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Dr Martin Pall on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by liverock, Oct 21, 2009.

  1. Mark

    Mark Acting CEO

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    The 3.5 is indeed a very big number, I think most of us on here are very well aware of that.

    The 95/97/98% refers to all the samples they've ever tested over at least the last 6 months while they refined their assays (we have no idea how many samples that percentage is drawn from), not to the published study.

    And yes, when you see a percentage, you need to know what that's a percentage of and how reliable it is - I tend to think that's obvious enough not to need stating, but perhaps some people really do need to be constantly reminded of that, tedious though it is.

    But in my experience, whenever I hear the cliche about 'lies, damned lies and statistics', it's almost never used by somebody who's just investigated the statistics and is about to tell you why they're misleading. It's nearly always used by somebody who doesn't like the statistics and wants to sow doubt about them. The pendulum of scepticism over statistics has swung way too far the other way in my opinion, such that we don't seem to believe any of the numbers any more. Surely there are 'lies, damned lies, misleading statistics, and revealing statistics'? We have to work a bit to figure out which is which...
     
  2. garcia

    garcia Aristocrat Extraordinaire

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    How do you get 238 million from 3.5% and 107 from 97%?

    The two numbers which you compare are 3.5% and 97%.

    If you want to look at total numbers infected then it would be 3.5% of 90% (lets say 90% of people are "healthy") versus 97% of 0.5% (lets say 0.5% of people have ME/CFS).

    In other words according to this study roughly 3.4% of the population are "healthy" carriers of XMRV, where as 0.5% of the population have ME/CFS and XMRV. So roughly 1 in 7 XMRV carriers has ME/CFS.

    3.4% is a small percentage of the population compared to other infections associated with ME/CFS. This is not a ubiquitous infection like say EBV, CMV, HHV-6 etc.
     
  3. Mark

    Mark Acting CEO

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    Garcia: spot on! "Trained not educated" - I couldn't sum it up any better than that.

    The phenomenon you describe doesn't just apply to medicine though, it works that way right across society in any walk of life. Adherance to procedure, belief in group-think dogmas, annihilation of one's own opinions, suspicion and derision of mavericks and dissenters - these are the requirements for progression.

    The modern scientific world has become fossilised by these attitudes, having almost eliminated creative thinking from its now highly-developed infrastructure. That's why I'm fond of saying that Science as I understand it no longer exists in a meaningful sense. Those who call themselves Scientists are really Technologists. They build incrementally on the achievements of the past. The last major scientific breakthrough came half a century ago with the discovery of DNA. Since then, what has there been to put in the history books? The rest has just been technology: no imagination required. We have become insanely good at technology through the powerful techniques of limiting imagination, and consequently also too rigid to change dogmas and achieve breakthroughs without enormous effort over periods of decades.

    Groupthink does seem to be at its worst in the medical world, I'll admit, and I reckon nobody understands that better than CFS sufferers. But I would hesitate to single out the NHS for that criticism, because there are an awful lot of really wonderful and hard-working people in the NHS, doing a lot of vital work which we take for granted, and I think the groupthink tendency is a phenomenon of society and of the modern scientific world, not of the NHS in particular. Our view happens to be coloured, as PWCs, because our experience of the NHS is so devastating, but it isn't like that for most people.

    There is safety in numbers...if you are a number...
     
  4. bertiedog

    bertiedog Senior Member

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    To Rich- High DNA/RNA probably viral has gone

     
  5. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    [Holmsey:] In the mean time I think Pall has contributed with sound science and should be respected for that not branded an alternate practitioner because he's raised reasonable questions.

    Holmsey (and everyone), what he raised about Koch's postualtes was not "reasonable," it was completely false, not debatable, and would not be supported by any expert in infectious disease.

    I completely agree with you that he is a benefactor of you and me, and no one should be excessively cheesed off at him for making a mistake. A mistake is certainly morally defensible, easily -- but amorally speaking, speaking purely in the world of cold logic, his position was not intellectually defensible.

    Nor is XMRV 100% certain to be causal, at this point. Mikovits is slightly premature in saying that.

    I'm just gonna copy what I wrote to Pall on CFS_research. Since I dont want to irritate him, I wont copy his single reply without his permission, but all and sundry can certainly read it by using the link below. I linked it at the place where it occurs in our exchange.


    Ok. Heres me (Johnson):

    Him, Dr. Pall:
    for his reply, go to http://health.groups.yahoo.com/group/cfs_research/message/26708


    Me, replying to his reply:
    Later, I apologized for being a little bit sharp/arrogant in the first post, not that he was exactly sweeter than syrup to me, but nothing else of substance happened. Just check the thread if you dont want to take my word.
     
  6. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    If anyone wants to debate this on the logic and on the evidence, I'm totally up for debate. I'll even try to be entirely cordial about it, though that is a challenge for a beat up old sour jerk like myself.
     
  7. richvank

    richvank Senior Member

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    Hi, Pam.

    This is really great news! Thank you for sharing it. I think your experience is consistent with the partial block in the methylation cycle being the fundamental issue in the biochemistry in most cases of CFS. We've found that supporting the methylation cycle brings the glutathione up automatically, and my hypothesis continues to be that low glutathione is the fundamental problem with the mitochondria, leading to all the others there.

    On your GPx and SOD activities being low, I wonder how your essential minerals levels are now. Selenium, manganese, copper and zinc would be the ones that serve as cofactors for these enzymes.

    Thanks again.

    Rich


    Hi Rich

    I am not sure how relevant this is but I have been hopefully improving my methylation for the last 3 or 4 years by taking the active supplements and folinic acid as in Thorne's Basic Nutrients range plus lots of EFAs etc.

    Three year's ago I had Acumen's Translactor Test that showed I had high DNA/RNA stuck to my mitochondria. I also had high extracellular calcium.

    One month ago I was retested, having had a very good year. I am pleased to say there is NO sign of any DNA/RNA, its gone and extra cellular calcium is right down and normal. What I do have is a partial blockage of nickel which has consistently shown up in all the various Acumen tests for the past 3 years. Also still have low GSH peroxidase and SOD despite supplementation.

    If you remember I was also mercury poisoned but the levels of mercury appear to be fine now as it never shows up as a problem and my lymphyocytes don't over react to it whereas they do to nickel.

    I feel it is a partial success and will be happier if I can also get rid of the nickel which is proving to be very stubborn. It might just be that I have had a very high body burden of it and I know that can take many years to disappear. However it must be good news that the DNA/RNA which was considered high is no longer showing on the Translactor Test.

    BW

    Pam[/QUOTE]
     
  8. Sing

    Sing Senior Member

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    I am so impressed by your analysis and writing here! Yes, I also think ignorance is cultivated, taught and often backed up by heavy punishment for stepping out of it. An open, curious, interested mind, on the other hand, is what might actually see what is going on and figure out how to respond to it.

    In terms of doctor's conventional behaviors, there are also the influence of the very short time spans they have to work in dealing with each patient, and the controlling influence of the paint-by-numbers protocols they have to follow according to insurance company rules, hospital rules, the rule of "standard practice"--all that. They are first in line for lawsuits and other consequences when the real source of the trouble are the policies and structures they have to work within, which benefit insurance companies, etc.

    I just wanted to add these considerations to our frequent observations about the roadblocks and detours generated by ego protection and cultivated ignorance.

    Cecelia
     
  9. Holmsey

    Holmsey Senior Member

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    Thanks Mark, I certainly will and all of this helps, after all I've never been to Australia but beleive it exists because so many others say it does and in some respects I'm just testing the water, I want a balanced view and my first introduction to this thread was a bunch of book burning name callers. I'd like your opinion on this, yes the stats are overwhelming but at 3.4% of population then XMRV isn't uncommon, if it's realativly easy to transmit, an as yet unknow, then is it possible so many of us have it simply because we're suppressed, and yes I take the point that this is also an immuno suppressing agent but my question still stands. Destroy at will, please.
     
  10. Holmsey

    Holmsey Senior Member

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    Current world population, more or less = 7,000,000,000.
    divide by 100 then multiply by 3.4%, what I understand WPI found the rate of XMRV infection in their healthy control goup, this gives approx 230 million world wide, which of course assumes that the WPI's figures don't reflect geographic location.

    As to the other figures, I went from memory, perhaps it was 95%, but my understanding was that WPI initially tested 107 CFS samples and around 240 controls?

    Is it a memory exam, or are you so excited you couldn't figure out what I meant by yourself?
     
  11. Scavo86

    Scavo86 Senior Member

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    It would be so good to do a study investigating the prevalence of XMRV in other immunosupressed cohorts (such as those who are HIV+ or undergoing chemo) - this would give us a great handle on whether the virus appears across the board or is a nuance in our particular case. Oh how I wish I was a scientist now! I hope the powers that be have it all in hand though :)
     
  12. Holmsey

    Holmsey Senior Member

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    See my reply to Garcia, oh fellow professional. Im not an academic, didnt bother with Uni, wanted a motorbike so I went out to work, have an older brother who used to talk down to me as well, hes been quieter about his honours degrees in Comp Sci and Pure math since I agreed to take the test and he found that free thinking rational individuals without degrees can have just as high IQs as their educated counter parts.
    Enjoyed the rest of it but not sure that Garcia is doing anything praise worthy in reducing this to sniping.
     
  13. Holmsey

    Holmsey Senior Member

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    World needs beat up sour old jerks, but I've heard you're not that old. In any case I'm happy hearing what you have to say, so thanks for the effort.
     
  14. garcia

    garcia Aristocrat Extraordinaire

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    Toche.
    What I meant was why are you comparing the two unrelated numbers? You said:
    You are comparing the total number of people infected worldwide (238 million), versus the number of CFS people who had the infection in the small study (104). The two numbers are not directly related or comparable.
     
  15. Holmsey

    Holmsey Senior Member

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    Yes, you're right that would be apples and oranges, I was just trying to point out that if you extrapolate to the general population then there are a huge number of healthy XMRV carriers, so while 3.4 is a small number 3.4% of a very very very big number is still a very very big number. As I said in another post my worry is that XMRV is really quite common (3.4% common) and that we demonstrate a particular weakness to it thus we show as 95%.
     
  16. Scavo86

    Scavo86 Senior Member

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    I suppose if we were to do the same with HIV then the control group would show a much smaller % than 3.4 with infection of any kind.
     
  17. garcia

    garcia Aristocrat Extraordinaire

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    Ok I get what you are saying now. The thing is though that with numbers like that, 3.4% amongst general population and close to 100% in ME/CFS, the virus is very likely to be causative rather than us having a particular weakness to it. Of course we don't know for sure yet, but that is the way it is currently looking.

    Whether you get an infection or not is mostly determined by exposure rather than how strong your immune system is. Once you get the infection how you handle it depends on how strong your immune system is, but most of these infections are for life, and whether you have it or not depends on exposure.
    My whole family was exposed to chlamydia pneumoniae for example. We all caught it, healthy & ill alike. The difference is that it hit me a lot worse than it hit the healthier members of my family. We all carry the bacteria though.

    So if CFS people have 30 times the rate of the XMRV virus, you have to ask: are we 30 times more likely to catch the virus (doesn't make sense) or is it that this virus is what leads to CFS (much more plausible)?
     
  18. Mark

    Mark Acting CEO

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    Let's all be friends guys!

    I was a bit concerned about this myself actually, some of the reactions to Holmsey and Scavo's perfectly reasonable sceptical questions seemed a bit heated to me too, and I was a bit worried that I may have pounced on you guys a bit as well. My experience on this forum so far has been that many of us are prone to the occasional outburst and rant, but that thanks to our shared experience we're all able to understand that and so we make up and calm down. Some of the posts I've seen would have provoked a flame war anywhere else, and I love that this doesn't seem to happen here. We're all PWCs here, presumably, not sceptical friends and family, so the dynamic should be, and is, different.

    Garcia clearly has some outspoken opinions that are very similar to my own, and we're both pretty angry about those issues, perhaps we both need to be careful not to take that anger out on the other PWCs here.

    The questions Holmsey and Scavo raised are really interesting ones to discuss calmly I think. The bottom line is that nobody really knows the true meaning of that 3.7% in the controls at the moment, and without further studies all we can do is speculate. Those 3.7% may be latent and waiting to develop CFS, there may be some other trigger needed as well, or they may actually be feeling a bit under the weather because they have subclinical symptoms of a 'spectrum disorder'. It's an absolutely crucial question. But the bottom line is there are plenty of feasible explanations, and that doesn't at all undermine the theory that XMRV is the cause of CFS.

    Holmsey, your numbers on the totals tested ("WPI initially tested 107 CFS samples and around 240 controls") were spot on I believe, but as I've said before that small sample, and the evidence as a whole, is a bit more significant than you felt in your initial post.

    I think the theory that we may just have XMRV in our blood simply because we're immunosuppressed is not considered very feasible by anybody who's closely studied the evidence. It's a natural possibility to consider from the outside, especially if you believe CFS is psychological because that theory would be your only way out now, but I get the strong impression that the detail of the numbers and of the biology make it unlikely. On the other hand, it is perfectly possible that some immune weakness, genetic or otherwise, is also required, to open the door for XMRV to infect or to allow XMRV to turn into CFS. It's just not likely, given the numbers, that XMRV is an irrelevant infection that has no harmful consequence. Sorry, if I've garbled this point, hope I made sense here.

    The numbers such as only 1/7 of the 3.7% seem to have CFS, as you've calculated, pose really important questions. Are the rest dormant, having been infected but not triggered yet? Could it be that XMRV is only about 20-30 years old and has only recently turned into a pandemic-in-waiting, and those 3.7% will all get CFS in 20 years time? If we had any decent figures about the numbers of people with CFS worldwide, over time, we could even crunch some numbers right now, do some significant analysis of the possible models of the epidemiology and transmission, and make a good educated guess about it all. Sadly no decent data like that seems to exist because they never collected any proper information, because the disease wasn't real of course. DOH!

    One last thought on all this, I'm going to give up then because I'm not thinking very clearly today. I think the importance of the questions that Holmsey and Scavo have raised is so great that actually, the next thing the scientists should be studying and testing, rapidly and without having to publish right away, is the prevalence of XMRV in cohorts with a variety of other conditions. That would actually give us far more information than doing more testing on PWCs. WPI and CDC should probably be testing for the levels of antibodies in people with HIV, people with alzheimer's, people with other autism, etc etc. The results of all those tests would allow us to draw more conclusions than almost anything else. But at the end of the day, the cause-and-effect arguments are liable to remain tough to pin down rigorously, I'm afraid. You'll probably still have to pay your money and take your choice...
     
  19. Scavo86

    Scavo86 Senior Member

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    Couldn't have put it any better myself, what a brilliantly thought out and well written post. I only raise questions as I try and distant myself from having CFS and think about matters objectively - ultimately most people with ME, me included, I suspect would love for XMRV to be the root cause just so we could stop wasting all this time and treat the critter after waiting around for decades!!! Having posted earlier myself about the prevalence of XMRV in other immunosupressed groups it did occur to me that due to the depth that other conditions, such as HIV, are studied that chances are they would have found out about XMRV over in that arena by now. That is of course just conjecture on my part but maybe just maybe hopeful in itself.
     
  20. Holmsey

    Holmsey Senior Member

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    Absolutely, I think me and Garcia have worked out that we're actually coming from the same place. I see what you're saying about the weight of evidence for XMRV being causative rather than opportunistic and keeping this short would just go back to what I said when I first posted, Pall, even Gupta and the likes, may not have definitive answers, may not be fully right, but they are perhaps helping unravel why you can go from ill to well or just be a carrier waiting to crash, in either case I'm a big fan of anecdotal success stories when they occur in significant numbers. Anyway go have a well deserved rest, all of this will keep.
     

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