Or is it a simple case of "I know something you don't know?"
     
    heapsreal likes this.
  16. currer

    currer Senior Member

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    I believe in MLVs as a cause of disease. I think the supporting science that I have read over the past year amply shows this to be possible. I have watched with dismay as specious and tendentious negative "research" is published with great fanfare while other research is suppressed.

    WE HAVE ALL WATCHED THIS AS IT HAPPENED.

    I dont know what will happen but I think the WPI has come up with retroviral findings that are not wanted.
    How many times has this happened with our disease? Do they really believe we will fall for it a third time?

    The publicity here is being heavily managed. But the internet gives us freedom. Lets use this freedom to think for ourselves and not allow ourselves to be manipulated.
     
  17. Esther12

    Esther12 Senior Member

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    Results from the BWG will be big news whatever they are, as it's the most extensively the WPI will have been tested under blinded conditions.

    If the WPI isn't able to distinguish between CFS and control samples under genuinely blinded conditions, then that fatally undermines their work. If they are able to, then it doesn't matter how much work indicates contamination, we can be confident that they are on to something.

    The more objective nature of virology allows us to take a more simplistic approach to this than we can with a lot of CFS research.
     
  18. Jemal

    Jemal Senior Member

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  19. FancyMyBlood

    FancyMyBlood Senior Member

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  20. Esther12

    Esther12 Senior Member

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    Sounds bad for the WPI, which is what I think we were expecting.

    I've worn myself out doing a little pilates, so might go and rest up rather than try to keep up with news here. Good luck everyone, I hope you're all being good to yourselves.
     

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