Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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XMRV - Not how but when?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Adam, Mar 21, 2010.

  1. Adam


    Sheffield UK
    Some members on Phoenix Rising have already tested positive for XMRV. Others are waiting for tests results. Others still (like myself) are awaiting testing.

    I wonder (like you do)and for the sake of argument, assume Judy Mikovits hypothesis is correct: XMRV causes disease. And the disease is what we presently call CFS/ME. And many? most people? with CFS/ME are XMRV positive.

    OK, continuing to set aside speculation for the sake of argument, when exactly did I get XMRV?

    XMRV copies at a pretty pedestrian rate, doesnt it? Which leads me to think how long after contracting XMRV might the effects of the virus finally become apparent?

    Is it months or years?

    I wonder this, in part because I used to think that sudden and gradual onset ME/CFS were different entities, but now I think they are most likely one and the same? Simply different manifestations of the same illness: a retrovirus infecting a wide variety of cells which would exhibit all manner of symptoms at different times or stages of the illness, with no two patients alike (which sounds awfully familiar).

    So I think, if I didnt get XMRV 14 years ago (when I was treated with antibiotics for a supposed hard to shift chest infection) when did I get it?

    Was it when I got eczema at 21. Or was it when I got stomach and bowel problems soon after that?

    How long would it take for the virus, XMRV to multiply in sufficient numbers for it to cause noticeable disease symptoms?

    12 years?

    Scientists and Non- Scientistsdiscuss?
  2. omerbasket

    omerbasket Senior Member

    It is an interesting question. I would add to that: There are kids with ME/CFS. Now, let's say that it is a 12 year-old kid. And let's say, and this is, even in our days, reasonable, that he didn't have sex ever. Now, it is possible that he got infected from blood, perhaps saliva (my worst fear is that our saliva, if we have XMRV, is contagous), but is it also possible that he got it from his mother when he was just a fetus, and somehow got ME/CFS symptoms just more than twelve years afterwards (I mean that he had been a healthy kid until he was 12).
  3. V99


    The impression I had from Dr Mikovits, was that something triggers the virus, e.g. puberty, infection, etc. Altering our hormonal response. Have I got that right?
  4. Athene


    According to Kenny De Meirleir, he sees a lot of people (relatives of patients with ME/CFS) who have what he calls "Pre ME/CFS". They have some of the symptoms, but not enough to fit a proper diagnosis of the illness. They are like a ticking bomb waiting for the illness to blow up when a trigger comes along. I think both my sisters have this, whereas my mother and my little boy have full-on ME, like me.
    So this theory says you can harbour the virus indefinitely, until something activates it.
    Thus some people have a "slow trigger" - extreme stress (which alters hormonal levels), sleep deprivation, maybe a very poor diet with nutritional deficiencies, whereas other people have a "sudden trigger" such as acute viral infection.
  5. leaves

    leaves Senior Member

    I always had stuff going on, Dr Klimas suspected neuroinflammation since a very young age. Exhaustion came later, but frankly it is not my most problematic symptom at the moment, I hate the cognitive stuff and toxic feeling more. When I look in my family I see a lot of ticking time bombs :)
  6. ukxmrv

    ukxmrv Senior Member

    I think that XMRV may be in my extended family and I may have been born with it.

    In my family - cancers - cervix, prostate and others in a large number of people. Both Grandmother and GGM dead from cancer at an early age. ME, not only in my immediate family but a cousin and a cousin's wife. Unexplained other diseases. Thyroid tumours and thyroid disease. Lots of allergies all through the family.

    As a child I was very health and active, this changed when I reached puberty and then it was different. The family "night owl" sleep pattern hit me and I suddenly found exercise difficult and hard. There were other differences and I think hormonally something was wrong. . Cervical problems in my late teens, an acute viral onset ME shortly after. Allergies hit me suddenly and badly.

  7. garcia

    garcia Aristocrat Extraordinaire

    Under normal circumstances this is a very slow growing virus, so it doesn't so much need time as the right set of circumstances, i.e. the right trigger. You could have XMRV for only a few months, but then the right trigger comes along (e.g. EBV infection), and wham you get ME/CFS. Or you could have been born with it and had it all your life.
  8. Robin

    Robin Guest

    Probably all of this stuff varies!

    If we use HIV as a model, progression to AIDS is pretty much ubiquitous; very few people don't progress without treatment. Rapid progression (untreated) to AIDS is < 4 years from infection. Average is 8 to 12 years, and people are considered "long term non progressers" if they live > 12 years without symptoms. Some people never progress though it's rare. Rate of progression can be influenced by overall health, age, other infections, and genetics. (It's speculated that stress and trauma can shorten progression too.) But it seems that there is a strong genetic component for "survivors" or people who remain symptom free indefinitely.

    I know this stuff has diddly to do with XMRV which may be very very different, but my point is that it's probably quite different from person to person. If it has a higher rate of non-progressors (XMRV to XAND) it may explain why it doesn't seem to be sexually transmitted even if it is. A slower average pace of progression might explain why a child infected by a mother doesn't show symptoms until puberty. And if there is some type of genetic immunity or predisposition, that may explain why it shows up in families. (Thankfully I'm the only victim in mine!)

    Ultimately, we just have to wait and see.
  9. Adam


    Sheffield UK
    I wondered about this too Robin because it seems the most likely route of transmission. Does anyone know any reliable statistics about the age of 'onset' of CFS/ME? I thought the mean age was early mid-thirties, which (I appreciate is all highly speculative) might tie in with the period in a lot of peoples lives when they have several partners before they settle down to one!

    I think I remember Judy M saying that they were considering hypotheses regarding the stuff we are speculating on here. Maybe she will hint at some of this in May? Or is it too early for them to make this next step?
  10. Gerwyn

    Gerwyn Guest

  11. vdt33


    I came down with ME/CFS in my early thirties. I felt like I had been run over by a Mack truck. But before that there had been indications that problems were emerging -- a severe flu in my Senior year of high school that kept me out of school for 2 weeks, trouble sleeping, a difficult pregnancy and postpartum depression, a sick baby. But most people have problems from time to time. I made it thru college and was able to hold down a job. Things seemed to get better for a few years. Then the Mack truck hit me after an operation and a divorce.

    My mother was always sick and exhausted when I was growing up. She made meals and rested on the couch reading books between meals. We had good food, but other than that we were on our own. My illness turned out to be very much like hers.
  12. Sing

    Sing Senior Member

    New England
    My best guess is that I got it early in life, or was born with it. Symptoms began slowly and with only a few systems at first. It became the full blown version by my mid-40's, which is peri-menopause, a time of weakening overall in terms of hormonal competence, etc. Brain cells are dying off then, aren't they?, diminishing the back up powers and thinning the margins of the body. In times gone by, and 3rd world countries now, many people die by then, so it makes sense that the older we get or weaker we are due to major infections, etc., the more available we are to this invasive illness.

  13. Cloud

    Cloud Guest

    My doc said the xmrv was likely there dormant for many years until it was woke up as a result of immune trauma (for lack of a better word). But how it was transmitted originally does remain a tough question, especially after 25 years of very good health. I thrived on stress my whole life. Loved excitement and extreme challenge. Cross country i have endured high amounts of stress without any adverse affects whatsoever for many years. Yet, my onset of ME/CFS started after a 6 month period of extreme off the charts traumatic stress.....then Hep B Vaccines.....boom sick. No acute infection involved.
  14. JAS


    I wonder when I got it too...during operations, through past relationships (did date an American!*!!), I was working in the city (london) when Yuppie flu was around and I did work with a guy who had had it for 2 years? But in an obvious way it is too late for me now and really immaterial I guess how I got it...but I hope and pray it is not too late for my children and husband. Incidentally lots of theories about blood, semen and even saliva...but what about sweat? Is it possible it could pass through sweat?

    Now I just want to try and stop others getting infected and look forward to hearing news on transmission when it all becomes a little clearer...XMRV is here regardless of whether it is in CFS/ME or not (I believe it is no co-incidence I have both) and the blood supply needs protecting. I agree with your doc Cloud in that I think I was infected ages ago but it was only triggered when conditions were my case inner ear infection/sinusitis. I do think that it was perhaps having a little play around with my immune system before then as I did have more infections etc the year before I came down with ME than I had suffered before. Just need to get over this latest crash...a real b*gger and feeling gain enough energy to become effective in my goal.
  15. bullybeef

    bullybeef Senior Member

    North West, England, UK
    Funnily enough, I have been discussing this elsewhere. We cannot be held responsible for the actions of a ancestors. If XMRV has been around a lot longer than the experts say (ME goes back to the 1800's in some textbooks), then it has had ample time to exploit the human race. And it has been discussed that like in HIV, AIDS doesn't effect everyone, so everyone with XMRV may not develop the latter (or XAND as it may come to be known). Which could explain why so many subjects in the US were found to be XMRV+, but yet didn't have ME, and were in fact healthy.
  16. SunnyGal

    SunnyGal Senior Member

    I think I either got it from my mom (vertical transmission... she also has CFS/FM and dad has prostate cancer) or at an early age (vaccine?). When I was 2.5 years old I had a very severe positive TB test. I apparently had a bad mycobacterial infection in my lymph nodes that caused the positive TB test (I didn't actually have TB). Obviously something wrong already with my immune system. XMRV already in the lymph system?

    I didn't have any other unusual health problems as a kid, but I was bit by a tick at age 9 and by age 10 I had obvious low energy. Lyme causes an increase in NF-kB which is a trigger for XMRV. Then as I hit puberty more symptoms came out (not uncommon with CFS/Lyme). Nothing severe enough to interrupt my life too badly. But, by 14 I had lots of symptoms that I recognize now.

    I continued mostly okay through adulthood, but every time I got more stressed I had more symptoms. Fatigue and low grade fevers were the obvious ones. My first pregnancy is the thing that really triggered more severe illness, but after 2 years I was starting to do a little better again. What drove me totally into the CFS hole was severe work stress for 3 straight years, 24x7 with no breaks.

    I seem to hit all the XMRV triggers over the years: NF-kB, hormones, and cortisol. Seems like I've had XMRV nearly all if not all my life. Would love to know where it came from, as I know we all would!

  17. Otis

    Otis Señor Mumbler

    I've had a slow progression but there have been points in time where the falloff has been significant and permenant. For me serious exertion seems like a trigger. I've had several instances where doing too much physically results in a permenant drop-off. I still get post-exertional malaise but for "larger" over exertions I never fully came back and then the definition of "large" is less as I have less reserve to tap. I don't get remissions and this has been a 15+ year slide down the mountain. The final insult may have been testosterone treatment, which according to a paper Parvo dug up could have kicked XMRV (not yet tested) into overdrive. I had to stop working (even part-time) last year and I'm worse off than when I left work 6 months ago despite rest.

    I've not seen anyone else describe their illness this way but I'm interested to see if anyone has a similar decline.

  18. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    That all sounds very familiar to me Otis. I've had three step changes (declines in health) with no remission in symptoms at all in between. Starting in 1986, I had a sudden onset of symptoms but no memory of any viral illness. Despite the symptoms I was able to study and then work full time but with difficulty. In 1996 I developed an additional range of symptoms which made working nigh on impossible and I was pestering my GP continuously for help with any of the symptoms to keep me in work. Finally, in 2005, I crashed and couldn't think, walk of drive for a year or so and was medically retired. I'm a little better now (can think, walk and drive for short periods) but still not back to pre 2005 levels.

    As for triggers, in 1986 I was very fit and also under some stress. In 1996 I should have been under less stress (having just finished a part-time MSc) and in 2005 I think I just couldn't go on anymore. Interestingly the original onset and first decline both followed foreign holidays (Greece and India) and my most consistent symptoms over the years have been gastro. My symptoms also suggested hormone problems but even endocrinologists only tested total T (which had fallen to borderline low) so I'm none the wiser.

    Assuming XMRV is the culprit, I would guess vertical transmission. My father claims that as a child he loved football but never had the stamina to keep up. His behaviour changed in his mid
    30's, stopping all the usual fatherly things (family trips out, DIY etc). He was a shift worker and started taking himself off to bed after every shift (to decompress as he called it). To the rest of us he just seemed to 'give up' on things.
  19. Cloud

    Cloud Guest

    Yes, definately similar Otis. Looking back, it was stress that caused the progression of my illness. After onset in 1993, I was able to work on and off for a decade. Not understanding the need for pacing, I was stuck in the "push-crash" cycle for 10 years attempting to keep my life. But I was like a man in quiksand....the harder I fought, the faster I sank. Everytime I crashed, the baseline level of illness came up (worse). I would come out of the crash, but the illness had progressed. In spite of all my fighting for understanding of what was wrong, I continued to struggle until I crashed into severe illness 6 years ago. I didn't get back up from that one for 3 years. Like you, even though the stress had stopped, I continued to get worse for a while. But I have come back out of that deep abyss now by stopping all stress and dramatically changing my entire lifestyle. I had to also re-write the script. I was actually forced into doing these things. Also, I have been able to make some improvement treating co-infections. But, it seems that progress will be short lived if I return to my old ways of pushing too hard, and without getting better intervention for the cause under it all.

    xmrv seems to explain so many things

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