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German study finds xmrv

Discussion in 'XMRV Research and Replication Studies' started by bel canto, May 18, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Mark, I stand corrected. I just can't keep up with all this stuff. So I have vague recollections of the claims. Between all of us, maybe we can put one brain together, although, seems some of you are doing much better than me of late. Of course, I have lots else to keep up with, I am still working, sort of.

    Maybe they could now say it is in Germany and not UK, or not in Holland. (Why are folks from Holland not called Hollanders?) Oh, maybe it is only in Germany, think that might be it. That's it, that's the ticket. ;-)

    Tina
  2. alex3619

    alex3619 Senior Member

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    Hi Mark,

    People like the status quo - they resist change if they are not expecting it. This is going to come as a shock to many in the general public when it reaches the point that it can no longer be ignored. I have also used the "global pandemic" claim. This is way bigger than HIV in the West (not Africa though, and possibly not in much of Asia), and much much bigger than swine flu. I think it may even be bigger than the 1918 Spanish flu that killed so many millions. It also represents a medical bungle that is many magnitudes bigger than the Thalidamide disaster, largely because of its scale and the duration of the medical ignorance. I wonder what would happen if we started comparing this to Thalidamide in media contact? We would have to do some research into the history of Thalidamide first, to be sure we kept our facts straight. I have made this suggestion before several years ago, but nobody responded to it. Maybe the time is right again - it will certainly attract media attention if it is done right, but I agree that we are at risk of being labelled "crazies" which might even garner support for the biopsychosocial movement.

    The fact that the German researchers first claimed not to find it, and now has a study that does, shows that science is alive and well in Europe. I really liked the quote someone made that comes from Japan: "Fall down six times, get up seven."

    There is also the problem that while people don't always have trust in authorities, they tend to believe them anyway. So long as governments are using carefull spin to keep a lid on this it will remain quiet and off people's radar - for some time yet probably.

    Having said that, while it looks very likely it is correct, this whole research could come crashing down with one really good contrary study, or several lesser ones. The way I see it, XMRV either is or is not causal, and either is or is not leading to a global pandemic. The issue is that we need to find out which explanations are correct, when there are vested interests on both sides of the debate trying to push their views on the public.

    This arguement is heading more into advocacy than the German study stuff, and I do wonder if it would be better dealt with on a different thread.

    The biopsychosocial researchers are struggling to keep their theory alive in the scientific community. Their own school buy it, the UK government and its departments have bought it, but having these issues in the scope of many new scientists is bound to make them look more and more out of touch with the research. They only got away with it this long because most scientists are bound up in their own work, and because most doctors are way too busy to keep up to date with research that is all over the place and would have to be tracked down. And as for the general public ... well, everyone gets tired don't they? I really liked the recent Nevada Newsmakers episode (18 May) when the presenter was brought to task for calling CFS chronic fatigue, which ignores the many hundreds of other problems.

    Best wishes,
    Alex


  3. Mark

    Mark Acting CEO

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    :tear::tear::tear:

    I wouldn't put it past them Tina. I feel sure they're going to have to come out with some truly ludicrous statements for the scrapbook before this is all over. :D
  4. Mark

    Mark Acting CEO

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    Assuming we do reach that point, then because of the way it's played it should make a lot of people really sit up and think about a lot of things. I think of all the people I've told about this, and if it comes out in the press 2 years later they're going to want to know how come I knew 2 years before they did. Some deep questions have to be asked at that point.

    Many magnitudes bigger, yes. Too big to contemplate. But they will make the case that XMRV was only discovered in 2006 and say therefore that science wasn't ready to find this before then. They will get away with all these things I'm afraid, in the end. But it will bring changes.

    Thalidomide, I don't think that's going to play I'm afraid. It's a bit of a tired comparison in that it's been used so many times before, and none of those cases have been proven. I've seen them on Bad Science jokingly bracing themselves for Thalidomide comparisons that never came - it's a cliche now. Still, always worth keeping Thalidomide in people's minds I think, it's an example worth remembering. But people do still find it much easier to wash their hands, go back to the TV, and sit back and carry on with their lives...sadly. Only solid science will change anything.

    They won't budge an inch until the science absolutely forces them to. They will justify this to themselves in terms of an adversarial model of science. They are doing their bit by defending one side of the argument as strongly as they can. The onus is on the other side to prove their case, as they see it. And yeah, very sad how people absolutely don't trust their authorities, but then believe everything they say. Very weird that...

    Totally disagree that contrary studies can bring this research crashing down. Wessely et al demonstrated that negative studies can reduce the number of follow-up studies that take place. But negative studies will continue to mean nothing. What would be a problem is if there aren't any positive studies by the end of this year. We still do need that replication study. But for me, I just don't see the theory where another independent lab finds the same sort of association, and then it turns out to be wrong. Can't see how that happens, frankly. First, you'd still have to explain those results. Second, what explanation do you have for the independent confirmation? The onus would be on them to come up with conspiracy theories...indeed the main attacks on the credibility of the WPI are already a bit conspiracy theory-like to me: suggestions "there's something a bit funny about them" are basically implying the whole thing's a massive scam, which is a bit hard to believe frankly.

    That does happen on long threads like this, I wouldn't worry about it yet. Hopefully somebody will bring it back on track...perhaps somebody could summarise the analysis and conclusions so far, that would always be good on a long thread like this one.

    Absolutely right. One thing I didn't realise until I got involved here over recent months, is that ME/CFS has been completely hidden from public view. I found it astonishing just how many people I spoke to, or interacted with online, had never heard of either. I talk to lots of people about it, and always ask them first if they've heard of ME, CFS, or ME/CFS. Very few have, but of course they all know about MS, IBS, GWI even, everything but ME. I find it odd because I knew of it 25 years ago because a friend had it, and I know a few people with MCS and CFS. But it has been hidden, and the key facts have been hidden, from other scientists as well.

    We tend to forget: psychology/psychiatry is still a poor relation within the scientific world, and doesn't really hold much power or sway. It's only because we are put in that pigeonhole that we've remained something obscure, not to be talked about. Recent events have put us quite a bit more in the spotlight, and there's some good education going on. It's still nowhere near enough, but people are waking up a bit. As you rightly say, now we've got the attention of the wider scientific community, we can hope for people without an axe to grind to come in to the field. Of course they will be warned off and told how difficult and unreasonable we are...but when we welcome them with open arms and show them that, so long as they don't keep asking us whether we might just be imagining it all, we're actually quite nice people...well that should give them pause for thought...

    It'll still come down to money though. Unless we can get money for research, in difficult times, we'll still get nowhere.
  5. Gerwyn

    Gerwyn Guest

  6. natasa778

    natasa778 Senior Member

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    Any betting people on here?

    My bet that they are going to go in the direction of 'yes it is there but it does not do anything... only a passanger.'.

    Then when CFS high incidence is confirmed they are going to stick to the line of 'pwc catch it because they are immune compromised. they are immune compromised because of stress and depression. they are depressed because they are somatising. somatisation causes immune suppresssion. xmrv is there but not pathogenic and should not be treated etc etc.
  7. alex3619

    alex3619 Senior Member

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    potential impact of contrary studies

    Hi Mark,
    When I say contrary studies, I mean GOOD contrary studies. XMRV research is either right or wrong, right now, whether we can prove it or not. If it is wrong it is only a matter of time before someone proves it with a contrary study - and most biopsychosocial papers are so badly designed that I doubt they could come up with a study of this calibre. If it is right, then the weight of evidence will force a consensus. The weight of evidence currently, in my view, makes it very probable that it is right, but we can't be absolutely certain.

    One of the really big pieces of evidence is how much better people seem to be doing on antiretroviral therapy. Then there was this German study, and Nancy Klimas is saying another confirmatory study is due soon (with some confusion as to whether or not she meant the German study). In addition, as has been reported on PR website, at least some small studies have scaled up, and as Cort noted people don't do that without a reason. Then there is the fact that there were three labs involved with the WPI Science paper - three well thought out and detailed studies, in one paper. Against this all the naysayers had is three rushed simplistic studies, although I think that might now be five studies.

    I have seen well designed negative studies end lines of research in CFS before. It has to be thorough, large scale, well designed, and explain the available evidence. I can't see how that could be done, but I know that if the research is wrong then someone might find a way to do so. I can expand on this in a case history of the urinary metabolites research that was initiated in Australia but died some years ago if anyone is interested. It is all about showing how incorrect results can be found. "Yes the results are there, but they don't mean what everyone thought they did, and here is the proof..." The irony is that the only way I can even dimly see to approach it would be to prove the studies are showing a different retrovirus, but I can't see how that would benefit the naysayers.

    Personally, I am still going to back the WPI. Even if I thought they were wrong, I would have to back them. it isn't enough to suspect they are wrong, we would have to be certain. So far as I can see, if you are against their findings or for them, but interested in getting the correct answers, you still have to back the research (athough perhaps at different labs) until we have enough evidence to reach a firm conclusion. People who try to hinder the research, one way or another, are not operating from a scientific agenda.

    I think there is enough evidence that I would start antiretrovirals if I could, but I am not in a position to do so.

    Bye
    Alex

  8. alex3619

    alex3619 Senior Member

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    interpretation or opinion doesn't matter

    Hi Gerwyn. Ok, Ill bite, lets do as you suggest. The conundrum becomes:

    Interpretation doesn't matter, only facts are important.
    Facts require interpretation.

    The point of the conundrum is still not changed, it is still the same message with the same implications, just a little less poetic. It is still a loop. It still teaches the same message. Interpretation and facts are interconnected. They CANNOT be separated. Facts can only be interpreted within a framework, but that framework could always be invalid and you have to go back to the facts for verification or modification. Science is based on this principle. A different framework can take the same facts and give a different conclusion. If someone comes up with a better framework, then the meaning will change and the old framework is often invalidated - but even if they are due to error or fraud, the facts remain unchanged, only their system theoretic interpretation changes.

    By the way, this comes from systems theory not philosophy, although I stated it in phisosophical terms. Most philosophers dont seem to understand systems theory, or at least not the ones I have debated with.

    The biopsychosocial people have their own theoretical framework - deeply flawed as far as I am concerned, but I think most of them actually believe in it. Under their framework they probably conclude the WPI research is dead, or about to be (and hence I think many will be shocked when this is sorted out). My framework in science is very different. I see the biochemistry as very compelling, it explains almost everything even if they haven't gotten around to formally expressing these explanations (scientists like to get some proof first, and dislike speculating). The explanation is so good that, like others on this list, if the WPI research were to be disproved I would want to start looking for another retrovirus. Same facts, different framework (interpretation), different conclusions. Different world views (theoretical frameworks) lead to many arguements, it is not just philosophical word games - which I agree can be a major problem, and politicians use these all the time, as do the biopsychosocial people. Indeed, their version of cognitive therapy is based on such word games. My earlier comment on buzzwords is grounded in this problem.

    You are correct in saying that precision is important, if I interpret you accurately. The problem is that this is easy in theoretical physics, but as you progress to chemistry and then medicine it becomes more problematic. Psychiatry is only marginally less problematic than sociology, and as you move further from hard math the potential for problems to arise only increases. My point is that even if it sounds precise, one still needs to be carefull. It needs to be questioned. Ultimately, it needs to be grounded in the facts. Colour me a skeptic, at least of this variety. When one reads a scientific paper, and not an abstract which is often biased, everything can be questioned. According to Popper, science is more about disproof than proof. This is what is happening on these forums (questioning), and is a usefull way to enhance understanding.

    You are also correct in stating that people need to understand the function of tools such as statistics. Even logic is deeply flawed, there is a formal logical disproof of logic. It is the translation from real world to math and back to the real world that catches people out, no matter how well educated or precise they are. There is a saying in semantics that later became a part of systems theory: the map is not the territory. This is why scientists need to go back to the real world, no matter how compelling the arguement, and test their hypotheses - or their statistics (which are, after all, only probability estimates).

    I apologise if I am going into this too deep for many, or am too off topic. I could say a lot more, maybe even a small book, but this isn't the forum for it. I am happy to continue this debate, but it is probably better to do it via private email, should anyone be interested.

    Bye
    Alex

  9. alex3619

    alex3619 Senior Member

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    Hi natasa,

    No bet, I'ld lose my money. Although I think Mark is right in saying that their fallback position will be they couldn't possibly have known till 2006 (DeFreitas and others notwithstanding).

    Bye
    Alex


  10. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Prevalence


    And this is just for the time being. If the virus is spread this easily, we can expect an even higher percentage of the population to acquire it as time goes on.

    So either a) this thing is going to be basically the end of the human race (since if everybody has CFS, nobody's going to be able to do the things necessary to sustain life in the numbers established on this planet), b) everyone on the planet is going to be on antiretroviral drugs forever, c) a vaccine is going to have to be created, or d) we're going to have to figure out other contributors/causes of the disease that we have a better chance of controlling.

    A vaccine sounds nice, but since there's not one for HIV, this one could be a while coming too.

    Apart from that, option d) seems to have the most promise as far as I see.

    I like the "submit your theory" idea too. Who might be the judge(s)?

    Lisa
  11. Knackered

    Knackered Guest

    There's no vaccine for HIV because it's so fast at replicating, each time it replicates the virus changes a little and after so many replications, the virus is much different than it was when it started, this is why it's difficult if not impossible to vaccinate against. XMRV doesn't replicate all that much so it rarely mutates, this makes it easier to vaccinate.

    Once drugs are shown to be beneficial against it they won't be able to say that.
  12. Adam

    Adam *****

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    Dr. Coffin more or less said (back in November last year at the CFSAC) that a vaccine was a slam dunk. An effective anti-viral medicine, on the other hand...
  13. flybro

    flybro Senior Member

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    saw a news clip the other day, where a young man was vaccinated against HIV, it was test vaccine, but good to know they are trialing them.

    altho I still wonder how much damage has been done world wide due to the 'unknown substances' that were hiding in the vaccines that have been used on us.
  14. alex3619

    alex3619 Senior Member

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    vaccines for XMRV

    Hi Lisa,

    I don't think the virus spreads easily, just continually. It is like compound interest, and has little relationship to seasonal or geographical illnesses. I predict it will grow slowly until it reaches a critical mass (which could be any time) and then will rapidly spread to anyone who is vulnerable. I would rather stop it before that happens. Of course, having the virus is one thing. We really lack good science on what mechanisms trigger it to become very pathogenic, if indeed it is. Certainly the androgen (sex hormones) and cortisol (stress hormone) sensors play a part in it.

    Unlike HIV, this virus mutates VERY slowly. Whereas a typical HIV patient might have 50 versions of the virus, most of which would be immune to a vaccine, I understand from current research that CFS patients tend to have only one virus, with only six versions amongst all patients. Although new versions of the virus are likely to be found, this is a prime candidate for a vaccine.

    Bye
    Alex

  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I hate it on threads like this that are active. I read posts after mine that make me think of a comment, but by the time I get to reading them all, I have forgotten my comments. I need to keep a notebook next to me for when I read threads.

    I do remember this thought. There is more CFS now than in years past. This is either change in lifestyle or infectious agent or change in environment. My point is, the increase does fit an XMRV is cause model.

    Now, with all infectious agents, many get it but do not get sick. And some are immune. Think of FeLV, it has been around a long time. Few cats are immunized from it (mine isn't and neither was the one I had before). Yet it isn't killing off large percentage of cats. So even without a treatment or vaccine, we are not going to see "everyone" getting ill from XMRV. Just as we might have husbands (most of us) and I guess wives, that have not gotten sick, even though we have the virus. As I said, seems triggers may play a key role, and possibly genetics, although I am bearish on that line of thought.

    Now, I got to go reread the posts to remind myself of the other comments I wanted to make.

    Tina
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Ok, got it.

    Whether research will continue. I see no doubt it will, whether high rate in CFS is validated or not.

    The main claim of fact in WPI study is that XMRV is human infectious retrovirus. That has been verified. Also, WPI claimed and has been verified that human immune system responds to it. So, that opens up so many questions that must be answered. As the National Enquirer says, inquiring minds want to know.

    Second reason it will continue even if CFS link is not verified soon, the Big C. It is linked to prostate cancer. Retrovirologists know the possibility is there for possibly other cancers, given nature of retroviruses, such as HTLV and the like.

    Oh, and the other thought....

    CFS not known.... This is why I have been saying that too much effort has been going into lobbying government. More effort needs to go to creating new stories.

    Tina
  17. bullybeef

    bullybeef Senior Member

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    Another point is the good old ME definition debate. The detractors could easily say, how do the WPI know they tested ME patients? There's no regulated proof that anyone has ME. We know there are biomarkers, but none are officially agreed upon. Until there is 100% proof whether someone has ME or not, the detractors have many loopholes to dodge the ME/XMRV link. The only thing we can do is prove we are XMRV+. God help the ones left behind, and I wouldn't be surprised if I am one of them.
  18. Cort

    Cort Phoenix Rising Founder

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    I have to say that I am still not convinced that these guys are idiots. I think Coffin would have been all over them if they'd made gross errors. Instead in his interview with Rrr he stated "I would have been alot happier (or whatever it was) if those negative studies hadn't come out". The Dutch reporter also reported that he said that not culturing the cells could have made a difference - so he had a good reason why the studies failed but he didn't say they were trash or worthless....

    Why would anyone knowingly set themselves up to fail? Yes retrovirology and PCR is complex but once you're in the field I can't imagine it takes that long to figure out how not to make a major error. Gerwyn knows alot more about this than me but that's my guess.

    Their major error, I thought, was that they jumped to the conclusion that their study - their thin slice - was definitive........Groom and Kerr didn't do that..just the CBT set did..... We know why the Journal rushed the study into print - they wanted to emphasize their results which fit with their paradigm. That was a bit unprofessional!

    I looked up McClure in Pubmed. She's not an ace researcher but she regularly publishes as a co-author of viral studies.

    Functional and structural characterization of the integrase from the prototype foamy virus.
    Valkov E, Gupta SS, Hare S, Helander A, Roversi P, McClure M, Cherepanov P.
    Nucleic Acids Res. 2009 Jan;37(1):243-55. Epub 2008 Nov 26.
    PMID: 19036793 [PubMed - indexed for MEDLINE]Free PMC ArticleFree text
    Related citations
    8.
    HLA-associated clinical progression correlates with epitope reversion rates in early human immunodeficiency virus infection.
    Duda A, Lee-Turner L, Fox J, Robinson N, Dustan S, Kaye S, Fryer H, Carrington M, McClure M, McLean AR, Fidler S, Weber J, Phillips RE, Frater AJ; SPARTAC Trial Investigators.
    J Virol. 2009 Feb;83(3):1228-39. Epub 2008 Nov 19.
    PMID: 19019964 [PubMed - indexed for MEDLINE]Free PMC ArticleFree text
    Related citations
    9.
    Diagnosing acute hepatitis C in HIV-infected patients: nucleic acid testing compared with antibody and antigen-antibody detecting methods.
    Nastouli E, Thomson EC, Karayiannis P, Main J, McClure M, Muir D.
    J Clin Virol. 2009 Jan;44(1):78-80. Epub 2008 Nov 4.
    PMID: 18986830 [PubMed - indexed for MEDLINE]
    Related citations
    10.

    14.
    Increasing incidence of acute hepatitis C in individuals diagnosed with primary HIV in the United Kingdom.
    Fox J, Nastouli E, Thomson E, Muir D, McClure M, Weber J, Fidler S.
    AIDS. 2008 Mar 12;22(5):666-8. No abstract available.
    PMID: 18317014 [PubMed - indexed for MEDLINE]
    Related citations

    17.
    Prevalence of primary genotypic resistance in a UK centre: Comparison of primary HIV-1 and newly diagnosed treatment-naive individuals.
    Fox J, Hill S, Kaye S, Dustan S, McClure M, Fidler S, Mackie NE.
    AIDS. 2007 Jan 11;21(2):237-9.
    PMID: 17197816 [PubMed - indexed for MEDLINE]
    Related citations
    18.
    Transmitted drug-resistant HIV-1 in primary HIV-1 infection; incidence, evolution and impact on response to antiretroviral therapy.
    Fox J, Dustan S, McClure M, Weber J, Fidler S.
    HIV Med. 2006 Oct;7(7):477-83.
    PMID: 16925735 [PubMed - indexed for MEDLINE]
  19. Cort

    Cort Phoenix Rising Founder

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    Actually those three studies didn't get that much press in the US at least but I think its just at first glance too 'distant' from CFS for the media to get on it. If it had been CFS patients I think that would have been different.
  20. Cort

    Cort Phoenix Rising Founder

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    I'm they didn't want to find it :). My guess is that the followup studies are taking so long because they're being more careful and comprehensive. Dr. Mikovits said her technique takes longer...(altho not this much longer!). Anyway, it appears the 'quickie studies' are over......now the more definitive studies will be coming out.

    We know the WPI is engaged in a replicative study and I believe the CAA/Glaxo Smith Kline study is. The Light/Bateman/Singh study is apparently using really powerful technology from one of the experts in the field - so we can trust that one as well. Dr. Bell appears to be doing a followup pediatric study with Dr. Ruscetti at the NCI - plus there's the DHHS study that Dr. Mikovits is involved in and watching closely - so we can look forward to at least five, it appears, strong studies using or closely emulating the WPI's techniques coming out. Dr. Klimas appears to be involved in a study as well.

    So we have lots to look forward to. This will not be a replay of the DeFreitas retrovirus scenario.

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