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19 questions about XMRV

Discussion in 'XMRV Research and Replication Studies' started by Samuel, Oct 28, 2009.

  1. Samuel

    Samuel Bedbound with NO DOCTOR

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    Hi everybody,

    This is my first post. I joined because this forum seems to
    have good, timely information and friendly people.

    Here are questions that I have not yet seen answers to.
    They are by no means skeptical; they are just me trying to
    understand Lombardi et al. and know what is known.[fn:2]

    I have a strong bias in favor of asking questions even when
    they might turn out to be silly. Not doing so produces no
    answers, and sometimes a question that seems silly at first
    turns out to be deeply important.

    So here goes.

    1) Does anybody know the reason people positive for
    antibodies but negative for XMRV DNA are sick? Is it
    damage to the body? Will antiretrovirals help these
    people? Are there treatments being considered for them?
    Or is it due to the test and not the sufferers?

    2) Have the 2-5% who tested negative for antibodies been
    investigated to find out why? Is it likely to do with
    the test and not the sufferers?

    3) How high a percent would a perfectly sensitive DNA test
    probably show? What is being tested (other than PBMCs)?
    XMRV DNA before integration? XMRV DNA after integration
    (i.e. in human chromosomes)? The latter would be 100%
    for infected PBMCs given a perfectly sensitive test and
    sufficient PBMCs, correct? Can RNA be tested for? Can
    both types of DNA be tested for separately?

    4) What disease states are likely? For example, not
    infected, retrovirus not active, retrovirus active but
    not infecting other cells, retrovirus infecting other
    cells. Are there more states? Also, can you have
    antibodies and not be infected at all (e.g. perhaps
    because the immune system fought off viral particles)?

    5) What are the false positive and false negative rates for
    the tests offered so far? What is the likely rate for
    the WPI test? Under what conditions are the tests more
    accurate? Seems extremely important to know.

    6) What standard determines whether a test produced a
    false result?

    7) Knowledgeable people are saying that circumstances
    suggest causation rather than opportunistic pathogen.
    I'd like to know the (detailed) chains of reasoning here.

    8) If one of those chains is that all signs and symptoms
    are explainable by retroviruses in general, then why has
    a retrovirus been only one of many causal hypotheses held
    by those who are not denialists? Just differences of
    opinion about what could cause the signs and symptoms?
    Multiple plausible causes?

    9) Are ordinary viruses, fungal causes, other microbes,
    genetic abnormalities (e.g. Ehlers-Danlos Syndrome), and
    toxins (organochlorate, organophosphate, etc.) unable to
    explain all signs and symptoms?

    10) I am interested in the fungal connection. Many sufferers
    cannot rid themselves of fungal colonization, even with
    years of antifungals, and they are also hypersensitive.
    What parts of the immune system are broken in this case?
    Does XMRV break those parts? Do other retroviruses?

    11) Do other inflammatory effects, such as repetitive
    strain injury, appear to be explainable by XMRV?

    12) Has autoimmunity been ruled out? Could XMRV cause it?

    13) Does XMRV account for Los Angeles, Royal Free, Incline
    Village, Chapel Hill, etc. outbreaks? What factors
    would have made XMRV infect so many people then and not
    at other times and places? Are there tissue samples
    from pre-1950s outbreaks from which DNA can be reliably
    obtained?

    14) What proportion of medical staff has XMRV? Could it be
    high, thus (perhaps along with other pathogens or
    toxins) explaining Royal Free and the other medical
    outbreaks?

    15) I have heard that in one outbreak the sufferers were
    overwhelmingly (or solely?) those whose path to work
    took them through a single hallway. How does this fit
    in?

    16) What other diseases have been tested? I can think of
    about 25 that make sense to test for. Lyme, AIDS to
    find out if immunocompromised people are more likely to
    be positive and by how much, other immune diseases, etc.

    17) The website says this.

    We have detected the retroviral infection XMRV is
    greater than 95% of the more than 200 ME/CFS,
    Fibromylagia, Atypical MS patients tested.

    Was this 200 total? Was this antibodies?

    18) What are the individual numbers for FM, autism, and
    atypical MS? Was Gulf War Syndrome tested? I think
    Cooperative Diagnostics claimed so, but I did not find
    confirmation anywhere.

    19) There is rumor of a culturing test. Does anybody know
    what percent test positive for that?


    That's all I have for now. Thanks for reading this far. I
    know it's long :).

    I haven't figured out this site yet, so please bear with me
    if my settings are wrong.


    Samuel


    P.S. What mailing lists or IRC channels discuss these
    matters, and treatments?


    [fn:2] It's been a few days since I read the paper, so I
    might have forgotten a few things. Please bear with me.
  2. Wayne

    Wayne Senior Member

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    Hi Samuel,

    I was just thinking about your first question in #1, and realized that nobody has asked about it or discussed it. But for the life of me can't remember where my train of thought took me. Perhaps I'll think of it again tomorrow. (I'll read your 2-19 tomorrow as well). :)

    I did want to take a moment tonight however to welcome you to this forum. I like your philosophy. You never know where thoughts/questions will take us. So why not find out??? I think you'll be a great addition here.

    Kind Regards, Wayne
  3. Cort

    Cort Phoenix Rising Founder

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    #1 - it could be that the PCR test was inaccurate and showed too low a rate of positives; they could be positive - the WPI has suggested this. Its also possible I think that you could have virus disrupting your white blood cells without replicating.

    Lots of other good questions - I'm sure the WPI and others are working on many of them.
  4. gracenote

    gracenote All shall be well . . .

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    no silly questions

    Love your questions Samuel.

    Some of us have been wondering about some of these questions but haven't been able to articulate them so well. Also, some of them are way beyond what I could think to ask, but so glad YOU can think them! I didn't notice any "silly" questions among them.

    But I DID notice there were just a few more than 19 questions. I want a recount!
  5. dmarie4301

    dmarie4301 Guest

    Good, good questions

    I think probably the researchers are asking these things too. And more testing will definitely be done on other illnesses, such as Gulf War Syndrome.

    On Cooperative Lab's website, they are pretty much saying as far as I understand that the test is 100% reliable and no false positives or negatives. That's alot of confidence??? I am getting my test from them, so see what results I get.

    I would love to see answers to many of these questions. I also want to know about transmission. If it's through intimacy, then I got it from my ex husband who is not sick, so is he one of the 4% carriers?? And then, have I spread this to others since my divorce. And then, will this mean I will never get a guy now that I have this, if I do??

    Sorry, Im asking more questions.

    :p
  6. _Kim_

    _Kim_ Guest

    I worry a whole lot about transmission - if it's in saliva, does this mean that I will never kiss again?
  7. Advocate

    Advocate Senior Member

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    Hi Samuel,

    I hope you have been watching the webcast, as many of your questions are being answered scientists, doctors and other experts.
  8. Koan

    Koan Be the change.

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    Samuel,

    You are aware that you are, for the most part, asking these questions of lay people? Many, if not most, of these questions are beyond the scope of anyone other than the researchers directly involved in the work.

    It just occurred to me that there are discussion forums re retroviruses where this kind of discussion is very probably taking place. You might have better luck there. Not that you are not welcome, of course!

    We wouldn't want to look foolish, and generate misinformation, by making wild suppositions about the unknown.

    It is very flattering that you would think you could get answers to these complex questions here on the forum, and there may be a few scientists lurking about :cool: , but, it seems to me, that these are beyond our ken and many are, at the moment, unanswerable.

    peace to you,
    Koan
  9. _Kim_

    _Kim_ Guest

    Whew! Thanks for saying so Koan. I read the questions and my foggy brain just went *huh? and duh!* as I read down Samuel's list. I'm still working on saying xenotropic murine leukemia virus-related virus without putting too many -viruses- in the name where they don't belong.
  10. Koan

    Koan Be the change.

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    Not to worry, Kim.

    Peace out,
    Koan
  11. Forebearance

    Forebearance Senior Member

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    samuel's questions

    Thanks for putting those questions on here, Samuel. I'm sure a lot of us have them.

    I can speak to one of your questions, from my own experience and from things I've read on support groups. I guess it's question #10. There are a group of people with CFS who read Dr. Shoemaker's work and found that his discovery of biotoxin illnesses explained their symptoms really well.

    His theory of mold poisoning explains a lot of my symptoms. And yet, for me and other people, Dr. Shoemaker's solutions don't completely heal us. It feels like there is another factor, and it feels like that factor is some kind of a virus. It's just a layperson speculating, of course.

    Maybe a combination of biotoxin poisoning and the XMRV virus would explain the illness some of us have.

    I also wonder if the XMRV virus could have broken our immune systems in such a way that we are very affected by biotoxins. Or if the XMRV virus could have brought out our inherent genetic susceptibility to a particular type of biotoxin. Since I have a mold-susceptible genotype, did the XMRV virus activate it somehow?

    Would a person like me have to be exposed to XMRV and toxic mold at the same time in order to get CFS? Or be exposed to one of them first, and then the other? Does getting some type of biotoxin poisoning activate a latent virus that's lurking within us?

    Do other people have to get XMRV and a tick bite at the same time in order to get CFS? Some people with chronic Lyme disease don't get well from antibiotics, even when they take them for a long time. Is XMRV their missing puzzle piece?

    Okay, those are a lot more questions. Just thinking out loud.
    Forebearance
  12. Aftermath

    Aftermath Guest

    Intimacy

    Not yet, but all of us need to begin to get emotionally prepared for what is likely to happen if and when the WPI's work is replicated and a rock solid causal link to our illness is found.

    If this work precedes solid and conclusive research on the method of transmission, we all need to be prepared for life as social lepers.

    Let me make one thing clear: I am not suggesting that their will be quarantines of patients or other conspiracy theories.

    But still, if the causal link is conclusively proven, the tremendous media coverage we have seen following the recent WPI announcement will pale in comparison to what is going to happen. It's going to become common knowledge that ME/CFS (or XAND) is caused by XMRV and is a god awful illness (imagine all of your friends having seen a respected physician like Dr. Klimas on every TV channel stating that she would rather be infected with HIV than XMRV) and caused by a virus similar to HIV.

    HIV already scares the living hell out of people, and it's extremely well documented that transmission of the virus is impossible outside of sexual contact or exposure to blood. That being said, how many people would feel comfortable eating with silverware in a restaurant that we knew was previously used by someone who is HIV positive?

    Imagine every single media outlet repeating the following sound byte:

    "ME/CFS (XAND) is an illness worse than AIDS and is caused by one of three viruses in existence similar to HIV. Moreover, unlike HIV, this pathogen may be transmitted by saliva."

    Again, research has a long way to go before something like this is likely to happen. A causal link will have to be proven, and an explanation offered for why for some who harbor the virus do not take ill.

    For years and years, all of us have hoped and prayed that the seriousness of our illness would be recognized by physicians, the government and those around us.

    With research having essentially gone nowhere for the past 20 years, I don't think that a lot of us thought about the consequences that might occur if our wishes were granted. I know that I didn't.

    As the saying goes, "you better be careful what you wish for--you just might get it!"
  13. Kati

    Kati Patient in training

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    But then how do you explain that some people in a stable relationship don't get it from their partner and some do? It seems to me that the transmission is more probable from mother to baby than from saliva. I may be wrong.

    That said, I am a registered nurse. I am also reading Osler's Web, and just passed the section where Gunn from the CDC (1991) recieves loads of letters from doctors and thousand of nurses that got CFIDS. Personnally I am very convinced I got it from a cancer patients. I give chemotherapy, so the contact can be quite close when we start IV's. We usually tell the patient to take a deep breath when we're about to poke. Every now and then, there will be one blowing straight at you. In one instance, I had a patient talking and spitting saliva straight into my mouth.... ewwwww. Little did I know- I really should have reported that contact with body fluids.
  14. Aftermath

    Aftermath Guest

    This is, indeed a huge question to be answered. After causation, it is probably #1.

    Alternatively, the virus may get transmitted, but the recipient still remains healthy.

    Still, if the media plays this thing how the usually do, it may not matter to a lot of people.
  15. cfs since 1998

    cfs since 1998 *****

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    I think if it was transmitted in saliva more than people than 4% would have it. Epstein-Barr requires close contact (it didn't get the name "kissing disease" for no reason) but 90% of the population has had it. CMV and HHV6 have prevalence rates almost as high.

    One thing to think about is that only about 10% of people with XMRV (4% from the paper) have CFS (0.4% very roughly). So this can give the illusion it is not contagious, not even sexually, since most people who have it apparently don't get sick from it.

    I think it might be the case that many of us were carrying XMRV asymptomatically until some trigger caused it to activate. There are a ton of post-mononucleosis cases of CFS. If 4% of the healthy population carry XMRV, it may (or may not) explain why 4% of people develop long-term CFS after getting sick with EBV.

    So if there are geographical areas with an elevated XMRV prevalance in the healthy population, and another more easily transmissionable virus can activate it, it could give an illusion of outbreaks of XMRV even if XMRV is not transmitted through saliva. This could explain that, while there have been outbreaks, they seem to have been few and far between.
  16. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    I have found shelter with internet on this cold night so I will speculate a little...

    While we don't know for sure with XMRV, we do know that in patients with HIV and AIDS it can take a very long time after lowering their viral loads for their symptoms to improve and there is frequently some residual damage if they were very ill. The sort of neurological damage, hypothalamic and pitutary dysregulation and other common ME/CFS problems may or may not heal and if they do heal, may take a long time. Of course some issues may exist with testing too.

    No detail but I think a main piece of evidence is that this is not a ubiquitous virus ;)

    I think that the multi-symptom multi-system nature of the illness has led to many conclusions that look good through a somewhat reductionistic lens. Proponents of a given theory then tend to either ignore features that don't fit their theories or find a way to extend their theory to fit as best they can.

    In my case two years of antifungals did nothing. Dealing with the clinical signs that I was hypothyroid, most likely thyroid hormone insensitive since my labs were not really bad, made all the difference. Within three weeks of becoming stable on the right dosage of T3, my stubborn fungal infections were healed. BTW I have mold illness as diagnosed through the biomarkers used by Dr. Shoemaker.

    I can still have some gut and mouth blooms but no no real infections any more. ME/CFS causes so many changes in hormones that are required for health of the mucous membranes and skin, changes in body temperature and what appears to be significant immune suppression. Can XMRV account for this? Well to again look at HIV AIDS patients, we see common fungal problems along with hormonal problems and immune suppression. While I have no specifics on how XMRV operates in the body beyond the general model of retrovirus replication and DNA integration, it seems not far fetched that such a virus could account for these issues.

    I think so, through chronic activation of the innate immune response. There may also be neurological factors involved

    Note: I am not a doctor - just a sick and homeless person getting ready to swig my antibiotic and antiviral cocktail and catch some sleep indoors courtesy of a friend who also has MCS.

    Peace,
    S
  17. kolowesi

    kolowesi Senior Member

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    XMRV and kissing

    Just preliminary of course, but it sounds like a vaccine will be possible and will be available soon.

    That should confer protection to the uninfected, at least to some degree.

    HIV has been difficult to make a vaccine for because it mutates very fast and some other reasons I can't remember. But this one is a "simple retrovirus."

    Things could be worse.

    Kelly
  18. dmarie4301

    dmarie4301 Guest

    95% and Kissing

    :DHey Kim,

    Ive been wondering the same, since Im not married, how do I catch a man now? And with herpes too??? Will I be alone forever??

    Anyway, it's my understanding, and Im not positive but I think it's on WPI's site, that they refined their test and then retested the blood samples and came up with the 95% figure, up from 67%.

    Im new here and love this site.

    Donna
  19. dmarie4301

    dmarie4301 Guest

    Webcast

    Where is the webcast? Where do I go to see it??? Thanks. Im SO wanting to know everything.....
  20. _Kim_

    _Kim_ Guest

    We have to wait a few days for the webcast to be available. Until then, you can watch many of the segments on youtube. Just search for CFSAC and then choose [uploaded]=today

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