XMRV and Transmission: The Big Question

Aftermath · Oct 12, 2009

With the landmark news from the Science paper, the one thing that all of us should be most curious about is as follows: If XMRV does, indeed, cause CFS, what is the mode of transmission?

I have a really hard time believing that this is a sexually transmitted disease similar to AIDS.

Information on this is still sketchy, but there are a lot of questions to be answered.

- If XMRV is the cause of ME/CFS and is transmitted in a manner similar to AIDS, how come we don't see abnormally high levels of ME/CFS in at risk populations like gay males and IV drug users?

- Again, if XMRV is transmitted in blood/bodily fluids, why do we see people get sick as children w/o engaging in any high risk activity (e.g. Annette Whittemore's daughter)?

- If the method of transmission is other than blood/bodily fluid, why are reports of transmission from PWCs to their caregivers so exceedingly rare?

These things really should be the questions of the hour...

There is a similar thread on another forum that has degenerated into conspiracy theories about vaccination. I have confidence that our readers are brighter than this and will not let this thread turn to a laundry list of wild theories with very thin scientific support.

That being said, it will be interesting to follow as more information becomes available about the method of transmission behind XMRV.

citybug · Oct 12, 2009

I read a couple places that it was found in saliva, I think from Cort's reporting. I would like to know more about how viruses do in saliva. Is that live, or viral parts? WPI says it's not airborne. Maybe some immune systems are able to kill it? Mice and tick bites are around children. There are a lot of different body fluids.

bettine · Oct 12, 2009

Suppose you could have carried the virus for a number of years before actually getting sick.

In the pre-AIDS era, healthcare workers, people in general were much less focused on blood or needles or dentist's drills etc. being potential carriers of infectious agents. If I remember correctly?

I remember a lot of things changed after AIDS: sterilisation methods, the way they draw blood in the hospital. At the dentist. Checking blood from donors?

Maybe, because people often mention vaccinations, even when vaccinating children they would have been less careful?

Could it be a possibility that in those years a number of us were infected?

This is purely speculation on my part.

Bettine

Cort · Oct 12, 2009

Here's what Dr. Cheney is saying about transmission

He believes its transmissible in every bodily fluid but I don't know how he can say this. Maybe he know something we don't (???). One of the microbiologists was careful to state that there is no evidence that it can be transmitted sexually. Aftermath pointed out to me that retroviruses are not generally very infective; ie easily transmitted. HIV can only be transmitted via blood or semen even tho it's found in the saliva as well.

Dr. Cheney also said this - which suggested to me that the WPI is assessing the degree of infection among close contacts of the infected ME/CFS patients. He points out that many people could have this virus and not come down with ME/CFS.

jenbooks · Oct 12, 2009

Perhaps it is most infectious at an early stage or when actively replicating.

jenbooks · Oct 12, 2009

Transmission

Aftermath said:

This sounds like an indirect injunctive not to speculate on how/why these viruses jumped species when they did (as I've said, the fact that lyme & tickborne illness, a viral CFIDS, and AIDS all popped up at the same time is suspicious to me). I didn't find that other thread degenerating, I thought there were some reasonable points made.

It's possible they HIV and XMRV both jumped species around the same time and caused epidemics. But it's equally possible vaccines were involved. Or human error. We have evidence SV-40 was transmitted by growing polio vaccine in monkey kidney cells.

One might say, Well what's done is done, we'll never know the truth anyway. We may get bits of the truth, though. And in addition, it helps us make better informed decisions in the future--such as getting annual flu vaccines, swine flu vaccine, or vaccinating our children or at least choosing what we vaccinate them for. In addition, if we *did* have more information we might insist on changes in how vaccines are made.

Finch · Oct 12, 2009

I agree that how this is transmitted has to be one of the most important questions for researchers to answer, if possible. I certainly hope they're able to find this answer in the near future, as it affects the entire population.

Of course, I don't know whether I have been infected myself yet, but the only person I've lived with since becoming ill with ME/CFS has been my husband, and he's very healthy. Everyone is healthy in my immediate family. Although I was worried a couple of times about a brother and a sister, they are fine now. My husband has a sister in poor health (but not diagnosed with ME/CFS), and she has a 21-year-old daugter who's been ill since her teen years and has been diagnosed with practically everything except ME/CFS, which I believe is her actual condition. This same sister also has a son who was diagnosed with CFS at age 7 but has completely recovered and is now a Marine serving in Iraq.

It's all a puzzle at this point, and we are all going to speculate and try to come up with how this could have possibly happened to us (if it has - we don't know individually yet). The problem is that until research comes up with a definitive answer, it really is all just speculation.

Jenbooks, I hope the researchers are looking into the possibilities you mention. I'm sure they're trying to look into anything they can possibly think of. I'd think they'd be willing to look into any suggestions but will certainly start with human to human, then perhaps parasites like ticks or fleas, mouse to human, then other possibilities. They're probably looking at the most direct routes first. We just have to wait and see.

Personally, I just have to keep reminding myself that I don't even know whether I have XMRV, so I can't even speculate on that yet! Patience can be difficult with something like this, but we'll get there.

acer2000 · Oct 12, 2009

The thing is, if we are to assume that "CFS" is all caused by this virus (which may or may not be true at this point) - there were outbreaks before the 1980s. The 30s, 50s, etc.. had outbreaks of an illness that would be eventually called ME. So I'm not sure that really mirrors the HIV/AIDS outbreaks, although it could. It all depends on what actually causes/caused those illnesses.

kolowesi · Oct 12, 2009

transmission ideas

Disclaimer, I may be remembering some or all of this wrong.

In a food service class, I learned that viruses can be transmitted in food and cause people to get sick. It's not the same thing as bacteria which are actually growing in the food, and turning the whole container of whatever into bacteria.

Also dimly remembered, maybe from molecular biology class. Some viruses are temperature sensitive; HIV is one of these, so it needs to be transmitted through a fluid that is roughly body temperature.

Combine these two factoids, and I think it's possible that someone could cough in some warm, not too hot food, and transmit a virus in the sputum. Then the person's stomach acid could destroy it, maybe, or the immune system in the gut could get rid of it.

If a person has low stomach acid and/or sub-optimal gut defenses, maybe the virus could get into the bloodstream.

I also remember that some bacteria are themselves infected with viruses.

Some viruses can live for a long time on door knobs, etc. Doubtful that XMRV is one of those or everyone would have it already.

Some viruses reactivate occasionally even in healthy people. EBV supposedly does, and is shed in saliva at these times. Also, EBV hangs out in the throat, in the lymphoid tissue (around the tonsils?), so it's easy for it to get into saliva. Something like 90% of us have been exposed by adulthood.

HHV-6B is also very contagious, and causes 30% of infant visits to the ER (or so I read). Most adults have been exposed to this also.

So, some questions I have are, is XMRV temperature sensitive? What tissues harbor it, besides the bloodstream? Does it survive stomach acid?

Viruses are just genetic material surrounded by some kind of coating. Some of them can "live" a long time outside the body. I think the temperature-sensitive ones are much harder to transmit.

I will try to look this stuff up and verify, if I can remember. Feel free to stomp on anything if you know it's incorrect!

Kelly

froufox · Oct 12, 2009

Thanks to everyone for the thought provoking discussion on this recent big news. I have been a bit too brainfogged the last few days to feel I can make a proper contribution but it has been really interesting to read everyone else's thoughts on all the threads.

I just wanted to say something about vaccines. I am certain that my ME was triggered by a course of Hepatitis B vaccines back in 1993 when I first became ill. One of the problems with vaccines is that they can sometimes overstimulate the TH2 arm of the immune system at the expense of the TH1. I feel that in my case, whether I have XMRA or not, it was the vaccines that disrupted my immune function and resulted in me 'catching' a virus going round at that time and not being able to fight it off leading to the CFS. Who knows if I am carrying XMRV or not but I feel my terrain was altered so that I could not fight off that initial ear infection and subsequent infections. I also have lyme and coinfections and viruses too. I always felt 'viral' all the yrs I have been ill and my ME symptoms always improved when I got the symptoms of a cold. It seemed like my immune was too switched off, by some kind of suppression, to produce the symptoms of a cold.

The vaccines also contained thimerosal which would have also poisoned my system and resulted in more TH2 stimulation and immune system dysfunction, perhaps depending on my genetics. Who knows if the vaccines were contaminated too as you say Jenbooks it was proven in the case of the Simian monkey virus in polio vaccines. The Hepatitis B vaccine has been linked to an increased susceptibility to M.S. as was found in France several yrs ago and many people with MS have been found to have lyme, CPn etc. A few CSFers also seemed to have had their illness triggered by vaccines including the Hep B one.

It would be impossible to determine whether in my case that it was down to the toxins like thimerosal in the vaccines or whether it was it was due to too much TH2 stimulation generally, leading to a susceptibility to intracellular infections though just intuitively I suspect that the mercury was an important factor.

If we focus on the virus its easy to look for a simple cause and effect situation but if we look at the terrain of individual people there will be many different reasons how and why people get infected at any particular time eg antioxidant & essential fatty acid status, genetics, stress, nutritional deficiencies, vaccine exposure etc, and then it becomes much harder to find one simple cause and route of transmission.

In my case none of my ex boyfriends had ME/CFS and none have come down with ME/CFS since having contact with me so if I do have the virus, I dont feel that if I have caught it from anyone, but then again maybe I did and then the immune suppression caused by the vaccines reactivated it... But who knows as people have said it is all speculation at this point...

I guess my feeling is that the terrain is still the most important thing.

Cort · Oct 12, 2009

I think you're right. It'll be interesting to see how many close family members are carriers and are not ill. Since we know that there are quite a few people that carry this and are not ill there's got to some triggering factors - perhaps something in the early phase of an infection - as I think Jenbooks suggested - triggers the replication of this virus in some people.

cold_taste_of_tears · Oct 12, 2009

Hi, regarding transmission.

My mother told me two interesting facts years ago:

1) She had a blood transfusion 5 years before I was born.

2) She was asked to donate blood for 'research' when she was pregnant with me, as she had something 'interesting' in her blood. (Because it was apparently a large amount requested, and not a blood test, she declined to give any).

So I would say for me personally maybe this is how I 'got' XMRV?

Since I've had ME, I've already had a positive LMW Rnase-L, Poor lymphocyte ATP function, had high viral titres to HHV-6b, and I've got DNA 'leaking' into my blood out of the cells apparently, 80% miss-shapen Red Blood Cells (cupped shape), and a citrate level of 10x the normal level. I think citrate is something to do with the citric acid cycle and muscles?

So if this is due to XMRV, or means I'm more prone to its effects, who knows.

I'll update you guys on some more tests I've having if it interests you, regarding DNA toxicity. I hope we can all get some help, finally.

kurt · Oct 12, 2009

Transmission a moot point?

I know there is a lot of interest in the transmission question, but if I understand correctly what I am reading about retroviruses, they can lie dormant for years, and then be activated by any one of a number of stressors or immune events. This is what happens with HIV becoming AIDS after 10-12 years, for example. So how can we possibly hope to uncover our source of infection?

For those of us who eventually show positive for XMRV (probably not all of us), transmission will be a moot point. We have it.

What I do know is that it is not possible for this to be exclusively an STD, too many people I know with CFS have been virgins then monogamous with virgin spouses, even back several generations. If it is exclusively blood-born that leaves only one vector for people like this and that would be insects. Mosquito or tick, take your pick.

But again, it is a moot point. And only 10% of the population is even vulnerable. I do wonder about airborne transmission, regardless of what WPI says, because just before I started my own downward spiral into CFS I was in a meeting with a person who was coughing and very sick and should have been at home in bed (when will people learn), he ended up on antibiotics for weeks to get well. I later had the same symptoms so obviously caught the same bug from him. Maybe that immune event triggered a latent retroviral response in me, I suppose that is possible, but it seemed that the illness added some new bug to my system that has never left. So many viruses can be transmitted airborne, why not XMRV? That would make sense, particular in cluster events. And with limited genetic susceptibility in the population, it would fail to become epidemic after clusters. Airborne just seems to match the data well.

garcia · Oct 15, 2009

In his recent Newsletter Dr Bell states the following:

I don't know if I'm interpreting this correctly but Dr B seems to be suggesting that XMRV could have been part of some other infection (e.g. EBV), in which case transmission becomes a moot point (we know how EBV is transmitted).

Summer · Oct 15, 2009

Dr. Nancy Klimas on Transmission

Is Chronic Fatigue Syndrome Contagious?
Q.

Ive had C.F.I.D.S. for 25 years. If it is a virus, is it contagious? How is it transmitted? Now I worry about passing it on to others. Thank you.
Nona
A.

Dr. Klimas responds:

"In general, retroviruses are not spread by air or droplet but are transmitted sexually, vertically (mother to fetus) and by blood transfusion. From what we have learned about other retroviruses, it is clear that the amount of virus matters, and people with low amounts of circulating virus are not as infectious as people with high levels of virus in the blood. With XMRV, the retrovirus recently found in many patients with chronic fatigue syndrome, we do not have enough information to judge how infectious it might be.

Whenever the possibility of sexual transmission comes up, people worry that they are in some way responsible for infecting sexual partners. While this is possible, it is important to remember that many infections can come from exposures between great-great-grandparents and maintained for generations as latent infections, or as infections from early experiences of any sexual partner in a chain of partners. We know that it is very unusual for both partners to develop chronic fatigue syndrome, or C.F.S. And while mother-to-child C.F.S. can happen, it is unusual.

It is clear that there are a number of factors that increase the risk for C.F.S.: genetics, immune function, severity of inciting infection to name a few. Just being exposed to, or even infected with, a virus does not mean that a person will become ill. We dont even know if infection with the XMRV virus actually causes illness, or if it one of several associated reactivated viruses (like HHV-6, EBV and enterovirus).

It important not to take these new findings about the XMRV virus as anything more than an exciting new development. We need confirmatory studies, then studies to see if the virus is contributing to the cause of illness persistence and symptoms. The good news is that if XMRV is linked to C.F.S., there are many antiviral drugs that have already been safety tested in H.I.V. that may inhibit viral replication. So those studies could be designed very rapidly"

This excerpt and complete article here:
Readers Ask: A Virus Linked to Chronic Fatigue Syndrome

hvs · Oct 15, 2009

Aftermath said:

1. Simple, mothers transmit the retrovirus to fetuses.
2. Existing lit. shows a high rate of infection among those dwelling with XAND sufferers. (It's extremely high, but the fact is this is still a rare disease, and only a fraction of those infected develop diseases like XAND and prostate cancer.) See "Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients" Journal: Journal of Chronic Fatigue Syndrome, Volume: 13 Issue: 1, Page Range: 3-13

Cloud · Oct 15, 2009

I too first became ill in 1993 immediately following the second dose in my hepB vaccine series. I was also under a lot of stress, but did not have any acute infections at that time. This all makes a lot of sense that I had a latent chronic retro-viral infection that was kicked in the ribs and roused from it's sleep by the HepB vaccine. It explains a lot of things very well. We will have answers really soon. I had to do be tested for XMRS this week when at Dr Petersons because the results could create significant implications for my ongoing Vistide treatment. I will get those results when I return in 2 weeks. I hope to be XMRS negative for obvious reasons.

QUOTE=froufox;6985]Thanks to everyone for the thought provoking discussion on this recent big news. I have been a bit too brainfogged the last few days to feel I can make a proper contribution but it has been really interesting to read everyone else's thoughts on all the threads.

I just wanted to say something about vaccines. I am certain that my ME was triggered by a course of Hepatitis B vaccines back in 1993 when I first became ill. One of the problems with vaccines is that they can sometimes overstimulate the TH2 arm of the immune system at the expense of the TH1. I feel that in my case, whether I have XMRA or not, it was the vaccines that disrupted my immune function and resulted in me 'catching' a virus going round at that time and not being able to fight it off leading to the CFS. Who knows if I am carrying XMRV or not but I feel my terrain was altered so that I could not fight off that initial ear infection and subsequent infections. I also have lyme and coinfections and viruses too. I always felt 'viral' all the yrs I have been ill and my ME symptoms always improved when I got the symptoms of a cold. It seemed like my immune was too switched off, by some kind of suppression, to produce the symptoms of a cold.

The vaccines also contained thimerosal which would have also poisoned my system and resulted in more TH2 stimulation and immune system dysfunction, perhaps depending on my genetics. Who knows if the vaccines were contaminated too as you say Jenbooks it was proven in the case of the Simian monkey virus in polio vaccines. The Hepatitis B vaccine has been linked to an increased susceptibility to M.S. as was found in France several yrs ago and many people with MS have been found to have lyme, CPn etc. A few CSFers also seemed to have had their illness triggered by vaccines including the Hep B one.

It would be impossible to determine whether in my case that it was down to the toxins like thimerosal in the vaccines or whether it was it was due to too much TH2 stimulation generally, leading to a susceptibility to intracellular infections though just intuitively I suspect that the mercury was an important factor.

If we focus on the virus its easy to look for a simple cause and effect situation but if we look at the terrain of individual people there will be many different reasons how and why people get infected at any particular time eg antioxidant & essential fatty acid status, genetics, stress, nutritional deficiencies, vaccine exposure etc, and then it becomes much harder to find one simple cause and route of transmission.

In my case none of my ex boyfriends had ME/CFS and none have come down with ME/CFS since having contact with me so if I do have the virus, I dont feel that if I have caught it from anyone, but then again maybe I did and then the immune suppression caused by the vaccines reactivated it... But who knows as people have said it is all speculation at this point...

I guess my feeling is that the terrain is still the most important thing.[/QUOTE]

Summer · Oct 15, 2009

I just posted this on another thread, but I think what Dr. Judy is saying is there are many triggers but one cause:

"According to Dr. Mikovits, XMRV (which admittedly sounds like a satellite radio system for your Winnebago) can lie dormant in people, until it is "turned on or off" by other factors, such as stress hormones like cortisol, or in response to the presence of inflammatory "cytokines," protein molecules secreted by immune cells to help regulate the immune system."

Is Autism Associated with A Viral Infection?

acer2000 · Oct 15, 2009

This comment was found in the interview with Dr. Klimas that was posted on the NYtimes site followin the original article and I think it needs repeating. Here is a link to the interview -

http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

"I found the comparison to H.I.V. (all because it happens to be another retrovirus) to be alarmist, unnecessary and at worst, the kind of sensualist factoid reporting thats more typical of a tabloid! From what I gather the link between the two is weak and general at best.

What angers me is that the comparison to H.I.V. is completely out of context; there are many retroviruses that are not known to cause any pathologies at all comparing it to the one that is most well known and feared is simplistic and quite simply wrong. We should not forget that retroviruses have been common through out human history, and while some do not cause disease at all, most are nowhere near as extreme as H.I.V.

To compare the virus to H.I.V. is to create undue alarm and suffering to people who are already dealing with a difficult disease. Not only is the comparison useless outside its context, it does nothing to provide useful information to the reader.

I ask that you think of the moral consequences of your sloppy comparison the horror and anguish of those that might have thought that it might be as debilitating as H.I.V., as well as the dread of the thought of potentially passing it on to another person."

---

From the comments section:

"I second Davids post above about automatically linking XMRV to HIV. I have been mortified, its tearing my first new relationship with a woman in a long time to shreds, and causing my past girlfriends and family great anguish and fear. It is utterly irresponsible to 1) assume causation and 2) link it HIV without further data.

Scaring people about possible transmission does increase research dollars but at a great cost to many patients. Some, albeit a minority, of patients have managed to put a life back together and for Dr. Klimas to say she would rather have HIV than CFS is another statement that is likely to sew fear. However, I do thank Dr. Klimas for being much more professional in her responses than those from WPI."

---

In other words, be careful what you wish for. :-(

Thoughts?

Advocate · Oct 15, 2009

Quote: "I found the comparison to H.I.V. (all because it happens to be another retrovirus) to be alarmist, unnecessary and at worst, the kind of sensualist factoid reporting thats more typical of a tabloid! From what I gather the link between the two is weak and general at best.
==========================

I think the point that Dr. Klimas was trying to make was that CFS is a very serious, physical disease--it's not psychogenic, as the CDC would have us believe. She was saying that CFS can make people sicker than HIV, that HIV is at least treatable.

XMRV and Transmission: The Big Question

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