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Any news on Lipkin study?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Bevbh, Apr 27, 2012.

  1. Bob

    Bob

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    I hope I'm not being prematurely negative about it all but I am expecting it to be a negative study...
    Partly to protect myself from disappointment, but also partly because it seems to be so difficult to replicate positive results reliably.
    If the results are anything other than negative, then obviously, that will be very exciting, to say the least.

    I wouldn't be surprised if we had another mixed bag of results... A few positive results from various samples, but not reliably reproducible... And not enough differentiation between patients and controls for it to be a 'positive' study...

    But I would hope that someone like Lipkin might be interested enough to follow up any results, if they find some sequences, to try to find out what all of these novel sequences are, and where they are coming from, and to see if any of them are integrated into human DNA. My understanding is that he has access to the technology to investigate deeper and further than most other researchers. Although it might be the case that he can't do deeper research into any sequences that they might find, until he gets more funding for a further study.

    So even a negative/mixed/ambiguous result for this study, might lead to further research, and a deeper understanding of MLVs, even if they end up not being ME-related.

    Or it might be a completely negative study. Or it might be the case that they find some sequences and decide that they are contamination, and then locate the source of the contamination. That in itself would advance the science, esp if they are novel sequences.

    I really hope that Judy Mikovits has been given all the opportunities, and equipment, and freedom, to carry out her research to her satisfaction, including looking at antibodies.

    Thankfully we now have Rituximab, which at least leaves us something to pin out hopes on, whatever the outcome of the Lipkin study.
     
    taniaaust1 likes this.
  2. Bob

    Bob

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    This is from Simmaron Research's facebook page:
    1. Just a quick NEWS post. while we currently have two major studies underway, and are close to funding a third.

      These are our Completed Investigations

      XMRV and MLV in Chronic Fatigue Syndrome

      Funded by: The National Institutes of Health (NIH)

      While bringing conclusion to the XMRV debate, this study creates well-defined patient cohorts from multiple sites under the leadership of Columbia Univers...ity’s Mailman School of Public Health and the Centers for Infection and Immunity.

      http://www.facebook.com/SimmaronResearch
    They've also posted some info about other research they are involved with, including the CFI pathogen study, and their study on NK cell activity.
     
  3. Esther12

    Esther12 Senior Member

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    I wonder if they'll have to take that down, as it pretty much says that the result is negative in advance of the release of the results. Thanks for posting it Bob.
     
  4. Bob

    Bob

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    Peterson said words to the same effect at the iiME conference. He seems eager to get the results published.
     
  5. Esther12

    Esther12 Senior Member

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    I see - I hadn't heard that. Were there many people at IiME who still thought XMRV was the cause/associated with CFS, or not so much any more? How did the news that Lipkin's study was negative go down?
     
  6. Bob

    Bob

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    I wasn't there so it's third-hand information, but I heard that Peterson was not explicit about what study he was talking about, or exactly what the results are, so people were not entirely sure what he meant.

    Because the focus of the conference was on the immune system, I think the buzz was more related to Rituximab this year, rather than XMRV.
     
  7. Daffodil

    Daffodil Senior Member

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    Bob...after a few weeks on AZT, this amazing thing started to happen to my brain - something that has never happened since. first, an intense headache...then it was as if the red sea was parting...my brain was opening up..clearing...i cannot describe how it felt after 17 yrs of severe fog. sadly, this improvement was accompanied by intense chest pain. it was weird. the pain was so intense i had to reduce the AZT dose by 100 mg and then the chest pain would stop but my brain would fog up again.. i increased and decreased this way for a few months until increasing stopped helping.

    the idea that lipkin might be the final word on a viral cause of this, aside from a few CFS doctors who are still involved in research, is so terrifying.
     
    xrayspex likes this.
  8. Esther12

    Esther12 Senior Member

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    Ta Bob. I thought you might have been judging the response of the room first-hand!
     
  9. Bob

    Bob

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    Oh what a major dissapointment that you couldn't keep those doses up, Daffodil.
    I totally relate to your analogy of the parting on the red sea...
    That must have been quite an experience!
    I think we all look forward to the day when that might happen, don't we!

    AZT obviously isn't quite the right drug for you. Or maybe you'd do well on a combo. I wish they would do some research with various antiretrovirals. Even if viruses aren't involved, they might have a moderating effect on the immune system.

    I don't know if you've been following Dr Snyderman's personal results that he's seen on antiretrovirals, but he's seen improvements (but maybe for cancer rather than CFS - I can't remember), and he's also being doing blood tests (I can't remember which ones - but it's all on Dr Deckoff-Jones' blog) which have changed in correlation to his symptoms as he's taken the meds. The results are very interesting.

    I'm optimistic that we will get the answers whatever the outcome of Lipkin's study.
    My hunch is that there are probably many retrovirologists who are working away behind the scenes to find out the answers to MLVs.
    If there are novel sequences floating around all over the place, then there are going to be scientists who want to be the first to find a novel virus... Retrovirology is a far bigger field than ME, and there are loads of retrovirologists around the world, with good funding.
    So I can't see the research stopping.

    And if there are any unanswered questions after the Lipkin study, such as questions about antibody results, or about novel sequences, then i'm sure that someone somewhere will want to follow it up.
     
    xrayspex, taniaaust1 and currer like this.
  10. currer

    currer Senior Member

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    Hi.
    I was at the Invest in Me Conference, although I was unwell immediately prior to the day and so only got there after 12 noon, and was not able to take notes.

    The focus of this year's conference was on the immune system, autoimmunity and the research that is going ahead to investigate and extend the initial findings of Fluge and Mella on rituximab, and why it may work in ME.

    None of the speakers had an interest in retrovirology, so this subject was not mentioned.

    Dr Peterson was one of the speakers and gave a very rapid overview of the current research in the US, a presentation which stated that the results of the NIH study would be released on the 30th June "and that should draw a line under xmrv".
    Now as I remember it, this study appeared, from his remarks, to be a much smaller study than the study we expect Lipkins to be, he did not introduce it as "the Lipkin study" and so it was only in retrospect, once he had moved on to other subjects that I and other people with me realised he must have meant the study we know as Lipkins.
    As the date which Dr Peterson confidently announced for the results has now been publicly denied, I dont know what to think, or what to make of my other interpretations of what I remember him as saying on the day.

    In fact his talk did not create any stir because I think others in the audience also had the same problem of following his very rapid presentation. I think the best thing to do is wait and see what eventually transpires about the Lipkin study as what I remember Peterson as saying about it conflicts with other reports of the study design and I think there must have been some confusion in Petersons presentation. I have checked with other people who were there and they cannot clarify what was meant either.
    Invest in ME do refer to the (now repudiated) date of the end of June in their conference summary of what Peterson had to say.
    http://www.investinme.org/IiME Conference 2012/IIMEC7 Conference 2012 Conference Report.htm
     
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  11. currer

    currer Senior Member

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    Bob likes this.
  12. Lynne B

    Lynne B Senior Member

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    Thanks, Currer, That Snyderman blog is extremely interesting—gives me hope.
     
  13. Esther12

    Esther12 Senior Member

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    Ta for the run-down Currer.
     
  14. ukxmrv

    ukxmrv Senior Member

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    Thanks Currer. for letting us know about the conference.

    For anyone who hasn't been it's hard to describe how intense and uncomfortable it can be for a patient.

    I've been to most of the IiME conferences and the venue is very difficult with steps up each side of the hall. The lectures keep coming with little breaks. During the breaks if one is slow it's hard to get to the loos or get a drink. All the conferences I have been too have been very packed. People can only move around a little. The aisles and back of the hall can be full of people needing to lie down. It's being recorded so moving around on that side is discouraged.

    We sit at the conferences all crammed together. There is no space to put a pad and paper for notes. If two people try in consecutive seats it becomes a battle for space.

    Then there is the flow of information and slides. It just keeps coming and coming. The speakers talk quickly. Some have english as a second language. Question times are limited and it can be hard to get the mike to ask a question or even the strength to write one down.

    All of this is no criticsm of IiME. I'm glad that they include so much and have such great speakers. If a speaker doesn't interest me I try to take a break but that can only really be done around their formal breaks as due to the seating arrangements it's hard to move aroud. The seats on the side get taken first by people who want to be close to the loos etc.

    London is a very hard city to find disabled friendly large venues. Most organisations want huge fees upfront for conferecnes. IiME do a wonderful job of organising. It's really just 2 parents of disabled children and helpers.
     
  15. Daffodil

    Daffodil Senior Member

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    Bob.....but Lipkin didn't even find MLV sequences, right? It sounds like it was altogether negative...
     
  16. Bob

    Bob

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    I don't know, Daffodil... It's too early to tell, based on what Peterson has said...
    Based on what he's said, we don't know if they might have found some sequences, but with no difference between patient and control samples.
     
  17. Daffodil

    Daffodil Senior Member

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    Geez. if it wasn't for GcMAF, I would be suicidal again with this negative study information. GcMAF is making my life tolerable for the moment.
     
  18. leela

    leela Slow But Hopeful

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    I've just been skimming this thread, so please excuse me if I've missed alot...
    but the comments "bringing conclusion to the XMRV debate" and "draw a line under"
    don't necessarily translate to "rule out" to me. Draw a line through, that's a no. Bringing conclusion to the debate
    could be a yea or a nay. Drawing a line under is for emphasis. I read it as possibly a subset in which MLVs can be a factor. Or not. ;)
     
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  19. Bob

    Bob

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    Yes, we're all just guessing leela based on what Dr Peterson said. No one knows the results.
     
  20. Daffodil

    Daffodil Senior Member

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    i dont even believe in true autoimmunity. b cell depletion helps cuz something infectious is in the b cells and we cannot find it. this is a disease where something is using cell division to replicate. thats as plain as the nose on my face/which sadly. is pretty plain LOL
     

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