New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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VIP Dx/WPI Combined PCR/Culture Poll for ACTIVE and LATENT Infections

Discussion in 'XMRV Testing, Treatment and Transmission' started by Cort, Dec 2, 2009.

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I Have Taken Both the PCR/Culture Tests From VIP Dx Labs; My Results Were....

  1. I have severe ME/CFS: I tested positive to both the PCR and the Culture tests

    4 vote(s)
    8.5%
  2. I have moderate to severe ME/CFS: I tested positive to both the PCR and the Culture tests

    8 vote(s)
    17.0%
  3. I have mild to moderate ME/CFS: I tested positive to both the PCR and the Culture teststhis

    0 vote(s)
    0.0%
  4. I have severe ME/CFS: I tested positive to the Culture test only

    3 vote(s)
    6.4%
  5. I have moderate to severe ME/CFS: I tested positive to the Culture test only

    7 vote(s)
    14.9%
  6. I have mild to moderate ME/CFS: I tested positive to the Culture test only

    4 vote(s)
    8.5%
  7. I have severe ME/CFS: I tested negative to both the PCR and the Culture tests

    6 vote(s)
    12.8%
  8. I have moderate to severe ME/CFS: I tested negative to both the PCR and the Culture tests

    13 vote(s)
    27.7%
  9. I have mild to moderate ME/CFS: I tested negative to both the PCR and the Culture tests

    2 vote(s)
    4.3%
  1. Large Donner

    Large Donner Senior Member

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    Is this a jump or a scientific statement........

    If its a scientific statement where is the science to back it up two and a half years later?
     
  2. asleep

    asleep Senior Member

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    Don't you know how it works? Lipkin is exempted from having to muck around in petty things like evidence and logic and scientific process. He is a scientific priest and his word is Gospel. Heck, the press even wrote about his superstardom.

    /sarcasm
     
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Exactly .

    "He didn't think the finding would pan out".

    Thats not scientific and open to his natural biased which everyone has . Also insinuates they haven't really looked hard at it and he just made an opinion.

    We haven't heard Montoya's thoughts on it that i have read. Maybe he's under some type of gag order, but thats just a guess??

    I hope someone does open their lab so judy mikovits can persue her research.
     
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  4. Mark

    Mark Former CEO

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    I never heard anything to suggest that they have explained what the cause of that particular result was, but I can only assume that the circumstances of those tests led them to conclude it was highly likely it didn't mean anything important.

    I think it's quite clear that it's absolutely necessary, if you want to believe that result was potentially significant, to believe that both Lipkin and Montoya are ignoring findings that are potentially very significant for the understanding of ME/CFS. I don't personally think that's plausible. They both know a lot more about the circumstances of those tests than any of us, and Dr Montoya is a widely respected ME/CFS physician, so I think it's much more likely that they simply understand why those results almost certainly aren't significant.

    This particular thread is theoretically supposed to be about the VIPdx PCR culture test for XMRV, but if you're talking about the theoretical possibility of other as-yet-undiscovered retroviruses, then fine. I don't know who the people are who you think are 'so against' researching the retroviral hypothesis further, but my personal position is that it's an implausible but conceivable hypothesis that, in an ideal world of unlimited ME/CFS funding, would be worth a look. I remain open to the hypothesis, even though every suitably qualified scientist I've spoken to tells me it's implausible, but the bottom line is that there's no evidence to support that hypothesis (and no, an unpublished result in one part of Lipkin's investigations does not count as evidence) and as one of many, many hypotheses it doesn't rank high in the priorities for ME/CFS research when there are so many much more promising avenues to explore.
     
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  5. Mark

    Mark Former CEO

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    Get this: Montoya did not say, as was claimed, that 'Montoya is saying' that 'there could be other retroviruses...'. That was a jump, and a really big one. That's where I came in.

    Regarding the statement you're referring to, it was a comment about one part of one of the studies Lipkin conducted, where he said that the context led him to conclude that it probably wasn't a significant finding. He could spend two and a half years exploring exactly why it was a false signal, but that might not be the best use of his time. I don't know about you, but in my life there's an abundance of possibilities that would take years of my life to explore - I try to focus my time on the ones that seem most likely to be productive.
     
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  6. Large Donner

    Large Donner Senior Member

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    I see. So this verbatim text below from Lipkin is not a scientific statement then?..........


    Is this (below) what Lipkin has now said, (from your post above) I wasn't aware he had said such.........

    I think this could lead to a misunderstanding as I am not aware that it was proven either way to be a false signal. Am I right in thinking he hasn't explored "why it was a false signal". How would one conclude they were setting out to explore it was a false signal before the exploration itself?
     
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  7. Mark

    Mark Former CEO

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    Yes, everyone has natural biases. But he knows a shitload more about the science involved in his study than any of us do, so his verdict naturally carries a lot more weight. I have no problem with him publicly expressing his opinion which is based on a lifetime of professional experience in this field.

    Given that undeniable reality, I repeat that questioning this particular bit of history is necessarily a conspiracy theory, and you have to believe that Lipkin and Montoya are implicated or silenced by that alleged conspiracy in order to believe that it's in any way significant.

    That's a lot worse than a 'guess', it's just wild speculation. Consider the other, much more likely possibility, that you're barking up the wrong tree and both Montoya and Lipkin had a pretty good idea why they got that particular result, and it wasn't worth pursuing.
     
  8. Large Donner

    Large Donner Senior Member

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    A conspiracy theory? Oh dear.

    Can anyone imagine a conversation that goes,

    First scientist: "Can you tell us how you came to this conclusion".

    Second Scientist: "No, you are a conspiracy theorist".

    As it was stated by asleep in an earlier post science is about science not pronouncements. Lipkin is not above this process. No one is...

    ....is just not good enough.

    He needs to provide evidence either way. If he knows a "shitload" more about the science involved in his study he must have a scientific answer surely? Why isn't he giving us a scientific answer. If he does have a scientific answer it would be so easy to share. That's what scientists do.

    Does he have a scientific answer?
     
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  9. Kati

    Kati Patient in training

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    I am a bit annoyed at this thread resurfacing but I wanted to say this, and I don't remember where I heard it from, but Montoya said in a presentation not to be surprised if there is new herpes viruses discovered in the future.
     
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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A good amount of spin has been used by those wanting to avoid this question.

    As someone has stated in this thread, its about funding and others want funding going in a particular area or direction. That seems to be an agenda taking place. Knock down all other theories and get more potential funding directed towards their particular theory.
     
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  11. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Someone let slip I noticed ( no one here, and not Dr Mikovits), the 85% positive samples taken from people with inflammation (high cytokines) are apparently to SFFV. Now there is no proof, but I saw that, and they know 'people' involved in all this so I see no reason they'd say this as it doesn't benefit anyone, because Dr Lipkin won't reveal the truth and presumably neither will Dr Jose Montoya so we'll never have the answer anyway if things stay as they are.

    I am guessing in defense of those who say one thing and do the other, raw, truth is censored as their scientific careers are at stake if they speak out and their future access to research funding too. Despite Dr Montoya being a high standards ethical doctor and clearly a great person, I imagine he can't reveal anymore to the CFS community than Dr Lipkin can.

    The 2011 Alter/Lipkin paper paper screened out patients not only with active mental health conditions but physical reasons leading to chronic fatigue - all Fukuda CFS studies do this too . Yes, you read that correctly. It ,like all 'CFS' studies of a high profile political nature, the alleged virus hunter extraordinaire's inclusion criteria was designed to fail the retroviral hypothesis or designed to ''miss the plane' for the UK retrovirus discussion, like Elaine did. Naturally, this as never publicized and I see we missed it too.

    To me, the detail over the Dr Montoya samples positive percentage rate of retrovirus in CFS is the deal breaker that potentially makes the 2011 Alter/Lipkin paper, something along the same lines of the PACE trial, if silence is going to remain in abundance as a policy of how to get CFS patients on your side, using patients without inflammation, to define an inflammatory disease. Quite hallucinogenic.

    Sadly, that's the case though if Dr Montoya's work remains blocked from publication and we jump on the happy Dr Lipkin/Hornig train, that AFME seem to enjoy so much. AFME also enjoy PACE and CBT. UK charity, AFME's CEO was a gentleman,a 'Sir' rather high up in the British military, the Navy to be precise, whilst 'Sir' Wessely is the Army. I'm sure, being employed by the MOD and both involved in supporting BPS theory CFS, they've never met each other, and don't share any similar views at all on the co-joined twin of 'CFS/ME'.

    The upshot of this potential American finding (that the 85% of Dr Montoya's inflammatory patients had SFFF antibodies rather than 'censored - we won't tell you' antibodies) would confirm the 2009 SCIENCE paper original finding, absolve Mikovits for the sin of detecting it and make an apparent serological response to recombinant retroviral gamma retrovirus infection urgently worth researching. Something not worth though if it's a 'rumour virus' swept under the carpet.

    So this is the 'story' of XMRV tests, non XMRV, and something else, maybe SFFV, which man created for cancer research reasons, and now, humans are reacting to immunologically, who aren't just lab workers. Think what this means, potentially at least.

    And think how wrong it is, therefore, we only have silence, presented as progress.

    What we need now is Dr Jose Montoya or Dr Lipkin to reveal what the 85% positive (Post 2011 Alter/Lipkin study ) retrovirus was, that was in Dr Montoya's samples, but not in the less severely ill patients who didn't have inflammation.

    If no one can confirm what the retrovirus was either way (that was 85% positive), then we know what the answer is and Dr Lipkin has been asked to do a number on the patients on behalf of someone which was the immediate concern as soon as the premature claim came out that ''ME CFS'' is not associated to cytokine inflammation after 3 years, despite countless people on this forum, having very high levels of cytokines, decades (not before 3 years), but decades after diagnosis who are severely or progressively ill.

    We live in a bizarre twilight world, where the patients know more than the CFS researchers, because the severe patients are the ME patients, and the researchers analyse the wrong people. The original patients with horrible secondary disease states and syndromes (that exclude them from ME CFS research) are the correct people, not a fatigue based diagnosis, influnced by Wessely/Straus/Fukuda. As requested, ME is irradiated and if you do find an association as a pro ME researcher, your work is blocked from publication or simply not even sent back from review because it doesn't fit the political message. All escape routes blocked.

    Political message: Chronic, low grade, low replication retroviruses do not exist in the population. Go away we looked. Post infectious, Psychoneuroimmune stress response is real, it's in your tummy.

    Research Reality: No one in government looked in PWME with inflammation and classic signs of ME (or diseases associated to ME as they were excluded from the Lipkin/Alter study), and when they did find it, they wouldn't do 3 rounds of testing as agreed and spiked the samples before hand. (A general recipe for failure).

    How does one overcome the stale mate? Compromise. Let CFS be CFS, and let inflammatory CFS be ME.
    This isn't good enough for the state, who agreed decades ago,on advice from vaccine companies (one is on record in the MRC files) that ME cannot be left without CFS as its mentor.

    It's all so fascinating to me, in a creepy kind of Orweillian, you're never going to escape from our grasp, and be grateful for us ruining your life, when it was nothing to do with us. Religion didn't teach me that, but what I never betted on, is psychiatry is also a religion.

    Beliefs do not belong in science conclusions. Honest Science should be the orator in concluding full replication studies, not Spin doctors who Gag those trying to salvage something from this daymare and nightmare. aka, a living hell for the patients, who *remember* only believe this....
     
    Last edited: Jan 28, 2016
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  12. asleep

    asleep Senior Member

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    This topic isn't going away. Not until it has been investigated scientifically, transparently, and in good faith. There are plenty of people who can discern science from "science"-like.

    It has nothing to do with devotion to Mikovits (though I do appreciate her endeavors) nor fixation on a particular idea. I'm open to other theories and avenues. I'll take truth and help wherever I can ascertain it. The reason why this topic won't go away is many-fold:
    • Much compelling data still stands and has not been scientifically followed up. This alone is sufficient.
    • No other hypotheses I've seen can hold a candle to retroviral involvement in terms of broad-spectrum explanatory potential, from epidemiology to causative mechanisms to disease variability, etc.
    • The political stakes are immense: e.g. the realization of how frequently retroviral recombination occurs and the implications for vaccines as a retroviral source and delivery mechanism as well as the possibility that government agencies knowingly covered this up. Yes, this not a scientific argument, but context is inescapable (more on this below).

    You've really derailed here, logically. Science is not a courtroom with "verdicts." Nor is it an series of proclamations weighted by purported knowledge, credibility, or credential. That is a political shell game.

    Incidentally, much of the malign I've seen directed toward Mikovits (aside from the spurious, unsubstantiated claims of fraud) is due to her "publicly expressing [her] opinion which is based on a lifetime of professional experience in this field." According to such malign, this is not what scientists do and it justifies her expulsion from the scientific community. There is a clear double standard here.

    A critical distinction further exacerbates this double standard: the nature and directionality of their respective speculation.

    In Mikovits's case, she was extrapolating from and synthesizing existing data. This is creative speculation: developing a more general theory as a means of directing future, intended research. We have words for this: theorizing and hypothesizing. They are integral to the scientific method. This is not to say that such hypothesizing or the data it's based on should be taken at face value. But to railroad a scientist for engaging in these critical aspects is like kneecapping a runner before a race.

    In contrast, Lipkin has taken existing, undisclosed data and speculatively discarded it, with the effect of hampering an entire direction of research. This is destructive speculation. It is one thing for individuals to selectively follow certain leads: no one can investigate them all. But for someone of Lipkin's (foisted) "stature" to speculatively declare an entire avenue dead despite evidence to the contrary sends a chilling warning shot across the bow of open inquiry.

    Which brings up a more general point alluded to above: the disturbing trend in modern society to regard science as magically divorced from human nature and political context. It has been religiously reformulated for common consumption. It has become an oracle of definitive truths, discernable only its favorably ordained ministers.

    As a consequence, this repackaging of science has made it an ideal vehicle for commodification of "truth." Politically or commercially desirable ideas are made saleable to the public by passaging them through "scientific" channels to cleanse them of their human impurities. Questions, concerns, and uncomfortable facts are easily branded as "conspiracy theory" or other such heresy that makes adherents recoil.

    This is exactly what some people are saying.

    Lipkin began to show his true colors when he revealed that he had previously done work on ME that convinced him how shockingly ill patients were, only to say and do absolutely nothing about it for 20-some years before dredging it up as fodder to rally patients to his debunking train. Confirmation came when he oversaw the multicenter "replication" study designed from the ground up to dutifully avoid any chance of replication and then spearheaded its misrepresentation to the public.

    He appears to be Fauci's public relations salesman, playing the part of rockstar scientist to hoodwink patients into complacency. At very best he might possess a glimmer of integrity but made a Faustian bargain, thinking he can deliver help to patients by circumnavigating political third rails.

    I don't know much about Montoya, but I suspect he's learned from the examples of DeFreitas, Mikovits, and other untouchables.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @asleep
    Great points.
    Interesting point you made that i have often wondered about. 20 yrs ago he stated we were so sick from research studies he had seen back then but chose to do nothing about it for 20yrs. His gut study, im not sure what's happened with that but surely a man of his rockstar status wouldn't need patients to raise funds for this research and that he would have big organisations falling all over themselves to donate money to his research.

    I thought it was also very strange that he didnt find any pathogens involved, when cfs experts such as klimas and peterson find viruses reactivating in many of their patients. A so called pathogen hunter can't find infections in a group of people that many other doctors do????

    Maybe lipkin is making mistakes, what makes him sole judge and jury. As you have stated, all he has done is close down avenues of possible further research, which just make it all look more politically motivated than actual science . Believe the science not the scientist i keep hearing but its different with lipkin, its about believing him for some reason .
     
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  14. Daffodil

    Daffodil Senior Member

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    sorry my fog is bad...could someone please tell me when SFFV was found in CFS patients?? this is news to me. shocking news.

    i do think something is brewing under the surface with the specialists because i heard something as well regarding another specialist and some potentially knew discovery(?) with lipkin.

    but i surely dont have any hopes up
     

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