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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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NIH/FDA XMRV Paper by Dr. Alter Out!

Discussion in 'XMRV Research and Replication Studies' started by Esther12, Aug 23, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    Yes we broke the record for the number of online people (by about 30%) and that broke the Forums :)
     
  2. Mark

    Mark Acting CEO

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    True - but the media have had access to it for a week, while we have been waiting for them to compose their articles.
     
  3. Mark

    Mark Acting CEO

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    Me too - but incredibly, the sceptics don't seem to be budging. On the BS thread on WPI/XMRV I see that some people are arguing that it could still be an opportunistic infection. In people with lowered immune systems. Lowered by something else presumably. And if we do have immune abnormalities, "wouldn't they be more likely to pick up a whole load of infections that most of the rest of the population shrug off?"

    The possibility that these retroviruses are just harmless opportunistic infections in people with lowered immune systems does exist, but it's hardly the more likely of the two possibilities! And yet, on they plough - it must be comforting to think they can just "shrug it off" and they haven't got sick because of their strong psychological state.

    Their position gets steadily more ridiculous, but on they go...
     
  4. Athene

    Athene Never give up

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    I had totally missed that Bishop report which found antibodies to XMRV in 25 of 26 healthy controls.
    There presumably is something which makes these people who are XMRV positive (or whatever we are supposed to call it now) stay healthy while the rest get so ill.
    The possibilities I can think of would be
    1) genetics
    2) another, imunosuppressive infection
    Erm, cannot think of anything else.
    So personally I think the jury is still out. XMRV really could be a co-infection, even though it is unbearable to think it may be so, because that would mean we are nowhere as near to the finish line as we hope we are.
     
  5. SOC

    SOC Moderator and Senior Member

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    The argument that these retroviruses are harmless opportunistic infections is very weak, imo. First, they have to explain why our immune systems are so impaired that the vast majority of us get these infections that very few other people get. That in itself is highly suspicious. Immune system problems that severe don't come out of nowhere. Makes more sense that retroviruses known to infect the immune system and are detected in patients are the culprits. Okay, not proved, yet, but what's the likelihood?

    Also, we aren't "picking up infections" so much as we're reactivating latent infections everyone else has. What are the other situations when these latent infections reactivate like this -- severe genetic immune abnormalities (that are detected almost at birth, they're so severe), tranplant situations where patients' immune systems are chemically suppressed, and HIV. These are not mild genetic immune abnormalities that commenters seem to be postulating.

    Finally, if their postulate is true -- that these retroviruses are harmless opportunistic infections, you wouldn't expect to see them in 85% of the patient population. Haven't we already learned that from the fact that no other "opportunistic" infection that's been seen in ME/CFS comes anywhere near an 85% infection rate? Some of us have reactivated EBV, CMV, or HHV-6, others have other pathogens -- I don't think any have reached even 40% infection rates in PWCs. Why should we postulate that MLVs, as opportunistic retroviruses would infect at such higher rates?

    Granted there's a lot we don't know about human retroviruses, but does anything we do know suggest they can be harmless opportunistic infections in people showing symptoms of --- (wait for it) retroviral infection? Possible, but seriously, how probable?

    I wish people would just THINK a little.

    As you said,
    :headache:
     
  6. citybug

    citybug Senior Member

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    Maybe they say XMRV and related Mulvs aren't know to be the cause because of the percentage of positive controls (which I would call a large percentage, not small). They can't say that the controls have MECFS (later they may find they have cancer). I don't think they could say it scientifically until they prove each step.

    My understanding is the polytropic Mulvs provide more mutation, one mulv can recombine with another mulv's envelope, providing more varieties of sequencing, possibly becoming more pathenogenic. If two are in a body and recombine can explain why some people do worse. We need to look at more of the polytropic mulv studies.

    Still no one knows what the XMRV envelope or mulv envelopes attaching to xpr1 does in humans. Dr. Mikovits said they are working on that at the opening.

    The commentary says maybe there are environmental factors. I think that is positive too, if people become more aware that chemical exposures, mold or vaccines could turn on retroviruses maybe we'll get a more healthy environment, which I definitely need.
     
  7. Mark

    Mark Acting CEO

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    I think it was the other way round, they found antibodies in 26 samples and checked and found 25 of those were healthy controls. Or something like that. Not that nearly all the healthy controls in the study overall had antibodies.
     
  8. alex3619

    alex3619 Senior Member

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    Hi Mark, the scientist in me notes that the opportunistic theory is still viable - barely. What amazes me is that people stick to remote possibilities as the evidence mounts. Sure there is a need for further research and proven causality. At the moment I would put MLVs as causal at odds of 9:1, and at least co-causal at 99:1. Sure there is a 1% chance there is nothing to it, reality is like that, but people playing the 1:99 odds are backing a small chance they are right to a high probability that more and more people are being infected, becoming disabled, or dying. And the blood supply is still not secure - anywhere. Ohh, and every additional person who becomes infected is probably adding a million dollars to the eventual costs .... every single person. At 10% of the population, the final cost to the USA alone is something on the order of $30, 000, 000, 000, 000, and mounting daily as more are infected. Ignoring this is the biggest financial mistake in human history. As a public health measure, the fiirst order of business is a vaccine, then mass vaccination for those who test negative for MLVs.

    Bye
    Alex
     
  9. Bob

    Bob

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    Here's some more info on this aspect, confirming what Alex has said, from the PNAS editorial...

     
  10. Bob

    Bob

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    You know when someone is on your side...

    Interesting to note that the only change to the paper, after the temporary withdrawal, was the addition of the following passage:

     
  11. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Thanks Bob & Alex, that clears up my query - integration would prove retroviral infection rather than ME/CFS causation.
    I guess I should have read the full paper first! (Well it was 02.00am UK time!)

    I'm wondering in retrospect whether Dr Alter's reference to 'a disservice to the community' actually meant the 'scientific community' rather than the 'patient community'?! It doesn't matter anyway, his and Dr Lo's paper has done us a HUGE service.
     
  12. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Superb point.
    Dr Mikovits made a similar comment v early on after the publication of the Science paper re the 67% positivity rate - something along the lines of ".. with percentages like that I think we've probably found the cause of Chronic Fatigue Syndrome". (Strange how I don't have difficulty remembering some facts like that!)

    And btw, hasn't there already been a ?European study looking for XMRV in an immune suppressed patient population very recently (I don't remember the details for this unfortunately!)

    I don't think they found any XMRV, or at the very best only a small percentage, which would be in line with the same kind of percentages found in the 'healthy' donor population.

    Does anyone remember this study please, the location and/or percentage positive findings?

    Perhaps the next step then is to do a study looking for XMRV (or related MLV's) in 100 immunosuppressed patients with various different illnesses and see what comes up, compared to a simliar number of reliably physician-diagnosed CFS cases.
     
  13. Rrrr

    Rrrr Senior Member

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    Alex, Alter said in his briefing that with Hep C you also get many variants. that is the norm. so i don't think it is multiple causes.
     
  14. Tuha

    Tuha Senior Member

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    What is a bit strange to me - in Alter study they found MLVs in around 85 % of cfs patients but they didnt find XMRV. in WPI study they found XMRV in 67 % of patients. Is it not a big difference? Alter found MLVs but no XMRV and WPI found XMRV in 67% of patients. I would also expect some XMRV finding in Alter study. This is really strange to me but with my scientic backgroud everything looks strange.

    Btw. I know one quy who visited de Meirleir in July and KDM told him that he found XMRV in 15 % of his patients. (I would also expect higher number - but it means at least that XMRV is not geografical). but please take this message unofficial
     
  15. Rrrr

    Rrrr Senior Member

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    WPI is now saying they are finding the MLVirus in 90% of patients, just about what Alter found (86%).
     
  16. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hi LaurelW,

    Villagelife posted this link to YouTube yesterday which is a vid of Dr Mikovits congratulating Dr Lo and Dr Alter and explaining the science.

    In the opening sequence she describes the link between XMRV and MLV's as follows:

    Basically XMRV includes MLV:

    X = Xenotropic (ie, the virus originated in mice but they can't get it now)
    M = Mouse Leukaemia Virus (MLV)
    R = Related
    V = Virus

    So it seems that XMRV is a specific MLV (mouse leukaemia virus) but there are several other related MLV's (which Alter and Lo just found in CFS/ME patients).

    Alter and Lo didn't specifically find the XMRV version, but they found other related MLV's in CFS (ME) patients.

    Correct me if I'm wrong science people please!

    HGRAD (Human Gamma Retrovirus Associated Disease) ie what we've probably got, is an umbrella term which includes all of these possibilities.
     
  17. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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  18. Tuha

    Tuha Senior Member

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    if WPI fond MLVs in 90% and Alter in 86 % - this is similar but if WPI found XMRV in 67 % of patients and Alter 0 % - this is really strange for me and I dont understand it. i think Alter was also looking especially for XMRV. someone has an idea why its like this? 67 % is a high number to dont find it in another study.
     
  19. Mithriel

    Mithriel Senior Member

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    XMRV is present in very low numbers. I don't think Alter cultured his samples to magnify any XMRV. He did not do any antibody testing either.

    Also his samples came from more specific areas, so it is possible that, say, the Lyndonville outbreak was not XMRV but another MuLV.

    Variation is the norm in retroviral infections. HIV comes in different types.

    Mithriel
     
  20. Megan

    Megan Senior Member

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    This paper is great news! Am only just getting my head around it now. The numbers are smaller than I expected but I am very uplifted by the supportive tone Alter has regarding the WPI Science study and their ongoing work.

    A couple of quotes from the paper that I find interesting:

    Absolutely! I haven't heard any scientists make this point yet. I would add that they should be taking out other illnesses also, and maybe asymptomatic relatives. My mother has had fibromyalgia for over 30 years and donated blood for about 20 of them, and we know WPI have already linked it to FMS. Thought she was doing a good thing of course. I donated blood myself when I was younger before I got CFS, but with my family background possible I was a carrier then (we have prostate cancer all over the place too).

    This was a nice swipe at the CDC! Interesting the emphasis they are now putting on the different cohorts. I think one important issue with all the definitional stuff that they have not taken into account is patient self selection, probably because its out of scientific control. Patients who bother to seek out Karmaroff, Cheney or Peterson or other 'CFS doctors', and pay heaps for it, are far more likely to be sicker than those who have not even bothered to seek medical treatment or are coming from clinics offering CBT/GET. Not saying that others dont have it. Just that there has to be a proability thing going with patients actions that is independent of whatever definition the researchers are using.
     

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