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XMRV Replication Studies

Discussion in 'XMRV Research and Replication Studies' started by Cort, Dec 5, 2009.

  1. Koan

    Koan Be the change.

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    Me, too, Martlet.

    I do find the commitment to open-minded curiosity helps me to settle again and not perseverate, don't you. It's a big help.

    I incline, of course, I incline... :tongue:

    I just try to remember to seek balance :yinyang:

    because otherwise I feel like this :D all the time.

    Instead of like this

    :hug:
  2. kurt

    kurt Senior Member

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    Well said Koan. I suspect many people here do not realize how long this process will last. Maintaining objectivity will be hard no matter where one sits on the issues. Building scientific consensus takes years. And no matter how good initial studies look, in this type of science anything is possible. Most retroviral hunts have ended up being a bust, often due to HERV contamination in the subject population. That is a real risk with XMRV studies given that HHV is high in CFS, HHV is known to activate HERVs, HERV activation is high in CFS (much higher than controls), and HERVs are known to cross-react with MuLV antibodies. Therefore, while I am trying to stay objective, that objectivity is informed by the reality of the risk in this type of finding. In the long run the individual studies will be absorbed into the group of studies that will be evaluated over time as a consensus emerges. So no individual study will carry all the weight of having to prove XMRV causes or is involved in CFS. What I think we need to attach ourselves to, my lesson being learned here, is that CFS is a very, very maligned disease and we need to change that, regardless of how XMRV turns out. Ironically, while studying XMRV has raised doubts in my mind, it has helped me realize what must be done for CFS to become socially accepted enough to get the level of funding needed for the complex type of research that will ultimately solve this illness.

    The Bateman presentation was optimistic but also realistic, and the unpublished study described at the end was amazing. The Light study could be another significant milestone in CFS research. If we can prove PEM unequivocally through that type of pain/fatigue receptor stress test, the CDC and SSA and others will have yet another reason to change their ridiculous position that 'no tests prove CFS.'
  3. shrewsbury

    shrewsbury member

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    oh - I love the chance to learn a new word!

    perseveration [pɜːˌsɛvəˈreɪʃən]
    n Psychol
    1. (Psychology) the tendency for an impression, idea, or feeling to dissipate only slowly and to recur during subsequent experiences
    2. (Psychology) an inability to change one's method of working when transferred from one task to another

    1. Psychology
    a. Uncontrollable repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder.
    b. The tendency to continue or repeat an act or activity after the cessation of the original stimulus.

    I tend to tend to :sofa: as well (big grin)

    ah - the maestra of the emoticons. Whodathunk they could be so exquisitely expressive?

    Me - I have my hopes that we will all be cured, or at less get treatment so that we can re-engage in most aspects of life now impossible. And soon! But mostly don't hang on to them. And mostly don't have pre-conceived ideas about how that is going to come about. Tricky ground.

    :hug:
  4. Navid

    Navid Senior Member

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    Me - I have my hopes that we will all be cured, or at less get treatment so that we can re-engage in most aspects of life now impossible. And soon! But mostly don't hang on to them. And mostly don't have pre-conceived ideas about how that is going to come about. Tricky ground.



    Please, please share how you manage to do that. I want to be able to do that too!!!!

    Thanks, Lisag

    :yinyang::yinyang:
  5. Lily

    Lily *Believe*

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    I know several older people including one 'elderly' man who have recovered from decades of severe CFS. It is possible, never give up! You just have to correctly identify and treat your personal pathologies. We do seem to have a testing bottleneck, too expensive for ordinary PWC to get all the tests that would be required to uncover our personal version of CFS. But I think in time that will be solved somehow.
  6. Gerwyn

    Gerwyn Guest

    Just two points really----no scientist would say that they were absolutely certain of their results, if they were in conflict, without a known positive blood control which they didn,t have.They made a number of assumptions about XMRV without testing any of them.They were also Chronic fatigue patients (as per who classification) That is a bit like looking for fish in a field and making apple pie without adding the apples and wondering why it tastes different from expected.
  7. Gerwyn

    Gerwyn Guest

    Sorry I forgot-----I,d bet that the centres having trouble are not using the canadian criterea or the WPI methodology or both. Frozen tissue or stored blood samples would not help much either!
  8. starryeyes

    starryeyes Senior Member

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    It's called "Tobacco Science".
  9. Gerwyn

    Gerwyn Guest

    all pain is a perception that does not make it false----I,m a psychologist and we tend to take a dim view of psychiatrists anyway----They seem to pay no attention to science whatsoever and base everything on wholly subjective opinion
  10. starryeyes

    starryeyes Senior Member

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    Interesting Gerwyn. Thanks for that insight.
  11. Martlet

    Martlet Senior Member

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    When we lived in Germany, we were next-door neighbors to a leading psychiatrist before I fell ill, a couple of years later. I had a fall on the stairs and while waiting for the ambulance, this doctor and his pediatrician wife kept me company. The pediatrician had examined me and then I just lay there, in pain but laughing and cracking jokes. "I feel useless," said our psychiatrist friend, "although I could psychoanalyse you. Do you always laugh when in pain?"

    I got my own back a few weeks later when he told me something about his teenage daughter. I leaned forward, wearing a very serious expression and asked, "And how do you feel about that?" He cracked up laughing. Now there was a psychiatrist I could happily see professionally. One who did not take himself too seriously. But they are a rare, rare breed, I think.
  12. omerbasket

    omerbasket Senior Member

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    Do you think it's only regional? Because two people in this forum alone have been found positive for XMRV culture. It seems that there are some problems with the PCR tests, even for WPI (you can see in the polls in this forum that there are much more people there who have been found positive for XMRV in the culture test than in the PCR test. If I remember and understand correctly, IC had only done a PCR test, and even than did not follow the original study's PCR test).

    In these polls here, there are about 50% who had been found positive for XMRV. Antibody test is not yet availbe and I think it's more likely that the FDA approved test, whenever it comes out, would be able to find that more people who has been diagnosed as XMRV negative are actually XMRV positive, than it would be discovered that more people who had been found XMRV positive are actually XMRV negative. Because... I think it's easier to miss a virus even if its there, than to find it even if it's not there.

    Anyway, the WPI is a non-profit institute, which has been founded by the parents of and CFS/ME patient. It's much easier for me to believe that they have no interest in publishing a study that would be, eventually, found to be wrong. When I read about a study performed by "Professor" Simon Wessely, and was published somehow, it seems much sooner than al the other studies, I tend to trust the WPI's study much much more.
  13. Mark

    Mark Acting CEO

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    Isn't it interesting that the fact that WPI is a non-profit set up by the parents of a CFS sufferer actually seems to make many in the scientific community more sceptical of its findings rather than less, whereas for us, the opposite applies? When I've read some of the suspicious comments about WPI from scientists, it's really been quite illuminating as to how they think. Many scientists inside the system appear to have a spectacularly stupid attitude to politics, seeing it as something they aren't interested in and want to avoid, and just stick to the science, the facts, in an objective way. What such people seem to completely fail to appreciate is the implications of the political context they operate in; the need for funding, and the fact that the availability of that funding represents a political control of their research agenda. So they can be as objective as they like, and try to hold fast to the ideal that Science is rational and objective and doesn't take sides and will win out in the end - but that ideal is inadequate to our age because the research agenda and the funding is politically controlled. They don't seem to understand political criticism of research such as the Imperial College study because they operate inside this bubble where (they believe) everything is just determined by the facts - an attitude that is so easily manipulated by media-savvy scientists with a political agenda.

    It must be very hard for them to understand that while what they do as individuals may be objective and scientific, their position within the system means that the general population increasingly doesn't trust them as a whole and doesn't trust 'Science' any more. Until the scientific community can mobilise itself to fight back and regain its academic freedom, I think it's fair to say that our society's Science as a whole is itself no longer scientific but political. If anybody doubts this proposition, then they would have to explain to me the implications of having privately-funded scientific studies which are not accepted for publication - and never see the light of day - if they produce "the wrong answer". I've been told by several people that this is a commonplace for researchers, and pondering the implications of this tells you everything you need to know about modern 'science'.

    So I trust the WPI a whole lot more than Imperial College or whoever you care to name. The individuals involved in public research are all brilliant and mostly have great integrity I'm sure, but the institutional infrastructure is rotten to the core. If we continue along this trajectory, the only function left for traditional academics will be to rubber-stamp genuine privately-funded research findings - an opportunity they wll receive as and when their political masters deem those research findings acceptable.
  14. spit

    spit Senior Member

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    Yep. Theoretically, PCR is a very powerful tool. But lots of people -- even scientists, sometimes -- seem to think that if something is very sensitive and very specific for analyzing a sample, that that's the end of the story. It's not. You have to make sure that your samples are a good representation, for one -- if the thing you're looking for hides out in a tissue you didn't collect, then you're not going to find it with even the best PCR assay. Just as a single example. There are plenty of other potential problems that make it a lot more tricky than providing a simple yes or no, particularly when the questions around this virus are things we don't fully even know how to ask correctly yet.

    Culture has some problems, too, as does everything, but WPI tested in multiple ways -- PCR, culture, even sequencing of some samples. That gives me a pretty high level of confidence in their work -- they found something, at least sometimes, across multiple different methods and across three different labs. They may have missed some positives, they may have gotten some false ones, but overall they got enough solid result with enough practical confidence-building measures to say that they definitely found something noteworthy in the samples they had. If their work is really wrong, it's probably not going to be because their tests were all invalid.

    The IC study, by contrast, used one testing method, which was different from any at WPI, that they really didn't validate well beyond "can pick up the virus in a sample that looks very little like an actual sample", got totally different numbers, didn't bother to go back and make sure that wasn't their testing method or handling technique, and then came out with very strongly worded statements (this is the part that is inexcusable to me, as a scientist. It's fine to run with the study you have, and it's fine to take your data at face value, those are good things -- but to come out with this study and act as though it's all solid and clear is crap. There's coming across as confident, and then there's coming across as arrogant. These folks managed the latter.)

    Really, Wessely's involvement is neither here nor there to me as far as the science goes, but it's also fair to say that if they wanted people already involved in this stuff to trust their study, they'd have been better off without him touching any of it. Especially if they weren't going to go some extra mile to dot their t's and cross their i's as far as methods go.

    I don't think we should entirely dismiss their results. I think we should be critical of both studies, and willing to accept that either set of data may be the stronger reflection of reality in the end. But I also think that the WPI study is far, far superior in terms of thoughtful design and careful confirmation of results. It's going to take a lot more than this single, rather problematic UK study to knock it down, in my mind.
  15. Esther12

    Esther12 Senior Member

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    My own uninformed oppinion is that there seems to be some trouble with our ability to detect XMRV with PCR which is not yet properly understood. That could explain the varying rates for prostate cancer and CFS. From what I've read though, this isn't seen as terribly likely within the scientific community. I don't know if this is because they're better informed about the way PCR opperates, and so have good reason for having such faith in their techniques, or if it's because, as Mark mentioned, scientists can slip into a rather uncritical appreciation of certain aspects of science. This can be helpful, as allowing researchers to confidently make certain assumptions allows them to progress with their work, and when evidence emerges which contradicts these assumptions, they can be changed. However it can lead to researchers being slow to recognise the evidence is contradicting their assumptions, but I have no good reason to believe this is what's happening now. Hopefully we'll know soon enough.

    I think the WPI are trying to help, and they seem really sure of their data... but they could well be wrong. Their piece in Science looked very thorough, and it would be very strange if it didn't lead on to somthing, but these things can happen. I'm sure we're all really hungry for news of further replication attempts.

    I've just seen Spit's post, and I agree with that. It's also more clearly expressed than I'd have managed.
  16. Mark

    Mark Acting CEO

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    Absolutely. And wasn't it scary how successfully they managed to play the PR game and make everything seem the exact opposite of what it was? The study itself said nothing 'unscientific' in itself - but their public comments about the meaning of the study were absolutely wild speculation and completely unjustifiable. Yet much of the scientific community seems to have judged them on the contents of the study alone. They were even able to successfully level accusations at the WPI of having whipped patients up into a frenzy (when actually the WPI themselves downplayed the implications from the beginning and the IC researchers are the ones making statements that go beyond what they've actually shown). They were able to accuse the WPI of failing to be '1000% sure' of their results before publishing, while at the same time rushing to publication with the world's quickest failure to find anything whatsoever. The hypocrisy was just breathtaking for me, and frankly it's terrifying the uncritical way it was reported, and the power the study seems to have had (being a factor in the Spanish study's decision to give up, for example).

    I haven't ever followed events in the ME/CFS world as closely as I have been doing recently, and the implications of the way the IC study was conducted and released are devastating as far as I'm concerned. Whether the IC study turns out to be accurate and correct or not, the circumstances around it are just so revealing, the political game being played is so blatant, that it throws doubt on issues I never previously took seriously. It was effectively a radicalising force for me.

    For example: mobile phone radiation. I've followed a bit of the history of that, and I was somewhat undecided about it until now. The history as I recall it: scandinavian researchers found convincing evidence of a link between mobile phone use and brain tumours (tumours disproprtionately on the same side of the head as the ear used to listen to calls - ie left-handed people had the tumours on the left side of the brain). British researchers - including guess who yes Simon Wessely - produce lots of research that fails to find any such effect; TV documentaries explain why it's quite impossible for mobile phone radiation to be harmful. Several years later, the scandinavians are back with a whole load more studies that prove the dangers. British researchers again conduct a series of studies to prove the scandinavians were wrong. Then comes the coup de grace - a "study of studies" which looks at all the different studies and finds the evidence "inconclusive". So all you need in order to suppress something - whether it be water-poisoning at Camelford, harmful effects of technology or chemicals, the reality of GWS or CFS - all you need to do, whenever some scientist comes up with some evidence, is to produce an equal and opposite set of studies that fail to confirm the evidence, or ideally show the exact opposite so that when it's all averaged out in a 'study of studies' the answer ends up at a big fat zero. Finally, you can even go so far as to set the same scientist to work on every area you want to discredit, and he'll be happy to keep coming up with new psychological theories to explain why all the people who thought they were ill are actually just imagining it. And you can even get away with that, with no critical press whatsoever.

    So what else is out there that we think is dubious and has actually just been covered up? Imperial College and SW have now managed to convert me to taking the anti-vaccine lobby very seriously indeed, because if this is how the official bodies operate, anything is possible.
  17. Mithriel

    Mithriel Senior Member

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    Scientists are in denial about how much politics and profit have entered the field. It has been gaining ground for the past twenty years but conditions now are very different form the way they were not so long ago.

    So scientists don't WANT to believe the IP study was compromised. Also Imperial College has a very good reputation for solid science, though one scientist I know thought the study was so bad he is worried about the reputation of IP - if it becomes tainted his PhD from there will lose much of its cache.

    When I was a biologist, if I did not find something other people had, I would at least repeat the experiment and then try looking in a different way. Finding evidence carries information, finding nothing does not. The fact that normal controls had XMRV in experiments in different labs would have made me very wary about a totally negative result. Eventually, if experiment after experiment were negative I might venture to say that my work could not find the organism. I might even discuss why I thought it was happening. The statements made by IP were opinion based on arrogance and were not scientific statements.

    Spit is completely correct. This was not science, it is not how science is done. This is politics. A paper could have been rushed out in this way if they had found confirmation of the WPI results, once you find it you find it, but a negative result should have been pored over and redone.

    It is not blind optimism or impatience or excitement that makes me believe the WPI over the IP study. The WPI carried out science as I have known it and loved it for the beauty of how it explains the world.

    XMRV may well turn out to be of little concern to CFS, it might even be an artifact and the WPI are misinterpreting their results, but the IP study did not give us any information beyond the political. We now know our enemy, they have shown their hand. We know nothing extra about XMRV.

    Mithriel
  18. natasa778

    natasa778 Senior Member

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    Mark, there is a great great article on this very topic here: http://adventuresinautism.blogspot.com/2009/12/reposting-unscientific-scientists.html

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