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WPI Finds High Levels of Retrovirus in ME/CFS Patients

Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 8, 2009.

  1. dannybex

    dannybex Senior Member

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    Very interesting points Koan, as always.

    I need to sign off however because each new post just leads me to ask more questions...which I know we don't have the answers for, which leads to more stress, which isn't good, etc.. :)

    But...I'll ask this, and then come back in a couple of days: If it's transmissable in saliva, then wouldn't it be a lot more contagious?

    so many questions...
     
  2. Dreambirdie

    Dreambirdie work in progress

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    saliva and "abnormal red blood cells"

    "ETA The fact that XMRV is thought to be transmissible in saliva could account for the orchestra and the basket ball team. HIV is not transmissible through saliva."

    I am searching my tired debilitated brain for memories of "saliva encounters" in the year, months, days before my initial collapse. I was a college student back then, so I'm sure I shared A LOT of food utensils, drinks, even toothbrushes without even thinking twice about it.

    My sudden onset happened with a "MONO-LIKE" illness, though I tested repeatedly negative (3 times in a row) for mono. When my father (a pathologist) finally drew and scanned my blood himself under the microscope, he said 75% of my red blood cells were "abnormal." He (like all the other doctors) had no idea what was causing this. In time the red blood cells went back to "normal," but my illness never went away. My father's dead now, so unfortunately I can't ask him any questions about his initial observations. But that's the main thing I remember.
     
  3. hvs

    hvs Senior Member

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    I think it's more likely that the folks without XMRV will still have CFS and the folks with XMRV will have XAND.

    This is not a bad thing. NO ONE gets better if we insist that all sufferers have the same thing. If we do that, there can be no effective markers, studies, or cures.
     
  4. Dreambirdie

    Dreambirdie work in progress

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    Good point.

    I have to keep reminding myself that this is just the TIP of the ICEBERG we've come up against. There's a whole lot more beneath the surface, that we don't know yet.

    Still it's quite overwhelming.
     
  5. mojoey

    mojoey Senior Member

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    Cheney

    Just FYI, Cheney has already posted on his blog about this. You need to pay to view it, a fact which is stirring up a controvery in its own right, but I paid and so far Cheney has posted 3 blogs about XMRV since yesterday. I can't copy and paste it here obviously, but I'll just say that he agrees that it's causal. In fact, he harks back on his days with Peterson and says they always thought it is a retrovirus. RE: Rnase-L he actually think this virus is the cause of Rnase-L upregulation and not the result.

    If interested, the website is cheneyresearch.com
     
  6. Cort

    Cort Phoenix Rising Founder

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    Game Changer

    A Blog I just put up on the website: http://aboutmecfs.org/blog/?p=920

    I just love that comment by LeGrice “NCI is responding like it did in the early days of HIV,” - that really gets me!

     
  7. cfs since 1998

    cfs since 1998 *****

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    Of course they checked the controls for antibodies too, they would not be throwing around a 95% figure without doing that.

    The following was quoted in post #3 of the thread: "Mikovits believes the association may be even stronger than the present work indicates. DNA sequencing only picks up active infections, she says, so she wants to study CFS exposure to the virus more broadly. In an unpublished investigation, she and her colleagues analyzed blood cells in about 330 CFS patients and found that more than 95% expressed antibodies to XMRV, whereas about 4% of healthy controls did."
     
  8. mojoey

    mojoey Senior Member

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    Thanks cfs since 1998

    Those are the exact numbers, when coupled with the 67% for antigen positivity (PCR testing) that Cheney deems to imply causation.
     
  9. cfs since 1998

    cfs since 1998 *****

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    Ampligen IS an antiviral. The failed HIV studies almost 20 years ago were due to Dupont's improperly packaging of the drug.

    I do not see this negatively affecting FDA approval. The FDA is going to look at the safety and efficacy data in the NDA. Whether a link exists between CFS and XMRV or not is not really relevant to that data.
     
  10. Kati

    Kati Patient in training

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    Koan, I swear to god I got EBV trough saliva transmission from a cancer patient. And lots of cancer are triggered by viruses. I make the connection. I only wish I could find a virologist willing to do all the testing.



     
  11. cfs since 1998

    cfs since 1998 *****

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    I have not heard that it is thought to be transmitted in saliva. What are you quoting? WPI's website FAQ says, "XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. It is not known whether XMRV is more easily transmitted than other human retroviruses."

    Tested negatively by what test? The mono spot test isn't very accurate. Antibody testing to EBV is mroe accurate, although cytomegalovirus can also cause a mono-like illness, so you should have been tested for that too. Your red blood cell abnormality is interesting; thanks for sharing.

    ---

    Like others I am also trying to figure out why a virus that is not easily transmitted can cause my condition (which I got when I was 16), and how it can be responsible for outbreaks, etc. The only thing I can come up with, and this is conjecture at this point, is that I could have had the XMRV virus at birth, or at another point, and then coming down with mono (EBV/CMV/HHV6) causes the two viruses to interact synergistically some how.

    Another reason I suspect that two viruses are required is because the 4% figure has shown up somewhere before. It is the proportion of patients who have CFS symptoms after 24 months after mononucleosis (Pediatrics 2008). The Dubbo study found it was 3% who had CFS at 24 months after being infected with EBV, Ross River Virus, or Q-Fever. Of course the similarity of the 3-4% having CFS 24 months post infection and the 4% health population XMRV could be merely a coincidence.
     
  12. Koan

    Koan Be the change.

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    Hey All,

    We are, understandably, spinning our wheels. It makes complete sense that we would want to chew over this information and compare it to our personal experiences but it is all only conjecture.

    I began the perhaps erronious statement that XMRV was transmissible in saliva. In fact, what WPI may have said was that it was found in saliva which is not the same as being transmissible through saliva. I don't think we know if it is or it isn't.

    I remember the early days of AIDS very clearly. The same kind of confusion regarding how easily transmissible it was existed. It took a long time to sort through the evidence as, I'm sure, it will for us, too.

    On another point: I also tested negative for mono initially, but when I did not recover over the next couple of months, I was tested again and found to have soaring titres for EBV. I remember my doctor commenting that the numbers made no sense because they would be considered unusually high even had the test been done nearer the beginning of my illness and just made no sense at all long after I should have, but did not, recover. It seems clear to me now that it was a reactivation.

    I find all of this speculation really fascinating but that's all it is just now. We can't know and I, for one, am not going to get too attached to any of my own theories. I'm waiting for more news from the guys at the "deep bench".

    Peace out,
    Koan
     
  13. dannybex

    dannybex Senior Member

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    okay...

    ...but if it is indeed 'the cause', then how does he explain the estimate 11.4 million people who have XMRV, yet are 'healthy' and not disabled with CFS/ME?

    ???
     
  14. Koan

    Koan Be the change.

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    In the interests of accuracy, I quoted Hilary J's assertion that the paper was submitted in May which may well be true. However, the "official" date of submission, as seen on the Science site is:

    Published Online October 8, 2009
    Science DOI: 10.1126/science.1179052

    Science Express Index
    Reports

    Submitted on July 14, 2009
    Accepted on August 31, 2009
     
  15. dannybex

    dannybex Senior Member

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    Here's a quote from Dedra Buchwald, of the U of Wash:

    "This may end the controversy as to whether there is an underlying infection in some cases of chronic fatigue syndrome, but is unlikely to explain all cases, says internist Dedra Buchwald of the University of Washington in Seattle. Retroviruses can awaken latent viruses already in cells. It is possible that chronic fatigue symptoms are caused not by XMRV but by other viruses that it activates, she says."
     
  16. Dreambirdie

    Dreambirdie work in progress

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    I think it was the mono spot test. That's the ONLY test that the idiot doctors I saw back then (in 1977) would do. They didn't even know what an immune system was back then. :rolleyes:
     
  17. Koan

    Koan Be the change.

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    Hey Dan,

    Can't stay away, can ya ;)

    I think others have mentioned that it could well be comparable to people who are HIV positive yet do not go on to develop AIDS even without treatment.

    This is both exciting and exhausting!

    Those of you who cannot lie down with their laptops must really be suffering now. I feel as though I am typing on a small boat in a stormy sea and I am lying down!

    I can hear the crashing!

    Take care all,
    Koan
     
  18. Dreambirdie

    Dreambirdie work in progress

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    Thanks Dan--This rings true in my case.
     
  19. dannybex

    dannybex Senior Member

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    Lol!

    LOL.

    You caught me, which is a good thing, as this is stressing me out...and thus crashing me out too much. I know it will take time to figure it out, but I guess there's something in all of us that wants answers NOW, I suppose because we've been sick for so long...but that's not only not rational, it's not fair to those who have produced these studies.

    Even though I'm curious to hear more on Cheney's take...I PROMISE here and now to log off until at least tomorrow. :)

    d.

    p.s. I did some Gupta meditation, and it really helped my sore, tensed up back...then came back here and it's tightening up again!
     
  20. Dreambirdie

    Dreambirdie work in progress

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    SF tv report

    I just called the San Francisco TV station (channel 7), to ask if they would do a story about these findings. They said they actually DID do a short segment yesterday evening, which I missed. Darn. I asked if they would do a longer follow story as a medical segment, and the woman I talked to said she'd pass
    that along and consider it.
     

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