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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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National Cancer Institute Q and A on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by George, Nov 18, 2009.

  1. oerganix

    oerganix Senior Member

    Mark and the 6%

    Mark, you said:

    "3. The thing that intrigues me most is that the details of the controls suggest something else as well. Suppose, hypothetically, that these two studies are both fairly accurate results within a few fractions of a percentage. In that case:

    - about 3.75% of healthy controls have XMRV
    - about 6% of noncancerous controls have XMRV

    The difference between these two groups is around 2%. That suggests that the percentage of the population who are non-cancerous but not healthy and infected with XMRV is roughly 2%."

    Please take into consideration that the 6% "noncancerous controls" were all men and the "3.75% healthy controls" were both male and female.

    One of the reasons that more women than men have ME/CFS is probably that women's immune systems are different from men's, in that their bodies have to tolerate "foreign" DNA in order to perpetuate the human race, that is, to be pregnant and stay pregnant for the necessary time to reproduce.

    For instance, women who have been impregnated by a man with an incompatible Rh factor develope antibodies to any future pregnancy which results in spontaneous abortion, miscarriage or stillbirth, due to hemolitic problems with the fetus. An Rh factor vaccine has been developed to avoid this problem with subsequent pregnancies. This vaccine is routinely give to women who have abortions of first-time pregnancies so that they may have normal pregnancies in the future.
  2. Mark

    Mark Former CEO

    Sofa, UK
    Well done eagle-eyed oerganix! I realised that fatal flaw in my logic some time soon after posting but I must have got sidetracked and forgot about it. Sorry everyone - take it as a reminder to take my top-of-the-head speculations with plenty of salt! Just a bit of fun, that's all it is...:)

    I've been trying to rethink how my methodology of wild and pointless speculation could be reworked to take this crucial point into account, but the more I reflect, the more I realise that the other main problem with drawing any conclusions at all from those two numbers (I hope I mentioned it before) is that the prostate study was only looking in the prostate cells, and the WPI study was looking in the blood. The figures for infection rates of various different cells probably vary quite a lot. So I'm not going to push it, but reflecting on oerganix' point also makes me even more convinced that there's something really interesting unfolding in the detail of these numbers, and just one or two more bits of data on controls and I could really get going...

    For now all I can really conclude is that:
    1. The 6% remains a decent bit of evidence supporting the low level of XMRV infection in the general population, compared with the 95% in PWCs, therefore supporting the validity of the WPI study.
    2. There's a very tenuous early suggestion of a higher XMRV infection rate in men than in women.

    The 2:1 female/male ratio of CFS has always seemed like a suspicious kind of ratio to me: 2:1 seems to be pointing to something (by which I mean something biological, ie I took it as yet more evidence that the condition is physical, anyone know how close to 2:1 that ratio is, internationally?). If the XMRV infection rates turned out to be, say, 2:1 the other way, these two bits of data would be pointing even more strongly at a key part of the answer...

    OK: I wrote that before I crunched the numbers, here's what I got:
    (a) if the WPI study was weighted with the controls matching the PWCs at 2/3 female, combining the two studies would yield infection rates of 6% male and 2.7% female, and
    (b) if the controls were 50/50 men and women, the rates would be 6% male and 1.5% female.

    This speculation is nothing if not wild and idle, but in case (a) I seem to have got close to exactly the 2:1 male/female infection rate I thought would be intriguing, and in (b) 4:1 is also interesting. I feel sure there's eventually going to be something crucial along these lines, but I can't think what...

    Don't know about the differences between male/female immune systems but an understanding of that area would seem pretty useful right now. My main theory was that the triggering of XMRV replication by hormones would make a big difference in the behaviour of XMRV after infection, since it's presumably going to be replicating a lot more regularly.

    I think the only bottom line conclusion I can confidently draw, bringing in the association with autism (4:1 male:female) is that gender is obviously going to be crucial to the science of what XMRV is up to.

    I doubt I'll be posting much, if at all, for the next few days, so I'll reflect on all this and maybe I can come up with yet another grand theory to amuse you. Have a good weekend everyone!
  3. Aftermath

    Aftermath Guest

    Title Fix

    Title fixed, sorry for taking so long to get to this.
  4. George

    George Guest

    Thank You!

    Hey Aftermath
    I had no ideal that it was the Admin's who had to fix the title if newbies like me mess up (big grins). Thank you! Now that box that says "reason for edit" makes a lot more sense.

    No such thing as a "long" time with us PWC's is there? When we get to it is when it needs doing.
  5. Aftermath

    Aftermath Guest


    I'm going to see if I can find a way in the features to turn that off and let the original thread starter fix a title.

    Ignore "reason for edit" thing if you want. No one should feel the need to justify why a post is edited.
  6. Mark

    Mark Former CEO

    Sofa, UK
    Quick post from my phone...
    Checked the WPI FAQ and seems clear that the controls weren't gender-matched, the WPI had no patient info like that. So the 4:1 scenario is the one that would apply if the other caveats hold.

    Ok, I know, the sample sizes are too small for all this really, etc etc...but still, I think gender will turn out to be crucial in some way.

    Main other reason for posting now is the realisation that 67% is also the number for the first WPI test, which tests infectivity in the blood. Nice round numbers make me suspect they mean something, as I've said...

    So could it be that the female patients are the ones who tested positive on the first test? Based on the published info, it seems so...

    Does anybody else have any gender clues? Any research on any other gender differences? Given that CFS affects women more than men, one would have hoped that every study would have looked at gender in its findings.

    Maybe this belongs in a new thread on gender and XMRV if anybody else thinks these early clues might mean something.
  7. George

    George Guest

    Mark you have "WFRIH" syndrome (big grin)

    You're as bad as me with my "gotta find the point of Zoonosis" thing. I know I'm going a little nuts waiting for the next bit of "science" to come out.

    That's what I really like about this group. You guys find the science, you debate the science, you find the politics and you debate the politics. Everybody learns from everybody else and no one spends all of their time whining. (Although, the occasional whine fest is good for the soul)

    Mark I think you are on to an important point but don't have enough data. My guess, based on what you've written so far is that you are looking for the ??Thing?? that makes XMRV act differently in different groups of people. If I'm reading you right the CFS/ME group may have one set of gene triggers, while prostate cancer patients (obviously all men) have a different set of gene triggers, atypical MS will have a different set and so on with Autism.

    The only thing I can't figure is the Prostate cancer patients. The others can come under this new heading of neural immune but I can't figure the prostate cancer patients???
  8. Mark

    Mark Former CEO

    Sofa, UK
    Not sure whether I want to know what that is...:confused:

    Yup, me too.:)

    That's one of a number of things that's wonderful about this group. :)

    I know! :mad: But I have 3 bits of data on these lines now: 2/3 female incidence of CFS, 67% blood infectivity on the first study, and very weak evidence that suggests infection in the general population looks like 2:1 male:female. That's quite strong by my standards! :D

    That's one of the main things I'm looking for, definitely, but here I was purely following the numbers and seeing where they might lead, and in the end they led me to this gender difference issue.

    I am suggesting that XMRV might cause very different conditions in different people, but actually I was going with a different theory, not gene triggers. I still like that other theory so I'll repeat it: we know XMRV needs some help to get through the barrier of the cell in order to infect, and that it seems to need certain triggers and co-factors in order to infect. I'm then extrapolating largely from the observation that GWS is a variant of CFS is which troops exposed to lots of chemicals and stress developed a CFS-like symptomology which emphasises chemical sensitivities and brain-related effects, whereas other variants of CFS seem to start with an initial infection and develop symptomology emphasising vulnerability to infections. From that, my theory is that whatever form of physical or mental stress is present enables XMRV to infect specifically those immune cells that are switched on and dealing with that stressor (by pumping out antibodies), thus resulting in different conditions. Thus GWS, IBS, CFS, MS would all be different types of XMRV infection, where XMRV has infected different aspects of the immune system, based on what the stressor was that let them in.

    The theory please me because it seems neat. It would please me a lot if it turned out to be true! :D

    Yup, me too. I can't see any relationships there at all. Don't know anything about cancer really (but does anyone?!) so I've got no real clues. A vague suspicion that the known infection of prostate could link in with the male/female ratios and transmission vectors somehow, but more keen on the possibility that XMRV will turn up in other cancers as well in which case the prostate aspect would be irrelevant. If any other cancers are rising epidemically since the 1980s that would be very interesting too...
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama

    I believe Mikovitz said in the television show in Nevada (about 20 minutes on Youtube) that androgens, particularly progesterone "turns on" XMRV.

    She actually said that might explain why women are more likely to come down with CFS.

    I say that if this is true, it also explains why women are more likely to get sick while in perimenopause or late adolescence.

    For me, I had all the things going on at the time I plummetted. I was under tremendous work stress (lots of cortisol). I was 40, so I was in perimenopause. And I had a virus three years earlier that just kept coming back the whole year (or I had multiple viruses, upper respiratory).

    Which one of the triggers turned on my XMRV (I am assuming I have it) I don't know. Could it have been a combination?


  10. Mark

    Mark Former CEO

    Sofa, UK
    I was going to ask whether that was the case because it is indeed exactly what you would expect given the hormone findings.
  11. fds66

    fds66 Senior Member


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