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Adrienne Dellwo

Chronic Fatigue Syndrome & XMRV: How Is the Retrovirus Transmitted?

By October 17, 2009

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The XMRV Discovery Series

Among the many questions surrounding the recently discovered XMRV retrovirus link to chronic fatigue syndrome and possibly fibromyalgia is: how is XMRV transmitted?

Because scientists have only known about this particular retrovirus for a few years, they still have a lot to learn about it. However, so far it appears that it could be transmitted through the blood. It is unknown if the virus is present in or is transmissible through other body fluids, such as semen or breast milk.

We don't know that for sure, but that's what researchers believe at the moment.

The biggest issue in my mind is that this retrovirus could be in the blood supply, transmitted to people during surgery or treatment for trauma, when the body is already in a weakened state. Will this become one more thing blood banks and hospitals test blood for?

When it comes to all of those fluids, I have to wonder if they account for the increased risk in family members of people with these conditions. It's generally believed there's a genetic predisposition, and if parents are unknowingly passing both the genes and XMRV to their children . . . are those children ticking time bombs, just waiting for other triggering factors to hit?

Taking Precautions

If you have chronic fatigue syndrome or another XMRV-related condition, should you take special precautions with your sexual partners, even if you're in a committed relationship? Should you opt for not breastfeeding your children? Should you not even have children?

These are big questions that each of us will have to answer for ourselves. Hopefully, we'll have a lab test before too long that will tell us whether we carry the virus, and that will be a big help. Until then, it's something to keep in mind.

Chronic Fatigue Syndrome Outbreaks

One of the many points of contention between a large group of chronic fatigue syndrome researchers and the CDC is reported outbreaks of chronic fatigue syndrome. They date back a few decades, and the CDC has always said there was insufficient evidence to confirm that they were true outbreaks of infectious disease.

Researchers and advocates are now pointing to this study, which includes evidence that XMRV is transmissible, as the smoking gun -- yes, chronic fatigue syndrome IS viral, and yes, we HAVE had outbreaks. It'll be interesting to see how, or even if, the CDC reacts to this research.

Do you think this will be a wake-up call to the CDC? Will you take precautions to keep from spreading XMRV to people in your life? Do you believe you've been part of an outbreak, or transmitted XMRV to someone? Leave your comments below!

Also See: The XMRV Discovery Series

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Comments
October 17, 2009 at 5:02 pm
(1) JennySRP says:

I’m very skeptical about the transmissions possibilities of CFS. XMRV may be one thing, but like EBV, maybe it isn’t the tell-all hell raising answer to CFIDS and FM. I have not been witness to ANYONE who has possibly transmitted or received the illness due to blood/STD related issues. This has been the most confusing part of the XMRV findings for me. CFIDS does not appear to me to be in any way contagious, but I’m not a doctor. I just feel there is a reason for all the docs telling us for so long that CFIDS is not contagious. I hope I am right because I have been very concerned about my future in romantic relationships and ability to have a family. =(

October 18, 2009 at 12:31 am
(2) Gnomes says:

What a way to further marginalise an already socially isolated group of people. I’ve never even heard any anecdotal evidence that CFS could be sexually transmitted. Genetic links sure, but sexual transmission? I’m glad about the findings concerning this new retrovirus, it’s a great new avenue for further research and possibly justification for more research dollars, but all they have discovered so far is a possible link, the same as they did with EBV. They are far from identifying it as the cause of CFS, and far from proving that CFS is in any way contagious. I think Ms Dellwo should have thought twice before writing an article that may raise a lot of unwarranted fear in those close to people with CFS.

October 20, 2009 at 7:17 pm
(3) Adrienne Dellwo says:

Gnomes,

The fact of the matter is, XMRV is getting into people’s bodies somehow. I’ve spoken to people with ME/CFS who believe they’ve transmitted the virus to a spouse in some way, because their spouse got sick shortly after they did. There also have been multiple suspected outbreaks of ME/CFS that the CDC denies while many researchers say they truly were outbreaks of something infectious.

Now, saying that XMRV is possibly transmitted through sexual contact is not the same as saying ME/CFS is transmitted that way (even if XMRV is confirmed to be a major contributing factor.) Since some people carry XMRV and don’t have ME/CFS, there’s obviously other contributing factors. We can’t yet say what those contributing factors are, but opening people’s eyes to the possibility now is the responsible choice. If information like this is kept quiet, it only allows disease to spread more, and those who keep it quiet are guilty of contributing to that spread.

March 11, 2011 at 9:52 pm
(4) Betth says:

Just because spouses got the syndrome at the same time doesn’t mean one infected the other. CFS could be caused by something in the environment that both spouses were exposed to. Until a definite cause is found you are pretty much just conjecturing.

October 18, 2009 at 1:56 am
(5) Christina says:

I have had CFS for 3 years now. Just recently my ex-husband had a flu like incident that has left him tired and achy, with concentration problems. It’s been 4 months and he has not recovered. He has been tested for Lyme but no positive results on that test. It will be a while before he knows if he will end up with a diagnoses of CFS or not. In my mind I had already begun to wonder before the recent XMRV information.

So am I a Typhoid Mary?? If I am, I can only shrug and go on. There is no way that I could have known or even guessed in my A-symptomatic days before CFS took over my life. And God knows that I’ve been way to tired since I came down with the illness to pass it on to anyone.

On top of that there was no recognition by the medical community that it was even a real illness, no tests or even words of caution from the my doctor such as don’t give blood or if you have sex make sure he wears a condom.( I’m laughing so hard at the thought of having the energy to do either of those things!)So, I absolve my self of any guilt.

Perhaps the reason why the virus hasn’t spread any worse than it has is because those infected with high enough concentrations of the virus to pass on are those who all ready have CFS and we just can’t work up enough to engage in unsafe practices.

Does any one know the exact rise in CFS cases????? I have that it went from 47,000 cases in 1987 to 800,000 in 2006.

October 18, 2009 at 3:33 pm
(6) Liz says:

Based on the evidence so far, I do believe it is a transmittable virus, XMRV specifically. I feel like it explains a lot, including the “outbreaks” of CFS in certain areas as well as the flu-like symptoms of CFS and how it can strike people from many different demographics as well as different ages.

However, like with just about any virus, some people fight it off without even a symptom. For those of us with CFS, it appears that are immune systems are particularly bad at fighting off this virus. That much of it is very likely genetic for most of us.

Also, remember that viruses often have incubation periods where those infected do not show many if any symptoms. Consider another retrovirus, HIV, which can take years to develop into AIDS. This incubation period makes it harder for people to figure out how and when they got the virus.

I think Ms. Dellwo has done a good service in writing this article. We might not like the conclusions or feel comfortable with what is left unknown, but people do need to get their heads out of the sand so they can do what they can to avoid transmission. I, for one, will not be donating any blood until we know more. For those who are dating, it would at least be wise to use condoms. For close relatives, it may already be too late to avoid transmission, but they can do what they can to minimize risks. This has prodded my husband to help change his diet, since cruciferous vegetables lower prostate cancer risk significantly (and this virus has been linked to prostate cancer as well).

Also, I think we all need to be honest with each other about how this news comes as a mixed blessing. Much of the other coverage has portrayed this in a overwhelmingly positive light. And indeed, I am glad to see more progress. However, while the news has left many people thinking, “Yay! No more stigma about being lazy or crazy!”, a lot of people, myself included, are left thinking, “Yeah, but is the stigma of having a contagious disease I wouldn’t wish on my worst enemy any better?! Especially if I could give it those I love?!” I even hesitate to tell people I know the news because I’m not sure how they’ll react.

But again, I would not rather have my head in the sand and I think it is irresponsible. It is just that we need to talk about these things and come to our conclusions and, yes, go through something which perhaps resembles the classic “stages of grief”. I know I have. And it’s good to have others for support right now.

October 18, 2009 at 10:51 pm
(7) Mark says:

Ms Dellwos “commentary” on XMRV is a perfect but unfortunate example of the sloppy and undisciplined “opinion” that is so common today. When we accept such breezy commentary as intelligent conversation down the slippery and dangerous slope we go. The “story” of XMRV which is at its VERY infancy is going to prove to be a very very complicated one. This is something that all of us SHOULD understand and it should go without saying. And yet, weve come to this point in history where someone can just put together a little piece that takes a minute or two to write and less time to think about, and actually have it taken seriously by………too many people.

First, the Whittemorre Peterson Institutes research, at this stage shows a POSSIBLE LINK between XMRV and Chronic Fatigue Syndrome and no more. As many more disciplined and thoughtful scientists and researchers have already cautioned, the research that was done, does not in any way prove at this juncture that XMRV CAUSES Chronic Fatigue Syndrome. Period! It is very possible that this is yet ANOTHER of many viruses that have come before XMRV that has an affinity for infecting those with CFS because the illness itself may weaken the immune system causing infections to take hold that may not take hold in a healthier person. It may be that XMRV works in concert with other viruses or infections in those with CFS ans is not the sole or primary cause of CFS. It may be a virus which is merely going along for the ride in CFS sufferers and not only does not cause the illness but does not contribute to the symptoms of a CFS sufferer. And here we have someone “commentating” as a blogger with some supposed authority on how we need to take precautions for this CFS causing infectious agent!

Second, the Whittemore Peterson institute has made no comments except to say that their research indicated that XMRV (a virus which MAY NOT CAUSE CFS or even be a serious contributor to the illness) IN A TEST TUBE it looks like it might be transmissable. This is a far cry from knowing whether this newly discovered virus (which has only a LINK to CFS at this point) is easily transmissible between persons in the REAL WORLd. The truth is that, after 25 years, there is not one study explaining the transmissiblity of CFS, whether it is transmissible and if so how, and if so at what rates, or what factors are involved which make transmission more likely. Not a single study.

To tell a personal story. I have had CFS for over ten years and am being treated by two well known CFS physicians who have been treating CFS patienst for two decades. Between them they have seen and treated THOUSANDS of CFS patients. I asked them both, “Have you had any of your patients come to you with a story that they felt they gave their illness to a sexual partner, a wife, a husband, girlfriend, boyfriend. They both told me no. They had not heard a single patient tell such a story in twenty five years. That to me is very strong anectdotal evidence that CFS is, if sexually transmissible, not easily transmissible and in fact possibly very very rarely transmissible sexually. Many of these CFS sufferers were likely married or were in relationships which were sexual and which likely resulted in regular unprotected sex, and yet, not one story heard by either of these two CFS specialists regarding a transmission between a CFS sufferer and his or her partner. Again no studies have ever been done on the infectiousness of CFS. The Whittmore Peterson insitute which has done this intitial research on XMRV has absolutely no REAL WORLD data to ascertain the infectiousness of CFS OR their newly discovered XMRV virus which, again, has only been LINKED with CFS at this point. And yet here we are talking about taking precautions against transmission for a virus we know so little about, which may not even cause CFS, and in regards to an illness which we have no data as to its transmissiblity or infectiousness via sexual behavior, and to which, in my opinion, the anecdotal evidence points to an illness which is rarely sexually transmitted at best.

Third, there ARE credible stories of CFS cluster outbreaks throughout the country and around the world. My understanding is that these cluster outbreaks which took place mostly in the Mid Eighties through the mid Nineties have decreased dramatically over the past fifteen years. Unfortunately the CDC never took these reports seriously which is a very long story in and of itself, and the research on these clusters was never done. These cluster outbreaks strongly suggest that at some point in CFS’s history it was transmissible through CASUAL Contact but that, seeing as these outbreak stories have decreased dramatically over the years, something has changed and it is no longer infectious in the same way or to the same degree. And again, sadly, no research was or has been done subsequently on the these previous “outbreaks” nor has any research been done on the transmissiblity of CFS currently via either casual or “body fluids only” contact.

Its Ms Dellwo’s shoddy amateurish commentary masking as informed opinion, even to some, actual “journalism” which is so dangerous to all of us CFS sufferers.

I have suffered enough at the hands of the misinformed public and ignorant medical establishment. Please do not peddle such dangerous thinking to the masses and turn my illness into something to be feared when, at this juncture, there is not enough evidence, to make such “warnings”. I read this garbage and I think…..I need to start my own blog!!!

October 20, 2009 at 7:37 pm
(8) Adrienne Dellwo says:

Mark,

If you’ve actually read any of my coverage of XMRV, you’d know that I’ve repeatedly pointed out that this is a possible link, not a cause. I’ve also never said that ME/CFS is transmitted through bodily fluids. However, several credible studies have shown and confirmed that XMRV can be transmitted through fluids. I hope you’ll re-read my posts and see that I’ve actually pointed out exactly the things you have, and that I have never made the statements you say I have.

I’m not surprised that we don’t have high rates of ME/CFS transmitted sexually. First, if XMRV does turn out to be a major contributing factor, it’s certainly not the only one. We already know that many people without ME/CFS carry XMRV. It may be that they have a better genetic or immunological response to it, or lack predisposing factors.

While your doctors may not have heard of direct transmission, I’ve spoken to several people with ME/CFS who’ve wondered about the possibility of sexual transmission because their partners have become ill, while other people around them have not — suggesting a bodily fluid transmission. I hear from a lot of couples who both have developed FMS or ME/CFS during their marriage. Is it environmental? Is it transmissible? If so, HOW transmissible? Yes, we’re a long way from answers (as I’ve repeatedly pointed out), but if nobody asks we’ll never HAVE answers — and we may end up with a lot more people infected with XMRV, who could be therefore more likely to end up with prostate cancer, ME/CFS, FMS, atypical MS, and who knows what else.

Additionally, I didn’t say that anyone needs to take precautions. I merely asked the same questions that researchers are asking in light of this research. I’m not the first or only one to raise these questions — they are ones that need serious consideration.

October 19, 2009 at 9:10 am
(9) kim says:

Amen, Liz. I’ve been going through those ‘stages of grief’ too. You are very right about the ‘mixed blessing’ of this news.

I’ve had many a flashback this last week to the early days of the AIDS epidemic – not least in the pathetic responses of the CDC (‘a wake-up call to the CDC’? surely you jest). Obviously there are major differences. We aren’t dying like flies, thank god, as AIDS patients did back then, and still do in other parts of the world. But a retrovirus is a scary, serious pathogen, fully worthy of our worry and caution. This is not a ho-hum, common, ordinary virus like influenza. There are only two other human retroviruses in existence (HIV and HTLV-1, which causes leukemia) – discovery of a third human retrovirus is big news in science – and the majority of known retroviruses in animals directly cause cancer. Um, let’s see, between AIDS and cancer, kinda makes me wish CFS/ME really was just a mental illness! Too late now.

And I would suggest that Mark owes Adrienne Dellwo an apology for his 7-paragraph, insult-laced outburst. It was highly responsible for Ms. Dellwo to bravely ask this question. We need to think about all possible variables at this point. Mark’s rant is just offensive. The ‘shoddy amateurish commentary’ on this thread was not the one written by Ms. Dellwo.

October 19, 2009 at 9:45 am
(10) hope says:

ME is sexually transmitted? I can’t believe that. I am now 27 but was diagnosed aged 13. I had never even kissed a boy let alone had sexual contact. Also I wasn’t breast fed. So I can only be puzzled if this turned out to be true. I recently met other sufferers at a clinic and half of them were only children when they contracted the illness. Going slightly off topic, I would like to issue a word of caution to anyone considering alternative treatments. I wasted 600 pounds on hypnoanalysis and it was a complete con and has left me traumatised. So anyone out there please don’t consider that route. I’m currently on a mission to find other people who have experienced this con, especially in the Southampton, Hampshire. UK.

October 19, 2009 at 10:46 am
(11) Liz says:

@hope

It MAY be sexually transmitted, but that doesn’t mean that it or the other ways mentioned are the only way!

Also, even if it IS sexually transmitted, that doesn’t mean the other person is likely to catch it OR that it will be able to take hold in their system OR that it will cause CFS OR that it will cause CFS or other problems soon after infection. As Ms. Dellwo has said, there are A LOT of unknowns.

@mark

I think we all realize that this is only the beginning and that we don’t have all the answers. Having CFS, I’m sort of used to that — as I’m sure others are. Ms. Dellwo did us a service by voicing the questions that are on the minds of many, myself included. I do not see her as one making pronouncements from on high, just reminding us that — considering how little we do know — we need to act responsibly. At the very least, we need to get informed of what we know and what is probable so that we can make conscious decisions about what we can do.

And to everyone,

Just a thought…

Something that may actually help our sexual partners out is that studies show humans tend to choose sexual partners based on odor cues that tell us whether or not their immune systems are similar to our own or not. Ideally, you choose someone with a dissimilar immune system. That way, your children get the best of both worlds, or at least if you have multiple children their immune systems vary enough that they’re not all wiped out by the next plague.

I DO NOT KNOW if this would apply in this case, but I would not be surprised if we tended to choose partners who did not have the same immune weaknesses we do that make us susceptible to this particular virus (again, IF this is the cause of CFS). But, if you think your partner smells good, then maybe you have something to be hopeful about. (Note: according to what I’ve read, this doesn’t seem to work as well when women are on hormonal birth control since it seems to screw up their smell and their abilities to choose.)

October 19, 2009 at 3:12 pm
(12) Kevin says:

A retrovirus alone, spread through sex, blood-transfusion, breast milk, or IV drug use does not explain apparent outbreaks of CFS where transmission could only be explained by casual contact, i.e., transmission via saliva, respiratory droplets, or fecal-oral route from unwashed hands. A possibility is that a reactivation of XMRV is triggered upon infection with another virus.

October 20, 2009 at 3:21 am
(13) Kathy says:

I can’t help but wonder if the mode of transmission is via field mice. WPI reports field & lab mice are the primary cariers but don’t know how it was transmitted to humans. Is this virus shed in the mice’s excrement? Do we then inhale it? That to me would make perfect sense and would explain outbreaks if there were over-populations of mice in particular years. That IS how the hanta virus is transmitted.

October 20, 2009 at 1:47 pm
(14) Banda says:

Adrienne, I 100% appreciate your blog and all you do to share information/discoveries/possibilities with others that are suffering from Fibro and CFS. I think the majority of your readers (excluding 1 apparently) understand that this is a BLOG and you are not publishing something in a research book as fact. That being said…keep up the great blogging!
I have always believed there to be a link between a virus and CFS/FMS, but I think it’s completely conditional depending on how your bodies and minds handle things. I was unfortunate enough to contract an STD from my husband, and I had a severe reaction that caused me intense pain for 4 weeks. All the physial pain and suffering, as well as the mental stress sparked neuralgia which eventually sparked Fibromyalgia. I’m not saying that XMRV caused FMS directly. But I strongly believe that something viral could play an important factor, along with many other situational factors, in leading to FMS and CFS. (other factors like: digestion/toxins, stress, etc, which all ties into your body’s defense against viral diseases – go figure!)

October 21, 2009 at 11:53 am
(15) Liz says:

@Kevin

I haven’t read ANYWHERE that those are the ONLY ways it could be spread — though those would probably have the best chance of transmission. Just because it is a retrovirus like HIV doesn’t mean that is transmitted in exactly the same way. And it has shown up in saliva.

Based on what I’ve read, I believe that transmission may very well be possible via saliva but that there is a reduced risk compared to, say, a blood transfusion. On top of that, I believe that many people are able to fight it off easily at such low quantities without any noticeable symptoms.

Also, there may be a time period (or periods) where the virus is more easily transmitted, whether because there are simply larger numbers of the virus or because of some other factor that increases viral shedding.

October 21, 2009 at 11:09 pm
(16) kim says:

I read something this morning (can’t remember where at the moment, and away from my home computer) that the researchers discovered live XMRV in the saliva of some of the patients.
Sincere apologies for posting this with lack of citation, but I took note of the finding because it was a reputable source.

October 23, 2009 at 3:45 pm
(17) Karen says:

Hi, Is it possible that the virus goes from mice to cats and then to humans? Cats lick themselves all over. A saliva borne virus could easily be transmitted to human in this way.
Precautions:I have told my daughters that we can no longer share a razor. I already try to practice Universal Precautions.
Another thought I’ve had is that three parents in a local GS troop had CFS or other immune dysfunction diseases. This troop camped a lot.3 out of 12.
Lastly, among my childhood friends in a one block area of my home, there are 2 CFS,1 Lyme and 1 MS diagnosis, that I KNOW of. That’s weird.

October 23, 2009 at 5:15 pm
(18) judson says:

First of all this virus has been previously studied and identified in other cancers… that’s why the national cancer institute was involved.
Also… take into account that the study done on men with xmrv and prostate cancer had a genetic defect in the Rnase L pathway (and were of a particular Irish descent I believe) – this is an important immune factor. Its quite possible that only some people carry the immune defect that allows the virus to develop into a full blown disorder. About 3% of the healthy population in these studies carried the virus with no issues. As to myself, I would have dismissed the transmission theory, but a friend of mine from college two years back just called me and told me he had a strange flu like illness that had affected him for months just about the time mine started. He lost a TON of weight… a lot of his symptoms were similar to mine. Who knows?
… Who knows how long the incubation period could be? Who knows how long it stays dormant? HIV can stay virtually unnoticed for years until it suddenly develops into full blown AIDS. I think there is some complicated work to be done yet, and I think that these are appropriate questions to be asking.

October 23, 2009 at 5:18 pm
(19) judson says:

@Karen… Yeah that does seem weird…. We have over a dozen stray cats that have taken over our neighborhood and they are constantly killing small animals and rodents… I wonder somehow if the Murine part of XMRV will ever be related to secondary contact with rodents.

I mean…. The plague was spread through fleas carried by rodents. They’re really disgusting little creatures…. Just sayin…

October 23, 2009 at 6:31 pm
(20) Susan says:

Who knows really? When I got sick I was not in some epidemic cluster and I had an extremely acute onset. Maybe there are variations re: mutations if this turns out to be causal–it is indeed a puzzled.
For me, while no one got sick at the same time I did (that I knew (although it was at about the same time as the outbreaks in other parts of the country), a year prior to getting sick, I was involved with a guy when I was in grad school and he had a mono illness so bad that he had to drop out for a semester. In fact, while in class one day, he felt so bad, got up and went to the bathroom and fainted. So, yeah, I’ve wondered about that. Also my husband was sick for over 6 months after we’d been married for a year or so and the doctors said it looked like some kind of mono-illness. My son also has a milder form (than I do) of CFS (but with very objective signs and problems.)
Do I think the CDC will do anything? At this rate on their post they have ***NEW***treatment for CFS and it is CBT and graded exercise which is so stupid. Sounds like how the UK views it. Even with all the immunological studies and dysfunctions that have been documented by top-rate researchers in this country and others, I don’t see how the CDC can get by with this. Especially with concerns re: blood supply, etc. To not do good science themselves is just pitiful. Because CFS is kind of a catch-all, it would be easy for them to hand-pick patients with no immune dysfunction, but with fatigue, those who are depressed or personality disordered and say, look, it’s all psychological. If they do that, it will be outrageous. Anyone who does have documented CFS should get together and file a class action suit if possible.

October 23, 2009 at 6:35 pm
(21) Caroline says:

I am so upset and concerned, that I don’t know whether I contracted this ‘virus’ immediately after giving birth to my twin babies (when I had to have 5 units of blood), or post hysterectomy, by which time they were 5 1/2 alredy. Have I planted a time bomb for 1 or both. They were both breast fed,although or son was fed for lonegr than our daughter. Is there any way I can find out whether they will be OK? Even if this means trips to the U S from the UK, I would be prepared to do this. Of course the other problem is, what could we do about it, even if I do get answers for them, is there any way of preventing either/both developing this debilitating condition?
What a NIGHTMARE, for all of us sufferers who are also Mums.

October 27, 2009 at 9:36 pm
(22) Adrienne Dellwo says:

Caroline,

As a mother, I definitely understand how you feel. Unfortunately, right now there’s now way to say whether they have the virus, but researchers are working to get a diagnostic test out as soon as possible. Remember that it likely takes more than XMRV to trigger ME/CFS, so hopefully your children don’t have/won’t have the other risk factors. For now, about all we can do to protect our children is keep them as healthy as possible, and make sure when they do get sick that they’re treated promptly and properly. Hopefully we’ll know a lot more about this in a couple of years so that we have more tools for protecting our kids.

October 23, 2009 at 9:00 pm
(23) Susan says:

Caroline,

I understand your concerns completely. Your children might do just fine, though—-remember they got another whole half of genetics from their dad and you don’t know how it will play out IF it was passed to them somehow (even if it was—and you don’t know that it was.) You WILL know, though, if they get sick because the pattern will be unmistakable. However, that said, every time they DO get sick you can’t imagine that they have CFS or you will do no one (including yourself any favors.) What you would see is a pattern of similar illnesses repeating themselves (such as my son getting mono over and over and starting around 7.) He also had non-stop strep infections prior to that for a couple of years. And so on. EVEN THOUGH, he has to deal with this, he had GRADUAL onset which is very different from acute onset (which I’m assuming you had.) The gradual onset (as long as the child doesn’t overdo—and this would be later as a teenager and young adult—then things can stay sub-clinical or not full-blown. The best thing you can do for your children is to treat them totally normally now and try to let go of your fears as much as possible. Make sure they get enough rest, have good meals—the usual things you would do anyway. My son found out early on that there were things he “didn’t like” (as he would put it) such as soccer or football because it was too strenuous. I KNEW it was too strenuous for him because I could see how it was affecting him physically—that he did not have the endurance and would feel ill— but I let him figure it out. He simply said, “I don’t like that sport” and wouldn’t play it. Instead, picked up things that are more under one’s control and pacing such as tennis and swimming. With my son it became clear to him that he had similar things that I did but in a different way (he would bounce back after being sick with something in a way that I do not.)
If you had to come to the US to see a doctor here at some point, then it would be well worth it, but you aren’t there at all at this time. I know it is worrisome but the best thing you can do is take care of YOURSELF and enjoy your children the most you can. Don’t hesitate to get help in taking care of them. I can’t imagine having CFS and having to take care of two children. I feel more concerned for you than for them!
I had to have help in taking care of my son when he was very young. He does have memories though of me being sick, lying down and then getting up and carrying on—so while he knew I had a medical illness, I think the way I handled it helped him in terms of how he conducted himself later on and also it helped me in pacing myself in taking care of him. My neighbor helped a lot. As did my husband and parents.
Enjoy your kids! Hope this might help!

October 23, 2009 at 11:08 pm
(24) Keith says:

I Was part of a cluster outbreak of cfs in 1987. My whole family cfs started after an initial infection. The four of us have been sick for 22 years. I think it will be found that this virus in the beginning of peoples infections can be transmitted in the blood of saliva or saliva. This is the only thing that makes sense to me on how clusters in families have occured with this illness. Perhaps after the initial hit from the virus it hides out somewhere else in the body and becomes less infectious. Just my own personal hypothesis.
Also interestingly the WPI has stated 40% of the autistic cases they have tested test positive for the virus. I have had 2 boys and both are on the autism spectrum. I wonder if there is a connection.I have had communication with doctor Bell and he says he has heard this before and it needs to be looked into.
And to Marc. This is a Blog forum not a scientific journal. People are free to write there opinion and you are free not to read it.

October 24, 2009 at 9:55 am
(25) Annie says:

The blood transfusion during surgery sounds likely to me. I developed CFS and Fibro after a long (5 hour) thyroidectomy. I never recovered from that surgery and have always suspected that something about the surgery brought on my CFS and Fibro. The possible confirmation of this is comforting to me.

October 24, 2009 at 11:24 am
(26) Sabine Cannon says:

Anyone else scared of XMRV?

Never in my life will I forget the minutes, the seconds, when i was reading the New York Times article my daughter had forwarded me.
I felt nausea, my throat seemed to tighten and I felt shaky.
I must have stared at the article at least 30 minutes!
I did not like it – but I knew it was very likely true.
Actually, something I had been waiting for, for almost 25 years.
I had always hoped I would live to hear the answer to this puzzle.
And somehow, I guess, I assumed, I would be happy at that moment.
Don’t ask me why.
I mean what was I expecting?
A very hidden vitamin-deficiency, easy to treat with the right supplements?
A bacteria, sensitive to a certain combination of Antibiotics + something?
A certain mycoplasma?
Off course, that could not be!
Just as dramatic and horrifying as the disease, the cause had to be!
Why did I not foresee that?
And why is this brilliant scientific discovery not filling me with joy?
Validation? I turned my back to worldly opinions many years ago.
Treatment? Why do I not rejoyce at the idea of Anti-Retrovirals?
Why does the similarity with HIV worry me?
Why do I feel that millions of families might have deep trouble with the question of transmission alone, not to mention a constant concern to not infect anyone else?
Why does a Retro-Virus similar to HIV seems to me as nightmarish as the illness itself?
The match then is perfect as far as human suffering is concerned!
So perfect, that I would reconsider my complaints over my non-validated, non-proven, not-explainable, and, yes, worsening, illness.
However, I do see it, like a dramatic cloud just rising afar, no, in front of us, no, better, among us!
Am I the only one horrified of this medically and scientifically brilliant discovery?
I see a big monster surpassing it’s sibling HIV.
XMRV looks much bigger to me!
There again is that feeling I had at first.
XMRV – can I trade you for a metabolic disorder?
Genetic defect?
It seems, I cannot, not anymore.
But, Jubilant, I can’t be – with XMRV

October 24, 2009 at 2:27 pm
(27) Liz says:

Yes, Sabine. That is EXACTLY how I’ve been feeling.

I’ve waited and waited for such a breakthrough, and I think deep down a virus like this made the most sense, but I REALLY hoped that it was something else, something that I could overcome a lot easier. As much as I hate how people say, “You should just eat/sleep/exercise better”, part of me really hoped that was true, even though it never seemed to make any difference. I still had hope, though, that I’d “get my act together” and do ever better with those things, get over some invisible hump, and then be cured.

And as much as part of me wants to share this with everyone I know, and especially the doubters, to help the “it’s all in your head” stigma, I quickly realized that I need to be careful how I do share this and to whom because now people might see me as contagious with the horrible disease it is. And I want to be responsible about not transmitting it, but how cautious can/should one be with so many unknowns? I’d rather be safe than sorry, seeing the huge consequences if I make the wrong choice, but I can’t live my life in fear, either. And, without telling people what I’m concerned of, I’m afraid that certain safety precautions will make them think that I’m scared that THEY have something (though, I guess because of the immune problems I SHOULD worry about that, too).

I know the news scares my husband, even though he’s still very supportive. It scares us both that he could catch it — not just because we’d both hate for him to have to endure it, but because his job is our sole income and I’m not eligible for disability (not enough work credits). Fortunately, partner to partner transmission does seem relatively rare, but it is not unheard of.

October 24, 2009 at 4:10 pm
(28) eaglehaslanded says:

My own doctor suggested I may have contracted a Fibro-type virus…..she refered to as a “germ”…. while coming into this world through the birthing process & my own Mother could have had it or carried it. I know I’ve had Fibro. & CFS most, if not all of my life.

October 26, 2009 at 2:21 pm
(29) Joe says:

The only thing I have to say is after I got sick and so very tired, I lost all desire for sex so if I passed it on sexually to someone the virus was not active yet. I hope I didn’t infect anyone with this damn disease. I often wonder if life is worth living while you feel this sick and are hurting this much.

I had a stubborn doctor and all of the tell tale signs but I guess he didn’t believe in Chronic Fatigue Syndrome. I wish all of these physicians that don’t believe in CFS have to suffer with it for a month or two.

October 28, 2009 at 5:40 pm
(30) Leona says:

Sabine,
I agree that this news is not the joyous news we hoped for. Like you, I’d hoped for something easy to cure being the cause of CFS. If it turns out that this retrovirus is at the root of our illness, then the news isn’t good.

But it isn’t reason to hang our heads and flaggellate ourselves either. With this illness, we make the best choices we know how. I didn’t care for myself the first two years. I pushed myself until I drove my body to being almost bedridden. Then I found out the better you treat yourself the first two years, the more likely a recovery is.

I married, had a daughter and breastfed her. I thought it was the best thing I could do. If I gave her the virus– well, I can’t undo it now.

I can’t change the past, but I can change the future.

I think we would be wise to not donate blood or any organs. I thought that before this news came out. We don’t know how this disease is transmitted, and as others on this thread have said–I wouldn’t want my worst enemy to have this.

For those with a lot more energy than I have, if you have sex, consider using protection, but don’t stress over it. There are very few cases reported in sexual partners. But there are some- so be cautious.

Even if this doesn’t turn out to be the cause, we should be careful. Our disease spreads somehow. I don’t want to let it spread to another person if it is in my power to stop it.

October 29, 2009 at 2:24 pm
(31) Di says:

I think we all need to slow down and wait for the researchers and those with the knowledge before we start making assumptions.
It is totally ridiculous and counter productive to waste our energy focusing on something that is in such an ‘infancy’ stage of research.
I like all others with fibro and CFS hope for something that will bring about a cure but I think all of this discussion filled with assumptions is harmful and we all need to stop, pause and think.
Wait for more research and more studies that provide us with answers. One research study is insignificant in the health care field and is only that “one study”. It may lead to something else but at this point in time we need to wait and rely on those with the knowldege to keep us informed and to keep us from making assumptions that can be harmful and destructive to some.

October 31, 2009 at 4:46 pm
(32) Arleen says:

I have been married for 54 years and have had CFS for over 40. I had one child born after getting CFS, and I nursed him. Neither my husband or child have everhad any signs of CFS.

November 1, 2009 at 2:30 pm
(33) synapse13 says:

Jenny SRP
Doctors say it’s contagious because they have been told this for years. The truth is there is a mountain of evidence for this illness being contagious. Although it may be that it isn’t always EASILY casually contagious. Another factor that is probably more important is the factor of animal contagion. Look up the work of Dr. Tom Glass, a veterinary pathologist for info on this. In my case, I found a very ill cat under my house and within 8 months, I was sick. I do not feel that it is a coincidence that many of the pathogens that have been linked to this disease are also carried by animals and that ME patients have an overwhelming amount of contact with animals.

November 1, 2009 at 2:46 pm
(34) synapse13 says:

Susan-
You hit the nail on the head. The CDC’s “empiric” case definition specifically includes people with mental health issues and excludes anyone with any signs that point to physical illness (spots on MRIs or any other thing the tends to show something other than psych issues are happening) and so their studies are not necessarily on ME/CFS. Dr. Leonard Jason has shown the this case definition actually picks about %40 mental health patients with depression caused fatigue. This is the famous “Type 1″ patient described in Osler’s Web and it’s basically a self fulfilling prophecy. If one thinks that CFS is mental illness and one defines the illness in such a way that it fulfills one’s own preconceptions, then all one will find are peope with mental illness and fatigue. It’s as though these idiots have never had any understanding of epistemology (the study of –literally– how we study things.)

November 1, 2009 at 2:53 pm
(35) synapse13 says:

I’d also like to add that we should keep in mind that, considering the success of folks using Valcyte, it’s likely that treating the “other” viruses besides XMRV is a possible help since it’s likely that XMRV works in a manner similar to HIV in that it doesn’t do much of the actual damage but instead allows other viruses to do the heavy lifting. In AIDS patients, researchers do not find HIV in the most affected organs on autopsy; they find HHV6, mycoplasma, and others. These retroviruses are most likely “enablers” in a sense of other pathogens.

November 3, 2009 at 12:37 pm
(36) Worried MUM says:

How did I get it?

My paternal Gran had MS(label) did she have XMRV and pass it to my Dad, my Dad wasn’t a bundle of energy, but he was never sick, he died age 54 due to faulty medical equipment.

My Mums sister had very similar symptoms to many of mine, she died age 54 asbestos cancer.

My 23 yr old daughter is having symptoms.

I have an autistic daughter.

From birth to 5/6 I was ill, tiny was hospitalised for long periods and kept in isolation (in military hospital).

I have baby grandaughter.

I am terrified of what I may have passed on to my children and grandchildren.

I find it so hard to imagine that I don’t have the XMRV virus.

My partner of 20 years has great health. My X the father of my children is not a bundle of energy but is generally well.

November 8, 2009 at 11:01 pm
(37) MiMi says:

Interesting findings….my husband had birkett’s in 1994 and was treated with chemo and radiation….the doctors did not know if he would survive….he did and I got CFS in 2005…I also have FM…I have 3 children whom I nursed…so this presents a lot of questions for me…could I have gotten it from my husband? Maybe…have I passed it on to my children….maybe…I have a son who has a mental illness…and a daughter who also has health issues…could all of this be related…could be..but I am sure that I will never know for sure.
Nothing is simple in this life…I could worry about all of the ifs and whys and I would not be any better off…so I will leave this alone and hope for the best…I do wish someone would figure out how to help this illness…I hate living like this and I can not even imagine why doctors would think that we like having these health issues…

November 9, 2009 at 3:45 pm
(38) J says:

Transmission of XMRV
They say the XMRV originated in mice.

There’s a lot of research going on about how SALIVA from animals like CATS transmits RETROVIRUSES. See for example: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=rv&part=A4818

So, if you have ever seen a cat carry a mouse in its mouth … you know how the CAT could then have SALIVA with the RETROVIRUS.

How many small children or adults have EVER BEEN KISSED OR LICKED BY A CAT?

A) They need to include SALIVA in the list of transmission medium for retroviruses

B) They need to admit that retrovirus transmission from animals to humans is topic of intense interest these days. It happens, and it is a health concern.

C) They need to stop feeding the public with misleading information. They do this by limiting the means of transmission to only human forms of blood, semen, mother’s breastfeeding. What they are then indicating is that there is some sort of parallel between CFS and AIDS or CFS and using drugs with dirty needles. If they were more honest, they would disclose the possibility of transmission by saliva, even from a housecat, thus being clear that having CFS is not evidence of risky behavior. Risky behavior identity causes shunning in some parts of society, including close circles of friends and family.

CFS victims donít need any more misguided isolation. Theyíve had decades of it. Letís put a stop to it.

November 10, 2009 at 6:19 pm
(39) kimmir says:

i am a believer, i have both cf and fibro, and was told they were tied in with my celiac, the one thing i have noticed is that mine gets worse when i have an illness coming up on..or maybe thats the illness..now i understand and hopefully will be able to find a dr. to help me with this, cause boy do i need it…i am sick and tired of being sick and tired…

November 13, 2009 at 5:21 pm
(40) Liz says:

J,

You said:
“If they were more honest, they would disclose the possibility of transmission by saliva, even from a housecat, thus being clear that having CFS is not evidence of risky behavior. Risky behavior identity causes shunning in some parts of society, including close circles of friends and family.”

Yeah… because having a horrible disease passed through saliva won’t cause any shunning! /sarc

The fact of the matter is, we don’t know how it is spread yet with any real certainty. Because it is a retrovirus like HIV and present in the blood, it seems likely though that at the very least it would be transmitted through those ways that HIV is transmitted. I think it is responsible to say that people with CFS should stop donating blood till we know more and at least consider using condoms, particularly if they have multiple partners.

But to go beyond that? That I think would cause more fear than is currently warranted.

And as for cats… yes, animals can transmit some viruses, but not all are good hosts for all viruses. Occasionally, viruses do mutate and jump to new hosts, but it is relatively rare and why we don’t worry about being licked by a cat with a virus like feline leukemia. I have heard absolutely NOTHING to suggest that XMRV is transmitted by cats. If you have heard otherwise, though, please feel free to point us to relevant studies.

November 14, 2009 at 2:39 am
(41) littledove517 says:

I was an eight month baby. I was sick off and on. By the time I was 13 months I had to have a blood transfusion, due to a kidney problem. By, the time I was six I had a chronic nerve problem with my stomach, by age nine I had Rheumatic fever, and became tired after that, then at age 14 I had chronic Mono. This got me down for a good while. I got married at 18, which was my first sexual experience. But, I already had the fatigue and the fibro pain, but back in the 60′s and 70′s, even 80′s we were all syco patience any way. I could never hold down a job for being so tired to the point of throwing up with the loose stool’s, and weight loss, and was in the hospital more than work, with them trying to find out what was wrong. So, I gave up working a long time ago. In 1994, I became very sick after a bout with broncitius for 10 month’s. I went to the Dr. again and was told all of the symptom’s, was in my head. Then after I went home I was so tired I threw up and went to lay down, and then i was unable to get up. I could not turn over, brush my teeth, feed myself, and all the other thing’s. I lost 32 lb’s in one month. I thought I had cancer. I finally found a female Dr. who under stood. Well, I found a Dr. who understood, then my husband left.
But, all said, I had all the symptom’s and the illness from a very early age, before any sexual experience. Unless, it is transmitted through the birth canal. My daddy was always very tired, and my mother alway’s had quite a bit of pain and has fibro. she may have cfids but a mild case.
Now, my two brother’s and sister have fibro. and I have cfids\fm.
I don’t know if I contacted this through the blood transfusion at 13 mos. in 1952, when things were not as up to date as they are now.
So, I just pray they will find something that will help us all either get well, or at least help us to feel half human, ever how that is!

November 15, 2009 at 5:53 am
(42) Laurence Swift (retired vet) says:

Aerosol transmission of M.E. (XMRV, CFS) is well documented in Osler’s Web (page 26 on, 1st edition) It was 1995 at Tahoe-Truckee High school. The overcrowded school gave some of the teachers a cramped room, in which staff had to take lunch and coffee as well as prepare lessons. To save money on heating, a recirculating ventilation system was installed, and the windows were kept firmly shut. Out of a group of 7 teachers using this smokey room, 6 fell ill with the disease over a period from January to April. The one who didn’t catch it had found the fumes in that room too much to bear and used to drive his pickup camper to the lakeside, brew coffee there and do his lesson work. The author, Hillary Johnson, didn’t say it in as many words, but clearly implied that this showed an infectious cause, probably not rapidly contagious, which was concentrated in the fumey atmosphere of the small staffroom. In the previous outbreak at London’s Royal Free hospital in 1955, it was again mostly the staff that were affected. I suspect that a similar situation applied, as patients lived in airy spacious wards, but the staff were probably tightly cloistered during breaks. Someone could investigate this.
Personally I believe I caught the M.E. virus in a sort of sexual way. My marriage having broken down, a girlfriend from a previous life made a comeback. We started an affair which was initially straight sex – no problem. She had had “depression” problems in her earlier life. Then she arrived on Valentine’s Day and stayed 5 days. I began giving her oral sex – much more body fluid potential – and on the day she left, I developed severe flu signs, headache, coryza.
I expected that I would simply recover from this “flu” but didn’t. The headache was 24/7 and very oppressive. I did my best to keep working – I had no choice, I had started my own successful veterinary practice in 1984, and my family, staff, and mortgage all depended on it. I adapted; I devolved all the paperwork to different nurses; I reduced my workload by changing to an appointment-only system. As a vet I’ve always diagnosed & treated myself for minor ailments and never see the doctor, but after 3 months I finally saw him. He may not have heard about M.E. but he gave me anti-depressants and painkillers. Did no good. I had a mild IBS which actually stopped after the first 19 months. The only thing that relieved the headache was large doses of chocolate, but I couldn’t keep this up. After 3 years the headache diminished and I have improved slowly since, but I still have limited energy and need to take naps during the day and evening. The clientele reduced itself to what I could cope with, and built up again as I improved. I tried taking on part-time vet assistants, which was costly. I moved to a larger building and fitted it with state-of-the-art equipment. However I sold the whole show 3 years ago and retired early. The new girlfriend and I split up, partly because she was a trained Community Psychiatric Nurse and didn’t think that M.E. was real.

November 15, 2009 at 5:02 pm
(43) synapse13 says:

Doh!

This should have said, “Doctors say itís NOT contagious because they have been told this for years. The truth is there is a mountain of evidence for this illness being contagious.

Sorry about any confusion.

November 15, 2009 at 5:35 pm
(44) synapse13 says:

Big Doh!

That should have read, “Doctors say itís NOT contagious because they have been told this for years. The truth is there is a mountain of evidence for this illness being contagious….etc.”

In addition, I should add that there has been a massive amount of evidence and “classical indicators” (from an epidemiological perspective) that there is a contagious element to this illness such as higher numbers of cases among those with public contact (doctors, nurses, teachers, postal workers, etc.) and the evidence I mentioned above about animal contact (Dr. Glass; 87 times the “normal” amount of contact with animals among patients and lots of sick pets, etc.) This is clearly an illness which has a casually infectious pathogen involved.
In my own case, it is making a great deal of sense that the XMRV preceded the trigger illnesses by about 8 months (I had unexplained bouts of digestive upset and diarrhea and occasional night sweats before the trigger illness) and was passed to me by this very sick cat (XMRV is a mouse virus) then when I got mono (probably from HHV6a or EBV; Monospot was positive 9 months after onset with trigger illness so I may have picked up EBV-mono later after the initial HHV6a-mono and it may have added to the illness yet again later; and I do recall getting worse yet again during that period) it probably triggered the illness overall when it went to my heart and I kept trying to exercise (which made the heart aspect worse.) With XMRV, it’s all fitting into place and making sense more than ever. It’s still a possibility that Borna is involved (since I was in Alaska at the time and animals there carry Borna) but I haven’t been able to get tested for Borna antibodies yet. I think I got mycoplasma after having a vaccine for Hep B (mycoplasma are common lab contaminants so it wouldn’t surprise me at all) and I got much worse with the vaccine. XMRV+HHV6a=initial illness+exercise= worse illness+EBV= yet worse illness+mycoplasma= yet worse again illness.

November 15, 2009 at 7:36 pm
(45) Liz says:

@synapse13

re: “XMRV is a mouse virus”

Could you point to any evidence of this? I have seen that it shares a lot of RNA with mouse viruses and therefore may be related — maybe even a descendant on a virus that jumped hosts (like the swine flu). However, do we have any evidence that it *is* a mouse virus? I.e. that it can survive in mice and/or be transmitted to humans from mice?

Guide Response: XMRV researchers have stated that the virus originated in mice. The X stands for xenotropic, meaning that it has jumped from one species to another. I don’t know if anyone knows yet whether humans can catch it directly from mice, or if domestic animals that may eat mice can catch it or pass it along.

November 20, 2009 at 5:21 pm
(46) Maggie says:

I have had full blown Fibromyalgia/Chronic Fatigue since I was 41 and I am now 53. I have only used Acupuncture. Not a cure but, it helps. I was in a commited sexual relationship for 15 years with my partner having never showing any symptoms then or now. I do however have a cousin with Fibromyalgia on the same side of the family which I share, ADHD, Asthma and a Geographic tongue. Our genes on my paternal side are very strong and wide spread. I fear a Witch Hunt mentality on the side of those who feel we are comunicable.

November 21, 2009 at 3:21 pm
(47) Sylvia says:

Here’s the mouse thing:
Xenotropic – the ability to grow in a foreign host (zoonotic)
Murine – Of mice, or from mice
Retrovirus – A virus that makes a DNA template from RNA, and inserts its DNA in a foreign host cell

I don’t think a cat lick would do anything, unless you had an open wound.

November 22, 2009 at 9:54 am
(48) sos says:

Before I married my xhusband I was active and moving around. After 6 months of living with him I started feeling extremely tired and achy. I was drinking alka seltzer 3 times a day, using claritin d and anything that would keep me moving. 2 years later I got diagnosed with fm I have not gotten any better with treatment. Every 2-3 wks I get a cold or flu like symptoms. I believe this is a tranmitted disease iin talking with other people who have cfs.fb these people admitted to being sexually active with multiple people. All our illnesses our linked to animals for a purpose. Just like swine maybe it gods way of saying find a cure. The earth is not able to handle all that we have done here. Maybe we are here to get ready for the future of our children. So we can survive. It would be very intresting for someone to review cases of of cfs, fb and do a questionare about sexual activityand see what the results are. Maybe that would help the cdc to investigate more. Or maybe a pharmacutical company. can u image how much money they could make.

December 4, 2009 at 9:03 pm
(49) roseisarose says:

It is TOO SOON TO SAY THAT XMRV is or even possibly SEXUALLY transmitted! Wait until the research proves to be a KNOWN cause of CFS, a carrier virus, or? Most of us that were infected, became ill as a result of a cluster or were children when becoming ill. CFS has been a wastebasket disease for so long, as most patients with CFS will attest that they have been relegated to by their physicians, families and the D!@&^ precious CDC. The last thing that CFS patients need is more ridicule, isolation and lack of human intimacy.
I have stayed pure and have not donated blood because I knew d#$@ well I had a virus all along!

December 20, 2009 at 2:05 pm
(50) Tina says:

I have had several good friends, my husband, and one of my sons who began to show similar symptoms where there had been none before they lived in close proximity to me. I have believed all along that this illness can be transmitted from person to person. It is interesting that as I go through my life people I know will begin to have symptoms.

December 26, 2009 at 4:35 am
(51) Julia Rachel says:

i was married for 16 years and my ex husband does not test poitive for HHV-6A, EBV, CMV or Micoplasma or XMRV. I test positive for all of the above. However, my son Blake tets poistive for EBV, HHV-6A and XMRV and has been quite ill for 5+ years. His illness started at 15 years old with a flu-like symptom. My illness started at 16 years old with mono.I breast fed Blake. I think the familial link is valid, but yet to be narrowed down. Genetic? Breast Fed? Etc…….Blessings tio all with this insidiuos disease. Thank you Adrienne for a wonderful and informative Blog! Blessings….JUlia….http://vlgonvalcyte.wordpress.com/

December 26, 2009 at 7:15 pm
(52) susana says:

I got sick after my only male child was born, (I have two previous girls) so I used to think that maybe some hormonal component was in it, also I am a doctor s wife and it is folk wisdom how doctors families are prone to serious illnesses so maybe they bring home some viruses? and used to camp in the desert(somekind of hanta or another?) I blame one of those things, being not sexually promiscous (I have only been with my husband)(ever) and very healthy when I lived in a three hundred years old plus town in a tree hundred years old house, then I came to live in a new bordertown,where maybe we dont even know what kind of things are in the soil they remove to build our houses……….

December 28, 2009 at 9:27 pm
(53) Celia says:

Hepatitis C which is transmitted easily by blood to blood contact is very rarely sexually transmitted. The same could be true of XMRV. I am hoping some of the AIDS research will help them sort this virus out at a fairly fast pace. We have waited a long time for help.

January 2, 2010 at 12:37 am
(54) Miriam says:

I have read the articles about the possibility of my FM/chronic fatigue being caused by the retrovirus with great interest. I was diagnosed with FM over ten years ago but have had related problems with pain, infertility, migraine, endometriosis, menstrual difficulties, etc. since I had mononucleosis in the 8th grade. My immune system never recovered. I became a strep carrier. I got every cold and virus that came along. The pain was, and is, that I became dependent on pain meds. This illness has been costly financially, emotionally, etc. I believe that it certainly was a major reason my marriage ended after 28 years. As for transmission, I didn’t get this from being with multiple sexual partners. There was only one. I had symptoms of these illnesses prior to any sexual contact.
I believe that a viral causational link is very likely. I, too, worry that this will cause others to fear contact with us as if we had not already suffered enough from the very illness itself. It is my hope that at least we can hope that more research will be done to hopefully find more effective treatments than currently exist. I can’t afford many more “losses” from this nightmare called fibromyalgia and the symptoms that accompany it.

January 15, 2010 at 12:00 pm
(55) Hope says:

CENSORSHIP!

January 18, 2010 at 5:02 am
(56) Iwone says:

With reference to Marks comment…I do know a married couple who both have CFIDS. However, it would take both parties to have very compromised immune systems for this to happen. Many people have strong immune systems, and I feel could live alongside this XMRV and not succombe to it.
I was just reading on a medical site that one retro-virus(HTLV-1), it mentioned that it spreads through sexual intercourse, blood transfusions & breast feeding. The latter could explain why several members of some families somtimes contract CFIDS.
If the sexual transmission is the same for XMRV, and we wish to be responsible, we really are in a spot of bother!!!

In countries where there is alot of insecticide & herbicide spraying, this often is the immune destroying factor in the scenario of CFIDS, which leads to the virus taking hold. I truly knew that I had this ‘thing’ in my system. It didn’t make sense with all the healthy eating & avoiding chemical creams & washing products, that I should feel so ill often, at my worst sleeping 16hrs/night.
I was poisoned with an insecticide and came down soon after with Rheumatic fever (Feb) ..then in May Hepatitis and then another virus which I never recovered from and CFS was diagnosed …but much later, as in the early 80′s, Drs. told you you were a hypocondriac…not to mention friends & relatives!
Somehow knowing that so many others are out there & in the same situ as I, doesn’t make me feel any better, as the reality is how do you get Dr’s who are supposed to be keen to research and learn beyond their basic training,
to listen let alone believe what we are hearing from the Whittemorre Peterson Institute, inregard to XMRV(xenotropic murine leukemia virus-related virus).
Seeing this virus has been known to cause leukemia & tumors in animals, its interesting that there is not more immediate action to assist humans from this virus taking them down that track.
Maybe there is more $/s to be made from the latter, than prescriptions for anti-viral treatments!

January 19, 2010 at 9:25 am
(57) jdel says:

J Virol. 2010 Feb;84(3):1648-51. Epub 2009 Nov 11.

Androgen stimulates transcription and replication of xenotropic murine leukemia virus-related virus.
Dong B, Silverman RH.

Department of Cancer Biology, Lerner Research Institute, Cleveland Clinic, 9500 Euclid Avenue, Cleveland, Ohio 44195, USA.

Xenotropic murine leukemia virus-related virus (XMRV) is a gammaretrovirus originally identified in a subset of prostate cancer patients. Because androgens stimulate prostate tumors and some retroviruses, we investigated the effects of dihydrotestosterone (DHT) on XMRV transcription and replication. Transcription from the XMRV U3 region was stimulated up to 2-fold by DHT, but only in cells containing a functional androgen receptor. Mutations in the glucocorticoid response element (GRE) of XMRV impaired basal transcription and androgen responsiveness. Furthermore, DHT stimulated XMRV replication 3-fold, whereas androgen inhibitors (casodex and flutamide) suppressed viral growth up to 3-fold. Findings suggest that integration of the XMRV long terminal repeat (LTR) into host DNA could impart androgen stimulation on cellular genes.

PMID: 19906923 [PubMed - in process]

Publication Types, Grant

February 1, 2010 at 11:37 am
(58) Someone with Asperger's & CFS/ME says:

XMRV is said to be a human X-MuLV, in other words
: it’s a Xenotropic Murine-Leukemia-Virus-related
Retrovirus, … in still other words, it is a retrovirus, that
is related to other retroviral diseases causing cancer
-like disease in mice, but now XMRV itself is not
causing disease anymore in mice, but it does cause
disease in other species than mice, that’s why it’s
called “xenotropic” : so it can cause disease in rats,
in cats and in humans. That’s the way I understand
it. Correct me if I am wrong.

But here it comes ! Now here is my theory : Perhaps XMRV came to humans, not directly from mice to humans, but via cats.

So perhaps the question should be :

Did XMRV come from mice to humans via cats ?

Or in slightly other words :

Did XMRV come from mouse to human via cat ?

First “from mouse to cat”, and then “from cat to
human” ?

In mice the disease is called MuLV.

MuLV may have been passed to cats first :

“MuLV from mice” to cats, where it may genetically
have transformed itself into a new disease entity,
now still causing disease in virtually all mammalians,
except in mice : a new X-MuLV disease is born, now known as XMRV. It would be interesting to know, when this happened, if it did happen at all. Did it happen at the
beginning of the 1900s, or is this something, which
has been already present for centuries and more ?

So human X-MuLV may actually have been passed
from cats to humans via cat saliva. So XMRV could
perhaps just as well be called feline X-MuLV, and not
just human X-MuLV ? Just a theory, but a plausible
one, I think. Perhaps most XMRV-infected people have been contaminated with XMRV by their own cat ?

And perhaps another question should be asked :
In exactly which species did the transformation from
MuLV to XMRV occur ? Was is in humans, which I
think, most people at this very moment will gladly believe to be the case, or was it in mice, or was it in cats, or perhaps still in another species ?

I would be very interested to know how many cats in
a group of 100 would be carrying XMRV. Would it be practically all cats, or just five percent or so, or would no single cat have XMRV ?

Perhaps XMRV has been in cats for centuries ? Who
knows ? Perhaps all cats get infected with it in the
long run ? I am sure that most people would like to
think that cats do not carry the disease. Most people
may think that only humans do. But at this very
moment, scientists are not even sure whether XMRV
is present in humans in Europe, or not. I think XMRV
is spread all over the world in humans. And I think
that we need an answer to the question whether the
disease is also present in cats or not, and if so, what
is the prevalence of XMRV in cats.

The question is ligitimate, because if XMRV is present in cats, then cats may turn out to be most important source for the spread of XMRV all over the world, which in itself may not seem to be a problem, but just imagine, one in three cats is carrying XMRV. Imagine a child playing with a cat. The cat may enjoy herself for most of the time, but there always will be a moment, that the cat gets irritated, and the child receives a few scratches from the cat, and the child will be bleeding. At that very point in time, the child is extremely vulnerable to get infected with a virus, especially with a retrovirus like XMRV. What may happen next ? The child is still bleeding, and after a while the child and the cat are friends again, and the child puts his or her finger in cat’s mouth, this way getting in touch with the cat’s saliva, possibly contaminated with XMRV. The cats’ saliva is on the child’s hands now, and the child may now be rubbing the contaminated saliva unconsciously into his or her own bleeding wound, perfectly unaware of the dramatic consequences these seemingly unimportant gestures will bring about for the future of the child. Who can tell for sure that XMRV contamination does not happen like this ?

April 18, 2010 at 5:10 am
(59) Rebecca says:

I have been reading about XMRV. I understand that it is most contagious to people who are missing a certain part of a gene. (It is way more complicated than this. I just can’t explain it any other way.:)) I have ordered an XMRV test because my son, my husband and I have been diagnosed with CFS/FMS. My daughter has no symptoms. I have had some symptoms since before I had children. If I have the virus it could be that my husband was also unlucky enough to be missing that certain part of a gene and we passed it on to my son.

I am hoping they are wrong about this. It will be hard if they are right knowing that I gave this to my son. If they are right about the way it is transmitted (like HIV) than he would have had to be born with it. It must take quite awhile to surface.

May 1, 2010 at 10:23 am
(60) Nico says:

I think the research community should be much more aggressive about the idea and possibility of transmission. I can’t read all the posts here becaues of cognitive problems. I have CFS and would like to lead a normal happy romantic life. I think at this point I will consider myself unsafe until more has been discovered. Why would I potentially want to harm another person? No Way. It’s causing me a lot of grief and sadness – even anger – knowing that I may be the same as an HIV infected patient. But, without more to go on at this point; I can’t rule out the possibility of being contageous. It’s a bitter pill to swallow. But, I know I’m not alone.

May 1, 2010 at 5:55 pm
(61) Alittlefoggy says:

If xmrv/cfs is found to be transmitted as easily as suggested in the article then the test for xmrv needs to be offered free. Right now the test is so cost prohibitive that most can’t afford it and this is something we should know for certain. Although the thought of being treated like a leper is not something I look forward to, I would like to know what precautions need to be taken around my family and friends.

July 12, 2010 at 12:49 am
(62) Joyce Lacovara says:

I’ve been like this for almost 16 yrs.
It began during cancer treatment.
Have always believed it to be microbial…because I can FEEL it.
It isn’t depression/serotonin based or some other screw up of brain chemicals.
It is not a mental disorder or behavioral or attitude problem.
My body is sick…damn it…but I have never known anyone around me to get sick because of being around me.

July 15, 2010 at 10:35 am
(63) Liza says:

I contracted Fibro/CFS as the result of a traumatic surgery that took longer than expected and the docs had to extend my neck for several hours. I knew immediately afterwards that something was wrong with my body! While I feel that Fibro/CFS may be genetically predisposed in families, I do not, in any way, believe it is sexually or fluid/body transferred at all! I have been married for 40 years, and my husband has had no signs of either diseases! And he is the only person I have ever been intimate with, also.
I would love to see more research on the forefront, though, so those of us with these awful, dibilitating diseases, would not be shoved to a back burner and treated as though we are mostly hypochondriacs!

August 22, 2010 at 5:05 am
(64) Wynn says:

I contracted a virus as a child in Phoenix Arizona (perhaps Valley Fever?) at around 10 years old in 1971. Perhaps someone sneezed in my face or I drank out of their cup at school.

I do not remember the initial “sickness”, but somewhere around 5th grade I became chronically sick – not feeling well in general. When I went to the nurse, which was often, my temperature was ALWAYS subnormal.

There was no way anyone was tracking “clusters” of these things back then. The symptoms were too benign to rise to the surface. Then of course, everyone grows up and moves away making it almost impossible to track these things.

In high school I kicked it and ran track and backpacked. I wonder now if I just gave myself PTSD from the exertion and dehydration since it was very physically stressful to do these things in Arizona.

After prolonged emotional stress at work (college stress probably didn’t help either), I neurologically “snapped” when I was 28 and I experienced my first clear symptoms of something terribly wrong. Non-stop pain like someone was hammering a bed of nails into my upper back just started one day and wouldn’t stop. Within a year I was diagnosed with Fibromyalgia.

I totally believe it was a virus initial trigger, probably initiated while I was a child. But oddly, I feel the virus keeps other viruses at bay. I belong to it, so to speak. I haven’t had the flu since I was a child. I have a problem with canker sores when I think I’ve been exposed to another virus (perhaps the original parasitic virus has been triggered causing the mouth lesions). But overall, I do not feel like this is an auto-immune disease – I feel like it is a neurological disease.

Also, I had a cat as a child (who did scratch and bite me) and I have Asperger’s. However, there were no mice in our subdivision unless the cat was infected before we adopted him as a kitten.

September 7, 2010 at 4:37 am
(65) Kathleen says:

Re Mouse to Cat to Human Transmission: just adding my personal experience.

Back in the 70′s, I took in a lot of stray cats. One -who was pregnant–turned out to be a carrier for “feline lymphoma.” She survived, but all her kittens and all the other adult cats in the house died. For many months, we had no idea what was wrong, so the first illnesses were protracted. And my contact with infected cats was prolonged and intimate, as I was trying to nurse them through their flu-like symptoms.

Now I’m wondering if my own first round of “mystery illness” — including exhaustion, swollen glands, chronic low grade fever, chronic bronchitis, and weakness, etc.– developed around the same time. Not sure. Have to think about that and talk with others.

I started wondering about possible mouse/cat/human transmission after reading the most recent XMRV and MLV reports, but didn’t know any other patients were thinking the same thoughts until I read this blog.

October 10, 2010 at 3:08 am
(66) roni says:

I was diagnosed with CFS a couple years after a violent cat attack. Bites (like sink your teeth in bites) I can still see bite scars after 18 years. my leg was covered in blood (I mean covered!) Horrible run in with a cat that went crazy. (tested negative for rabies) No previous Vet care what so ever. developed fever and sickness immediately after attack, then year or two later overwhelmed with typical CFS symptoms. If this doesn’t make you wonder if cat saliva does the trick, i don’t know what would. I wasn’t sexually active or around anyone who was sick with CFS that I know of. This Cat thing is the only thing I can come up with. weird.

October 19, 2010 at 4:52 pm
(67) kathy says:

I believe it could be genetic, my father had prostate cancer, I have chronic fatigue syndrome and fibromyallgia and my sister has MS.

October 19, 2010 at 5:02 pm
(68) Kathy says:

I BELIEVE IT COULD BE GENETICS. PASSED ON IN FAMILYS. MY FATHER HAD PROSTATE CANCER AND I HAVE CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA AND MY SISTER HAS MS.

October 25, 2010 at 2:11 pm
(69) meonly says:

this is a retrovirus transmitted like HIV and HTLV i tested positive for this virus last week after being sick for six months after having unprotected sex with a friend, initially the first thing in my mind was HIV tested negative then went on to testing for HTLV negative and finally tested positive for XMRV i have neurological problems, swollen brain, tired all the time, IBS problems, skin rashes, headaches all the time, swollen tongue with teeth marks on the side of it, and many other problems, i have always been a healthy person but like i said i had unprotected sex with a friend and a few weeks later i started getting sick and she finally admitted to me that she is always fainting all the time and the Drs can’t figure out why, i hate to admit it but i am married and cheated on my wife luckily we always use condoms and she hasn’t showed any symptoms and she tested negative, the first diagnosed i got from doctors was CFS or MS because they can’t find any virus right away think is autoimmune the reality is this, if you show my medical records and my sex risks to an infectious disease Dr. he will say right away is some kind of infection, if a show them to a neurologist he will say is autoimmune when in reality is a virus that for some people might not be as bad and for some may be too bad that they can’t continue having a normal life, this is a virus like HIV and HTLV which means you will have a compromised immune system for the rest of your life giving the chance to other viruses to activate again and cause a bunch of medical conditions, as we know more then 90 % of the people have at least EBV and some types of herpes in their bodies and some have a lot more viruses, this would explain why some cases of XMRV are really mild and others r

November 9, 2010 at 10:45 am
(70) Kelly says:

I realize that it is very hard to face the fact that our lifestyles may have brought this upon ourselves but that does not change the medical facts. The truth is that this type of virus is transmitted through fluids and not airborne and if you are sexually active and not using protection than how could you possibaly think that it would not be transmitted. Not only that but how could you not now protect others from this hell that we are living in.

December 15, 2010 at 5:10 pm
(71) Gene says:

XMRV is sexually transmitted but is not the only way. Breast feeding, transfusions, sharing needles with an infected person are also ways of transmission. It can also be transmitted by fluid secretion from a rash of an infected person, if you happen to come in contact with that person. XMRV replicates slowly so a sexual partner can get the virus and not show symptoms. When the immune system is finally compromised the symptoms will begin.

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