Q: I am excited to find out that a retrovirus has been discovered to be the cause of fibromyalgia, which I have. My one concern is if you get the virus through blood and body fluids, will it be considered an STD? Is it sexually transmitted most of the time? I guess there will be a lot of people claiming to have these diseases through blood transfusions, but there can't be that many people who had transfusions. Will there be a stigma to having any of the diseases that result from XMRV?
A: First, I want to point out that right now, the most we can say is that XMRV may play a role in fibromyalgia -- we don't yet know that it's involved for sure, or that it's part of the cause. (The chronic fatigue syndrome research is a lot better, and even it is only a first step.)
Our minds do go to "STD" when we hear about transmission through bodily fluids, but that doesn't mean sex is the only or even most common method of transmission. This is pure speculation on my part, but it could be that it's not easily transmitted through semen and is more likely passed through blood, or saliva, or breastmilk -- which could mean transfusions, mother-to-child, etc. would be more common. At this point, we just don't know. According to the Whittemore Peterson Institute's website, "XMRV is thought to be transmitted through body fluids such as blood, semen, and mother's breast milk . . . ." However, no transmission method is proven.
The question is one that's cropping up a lot -- our first retrovirus association is HIV, which came to public attention as an STD (and one linked to a much-maligned minority group to boot), and then we learned later about other means of transmission. The only other known human retrovirus is HTLV, which causes leukemia and some other diseases. HTLV can be transmitted sexually or through the blood, but it doesn't carry the same stigma as HIV.
Also, when researchers have tried to identify populations at risk for FMS & ME/CFS, they haven't identified a high prevalence in prostitutes, IV drug users, and others at high risk for HIV. (There could be several reasons for that, including under-diagnosis, but at this point we don't know of any link to those groups.)
If the XMRV link is confirmed, I'm certain that some people will wonder about infidelity when their significant other is diagnosed with it (as if we needed to add more strain to our relationships.) However, I don't see the general public associating these conditions with STDs in general, because it's coming to light in such a different way than HIV/AIDS. Maybe I'm overly optimistic, but I think XMRV could help lessen the stigma we already face.
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Has it ever been reported that a partner of someone with FMS & ME/CFS has then gone on to contract the same condition themselves? I have never heard of that.
Jt.
Yes, it has been shown that people in close contact with those with ME/CFS have a higher rate of ME/CFS, that can’t be explained by possible genetic factors.
Notice in the abstract below, spouses/partners have an eight times elevated rate of ME/CFS, while children’s rate was more than twelve times.
http://www.informaworld.com/smpp/content~content=a902814042~db=all~jumptype=rss
Abstract
The prevalence of CFS (Chronic Fatigue Syndrome) and chronic fatigue were investigated in family members of CFS patients using a questionnaire-based study. Significant differences were seen between the prevalence of CFS in all groups of family members relative to the published community prevalence of 0.422% (spouses/partners: 3.2%, p < 0.001; offspring: 5.1%, p < .001; parents and siblings: 1.1%, p < 0.02; second and third degree blood relatives 0.8%, p < 0.02). The prevalence of CFS was higher in genetically unrelated household contacts and in nonresident genetic relatives than in the community, indicating that both household contact and genetic relationship are risk factors for CFS.
Don’t forget that there were cluster outbreaks, also. There’s no way that all the people affected in Incline Village, including so many teachers, were sharing bodily fluids sexually or through other body fluid to body fluid directly. And how about David Bell’s cohort of mostly children? If we hear it CAN be transmitted a few ways, we haven’t learned that it can’t be transmitted in other ways.
I have Severe M.E. and never had sex, never used drugs, wasn’t breastfed, never kissed anyone before, haven’t had a blood transfusion before. None of my family have the disease either. So it can’t be.
Same here, Sally. I’ve had social anxiety as they call it since a child, it kept me away from people except in a work environment. Ironically the anxiety induced isolation helped prepare me for further social isolation because of CFS. Ironically I have less social anxiety because of CFS, as the brain fog/exhaustion has lead to less social inhibition, now that I’m almost house bound of course.
CFS/ME has already ostracized us more than any other illness today. XMRV may increase that. It might be worth it. At least they won’t say that we are lazy, mentally ill, slackers, stubborn, fakers, malingerers, wimps, etc. Now they will say we must be avoided because they don’t want to get such a horrible disease, yet just a second ago they said it was all in our heads.
I think I read a study years ago that found the less intimate the contact, the higher the infection. I think viruses are transmitted by aerosol more than they would like to admit. I think Australia does not allow anyone with ME to donate blood. Some US officials said unofficially that those with CFS should not donate blood. I felt a short time after I got CFS and knew little about it that I should not donate blood.
Sorry for the negative tone of my post. Dealing with people has been the most difficult thing and I fear even more difficulty if XMRV proves causal. December will be the 15th anniversary of this illness. Is it a coincidence that I suddenly came down with severe flu-like symptoms that made me feel infected with something for years?
I am very happy that XMRV and its links to CFS/ME have been discovered. I have already been ostrasized for having this illness for 23 years–called lazy and a slacker and a faker. If XMRV is the cause of CFS/ME, and we are not sure about that yet, then I think it will give sufferers the legitimate attention of the medical research communities and, hopefully, some effective treatments.
I have Fibromyalgia and a boyfriend I had in my college days later went on to develop CFS so it make me wonder if I got xmrv from him. A bigger concern is the possibility it may have been passed on to my 3 children. I hope they confirm this retrovirus one way or the other quickly and make a test available to all soon.
Fibromyalgia and its close cousin, CFS, most likely is a neurological disorder in which deep sleep disturbances prevent the limbic system from recharging thereby preventing proper inhibition of pain and sympathetic nervous activity. Until this retrovirus business can be verified by other groups, beware. Remember, it wasn’t long ago that Ebstein Barr was blamed. It hasn’t even been established that such a virus is even pathogenic! I’d get the opinion of Infectious Disease specialists prior to coming to any conclusions. If it were all that definitive, the medical comunity as a whole would support it. Strange, that’s not the case!! Beware!! If you want to find a mechanism for these Central Sensitization Syndromes, read The Truth About Fibromyalgia.
I devleoped CFS at 15 and do believe it could be an STD but also maybe caried by a vector. Its a mouse virus not found in mice and might have even jumped species to another animal before it reached humans.
Between the ages of 12 and 14 years I was bitten by a sandfly and developed a massively swollen leg. Arojund the same age I found a tick attached to me also resulting in swelling.
Thats all I remember but I also developed a protruding swolen lymph node in my neck which persisted for several years. I can’t remember If it followed the sandfly bite or the tick bite. My severe symptoms did not start immediately foloowing either of these episodes however if theirs a symptom free stage as in HIV then that would make sence.
There’s the possibility I inherited it from my mother who spent a lot of time in bed and was always poorly.
An ex partner mentioned that a subsequent partner had CFS but I know very little about it and whether she developed it before or after they met.
I don’t know if its common knowledge but I think std infection rates are higher in women because of the body fluids injury thing. In parts of Africa the HIV+ rates are 9 times higher in women. This alone could explain the higher rate of CFS in women. This actually occured to me a few years ago when I heard about my x partner having CFS.
I heard that a woman who moved into a house I rented in relation to my work became reclusive and ill like I had been but again I don’t have many details.
I have spent most of the 34 years I’ve had this nasty illness alone in agony so if its infectious then that has been a big protection for many.
Unfortunately I’ve heard this “STD” theory too much already to not fear that we will be further stigmatized by the idea. Really, do we need another way in which to be blamed for our illness? *sigh*
There have been hints that CFS is an STD since the beginning of this epidemic. For example, in “Osler’s Web” Hillary Johnson documents a case where six male homosexuals all contracted CFS after contact with the same male prostitute (CFS was not confused with AIDS in this analysis)
I think this question is irrelevant at this time. Until we know more.
We don’t need any more social stigmas — let’s see what science finds out about the illness and go from there.
My mother is ill with Fibro and CFS, too. “STD” is misleading because you don’t always get STD’s through sex alone. HIV can be passed down or gotten through blood transfusions. The term STD was probably developed to prevent people from making poor choices — to be more careful in their sexual practices…
… but it’s obviously not the whole story. It gives a moral aspect to an illness that is not always contracted in an “immoral” way.
It’s a useless term, especially for an illness which previously nothing was known about.
While XMRV MAY be transmitted through blood & bodily fluids, the fact that anywhere from 250,000–500,000 children & teens in the US have CFS speaks against sexual transmission/blood transfusions as a possible causative agent. I have urged researchers to spend more time/$$$ studying kids & teens with CFS because there are, presumably, fewer variables & they have less complicated medical histories. It would be nice to know what % of them have parents with CFS/fibromyalgia & what % of those were breast-fed, for example. Thanks for sharing the reference of the increased risk of CFS in household contacts–I have never heard of 2 spouses/partners both having CFS but know of many parent-child pairs and siblings.
I seriously doubt any of these claims until I see better sample sets and more peer reviewed research. It is very possible that this retrovirus is widespread and only showed up on this researcher’s data because of its high infection rate and not a dependency on her variant and invariant sample sets. Nor do I think it likely that it causes fibromyalgia because certain chronic fatigue sufferers might have this in common.
Further, if these diseases were sexually transmitted, then you would see FAR more cases than 6-8% of the population. Also it does not explain the higher female percentage or why those of us males who were Gulf War veterans seem to be outliers (getting it at early ages right after deployment).
This is just my own opinion here, but I strongly suspect that what we currently describe as fibromyalgia is at least two separate diseases or conditions. The “painful to touch” description is certainly not me or many other people I know. We have pain in our muscles and especially fascia. Nor is my pain threshold lower as some people claim. My pain threshold is actually much higher than most peoples’ because I have suffered in so much pain for so many years.
I think our problem here is that fibromyalgia as we now understand it is far more complex than most people are willing to admit. It is likely really an entire spectrum of separate diseases with different causes. Other veterans with Gulf War Syndrome describe the exact same symptoms. But post-menopausal women in various support groups describe something entirely different in my opinion.
This is not to say that one person’s fibromyalgia is legitimate while another’s is not. But I don’t think it makes sense to put us all in the same group. It definitely does not make sense to believe there must be a single cause.
Remember that the retrovirus that causes aids and the retrovirus that causes Leukemia both deterministically result in the same diseases. There is nothing ambiguous about aids symptoms. But there certainly exists wide discrepancies in fibromyalgia.
At first I welcomed the news of the discovery of XMRV as a major medical breakthrough, not that my disease could be caused by a retrovirus. Now, I am getting a bit tired of the hype. All we have to go on for now, is one scientific publication. The link between XMRV and prostate cancer (which triggered the research for a link between XMRV and ME/CFS) could not be confirmed by German and Irish studies. So I have pushed XMRV to the back of my mind until the results of worldwide studies that confirm the findings of WPI (or not) are published. Which I hope will be in the following months.
@Adrienne, I didn’t have this blog in mind when I used the words ‘hype’ and ‘XMRV’. I find the articles on this blog well-balanced.
Why perpetuate the idea that STDs are stigmatized illnesses? Sexual activity is a normal part of human life, and unfortunately sometimes STDs are a result — even with due caution.
Everyone who becomes ill, no matter the reason, is deserving of compassion and respect.
Have you got a link to the Irish study, Johan? I haven’t heard about it but would like to.
Guide Response: I couldn’t find an abstract or the article (free) online, but I found more info here: National Cancer Institute XMRV Q&A and the full article citation is at the end.
Interesting – I had a heart valve inflamation in 2005, which was followed by CFS a couple of weeks later. My cardiologist told me, that there is a significant statistical relationship between the first and the second desease. Also, there’s always been a significant increase of CFS in areas with natural desasters. Furthermore, I remember the film “remember me”, in which the reporter described a sudden breakout of CFS in a smalle village…
When I put all these cases together, they all point to the possibility of infection through medical care with ínadequate sanitation – through a retro virus related point of view:
1st, during my heart valve inflamation, I had several physicals with an endoscope, called TEE. Its a painful – and always slightly bloody – procedure, so definitely a good possibility for a resistant virus to enter and infect a weakened organisam…
2nd, I ‘d like to point out the problems with medical hygiene in the case of natural desaster – making any medical center a hotbed for any kind of causative organisms..
3rd, it would be really interesting to find out if the sudden CFS epidemia in the village went along with the opening of a new medical practice, led by a doctor with a distinctive enthusiasm for blood analyses or transfusions – and less for medical hygienics…
HIV would have had an easy time in all of the above mentioned cases, so why shouldn’t XMRV? It’s from the same virus family, it can propably be treated with similar therapies and it uses for shure the same ways of infection, which could in many cases by traced back to the origin of a medical treatment with inadequate sanitation. In my opinion, the risk of infection through medical care is at least as high as the risk of infection through unprotected sex…
I think it will come down to the subsets and perhaps various mutations. We still don’t know if XMRV is causal in CFIDS.
Certainly in mass epidemics, would be some other transmission other than STD type. That’s why I think there is something else underneath the whole XMRV issue. As for myself I certainly think XMRV (if the “cause”) could be an STD—my boyfriend got sick about the same time I did, my husband has had this and both the guys kicked it—were very sick with a mono-like illness (one was hospitalized)–both were sick over six months (and not at the same time.) Boyfriend earlier, then I got sick, then later husband got sick. Our child has CFS with very objective documentation. (That would be vertical transmission–from mother to child.) I was never in an “epidemic” as Tahoe or Lyndonville but it was all in the same time period. Early ’80’s.
Whatever it turns out to be, I want treatment found. I don’t care about the stigma issue anymore, except that it impacts research. And the stigma with CFS/CFIDS has been that it is just something trivial. We know it’s not. We know it’s something bad. The sooner research (good top-rate research goes on and at warp speed) the better. There’s always the possibilities that something else messes up the immune system and that XMRV is a retrovirus out there that is involved in some subsets of CFIDS.
I can guarantee all of you that if the public starts to believe that fibromyalgia is communicable, we will be headed for some serious civil rights problems. America is probably the most selfish and fearful western nation (at least in my experience). Do you guys not remember what happened in the eighties when HIV/AIDS became a huge issue? I remember a couple of kids who got it in one family near my hometown who were chased away from their school like they were vampires. Their home was vandalized and they received death threats if the children went to school. It took years for Americans to calm down about HIV which is not even all that widespread.
If Americans start to believe that they can catch a disease which causes constant debilitating pain, it will be a nightmare for us.
My spouse walked out on me when she realized she couldn’t have her perfect marriage with me making lots of money and her living a life of leisure. The divorce was awful with her arguing I should be denied custody of my own son because I am disabled. The judge seriously considered this despite the obvious civil rights implications. Can you imagine what would happen if your spouse walks out on you and argues you are a biological threat to your children?
What about employment? Do you guys *really* believe Americans are incapable of rationalizing the very worst civil rights abuses? Just having this in your background can easily block you from meaningful employment if you are still able to work. America has no unlawful termination laws. All the employer needs to do is provide a judge with a reason other than the discrimination to get away with it. This is already the case for all other kinds of discrimination.
After 9-11, was it not the governor of Virginia who ordered all Muslim students to be arrested and detained? They created road blocks to capture these people as they fled for safety. In one incident, the police fire a volley of bullets into a car occupied by students terrified for their lives.
You DO NOT want this kind of wild speculation getting very far. First of all, it is so flimsy to begin with. Second, most Americans are woefully lacking in the cognitive faculties to make rational decisions. You can see it over and over again.
Maybe what I said angers you. It sucks for me too. The truth hurts sometimes. I strongly encourage all of you to not promulgate this kind of unscientific speculation. Wait for real research; peer-reviewed papers with results that can be deterministically duplicated and verified.
These stories I am reading here about people speculating how they gave it to their partners or children are not based on science. You are only looking at your own situation and attempting to generalize that to an entire population. Maybe your theory seems to fit in your situation. But it really does not fit into reality. Many of us have had plenty of partners who never became ill.
This kind of speculation is extremely dangerous in a nation like ours.
I was diagnosed with CFS when I was 16, almost 20 years ago, though in reality I had been sick for about two years before that. When I first became sick, at the age of 14, I missed almost six weeks of school. My parents and I had no idea what was wrong with me.
At that time, CFS was a relatively “new” disease and most doctors didn’t even know about it or they didn’t consider it a “real” disease. My doctor even told my mother I was faking because I didn’t want to go to school. My mother was furious. She KNEW there was something wrong with me and I wasn’t faking. I loved school, was a straight A student and had many friends and activities. She left the doctor’s office and we did not go back for two years.
During that time an old friend of my family moved back home, after being diagnosed with CFS. As she was describing her symptoms, she was describing me. Good thing, too, since I suffered a “relapse” not long after. We did research and took it to the doctor. While he never apologized for his insensitive remarks, he did many more tests and made his diagnosis. I nearly cried because finally someone believed that I was really sick.
Five years ago I was diagnosed with fibromyalgia.
All this is to make a point… CFS/ME and fibromyalgia are NOT STDs!!!! I cannot stress that enough. Having an STD is pretty impossible when you have never had sex — or a blood transfusion.
There are so many things we still don’t know about CFS/ME and fibromyalgia. Are they neurological disorders? Is it one disease – or several? Is it an immune disorder – or something else? Is it really caused by a retrovirus? And how long has it really been around? 20 years? 200?
These are all good questions that we need to keep asking. But medical science can only take it so far because we still lack certain technology.
By the way, even during times when I felt okay, if the doctors did blood tests, they ALWAYS said I had a “mono-like viral infection.” ALWAYS. Which leads me to believe there is a lot of truth in the possibility of these diseases being caused by a retrovirus – though I’m not sure XMRV is the right answer. The fact is more research is still needed.
I still live with the hope that one day I will be pain free.
Again, I think it comes down to subsets. I think that CFIDS is not all the same. I think there have been mutations over the years. Is that speculation? Of course it is. All on this blog is. But why can’t there be speculation? If what many of us have turns out, in fact, to be a retrovirus, that says a lot re: transmission. It’s very much a mystery. There is, though, medical evidence of vertical transmission from mother to child. That we do know can occur. Will it always? No. But it can.
In reality, mononucleosis cannot be “caught” without “kissing”—hence, the name “kissing disease” and CFIDS has connections to mononucleosis (at least one subset does)—so that would suggest that kissing or eating after someone might be a mode of transmission. As for myself, I don’t allow others to eat after me (nor do I share their food), I don’t drink after others and I would never give blood. I thought of all that years ago. Why is that something to fear? It is being logical and careful of the health of others.
It would also be possible (if a retrovirus is involved) that transmission would not have to be from sex, blood products or kissing even. It could be from vertical transmission—from mother to child and the mother could be either symptomatic or asymptomatic. Those are things that are important to know and why research needs to move fast. We also need to know the safety of our blood supply. That’s not over-doing it. It’s being realistic and saying, this needs to be studied and fast.
There’s another theory that I have read and that I did not see mentioned here. (If someone did mention it and I missed it, I’m sorry.) Anyway, the theory I am talking about it that there’s a possibility that the XMRV virus (if, in fact it is the cause- remember we still do not know this) may be “piggy backing” on another virus, like EBV, for instance. That could explain outbreaks better, and it could be another possible reason why children get this, etc.
Like someone else mentioned, there is a very good possibility that there are subsets of true CFS at this point. I say true CFS, because there have been so many problems with defining it (thank you CDC) that many people have been falsely diagnosed with CFS. However, it is quite likely that even when you eliminate the misdiagnoses, there are still subsets within the true CFS community. It would certainly help to explain some of the differences.
I just hope that if that is the case, people learn about the subsets, rather than jumping to the conclusion that there are none. If researchers fail to look for subsets, people who do not fit into the first discovered set might wind up getting told that they don’t really have CFS and be left out of further research, told its in their heads, etc (basically a continuation of how it has been for all of us until the XMRV discovery).
I think I can trace my Fibro back to getting the Swine Flu Vaccine years ago. So would it make sense to think that it could be in vaccines as well?
First of all:
@Daniel: Thank you. You’re right.
@Reg: I agree.
@Susan and Tammie: You may be onto something.
I was officially diagnosed with fibromyalgia in May of this year, but in reading over the “monster list” of symptoms, I began showing signs of it as a very small child. I had insomnia as early as age three. I developed a headache that’s never gone away at age 12. Various other items on the list have appeared as I’ve grown older and had car accidents, medical procedures, and so on.
I’m now 39, and things really got nasty for me pain-wise after another car crash in 2001. And then I nearly died from acute pancreatitis in 2007, and I’ve never been the same. After two years of pain that continued to ratchet up the pain scale, I finally saw a pain management doc who diagnosed me with fibro.
But what I’m really try to say here is, it can’t be an STD. I started showing signs of this when I was TWO YEARS OLD. And no one in my family has it that we know of, on either side.
I did have a mono-type illness when I was 28, and my doctor had no idea exactly what it was or how I caught it. I was married at the time, my husband didn’t have it — or catch it. And I wasn’t “misbehaving.”
So, there’s no way anyone’s going to get me to believe fibro or CFS are STD related.
And Daniel is exactly right: With the paranoia in this country — think about H1N1, which scares the piddle out of me, even though I’ve been vaccinated against it — I can’t even *imagine* what kind of backlash we folks would suffer if the general population even had a passing *thought* our condition was contagious.
Those are my thoughts on the matter, good, bad, useless, or infuriating.
I think it is really unfortunate that this theory is being brought forward on this site.
How unfortunate for all of us affected now knowing that others may now look at us thinking that we have a communicable disease, more specifically a STD.
Since the first information provided on this site regarding XMRV I have had major concerns that the information and the comments may have created unnecessary concern for many.
It is wise to await accurrate information from the medical experts rather than making assumptions that may be completely inaccurrate and damaging.
Susan wrote “In reality, mononucleosis cannot be “caught” without “kissing”—hence, the name “kissing disease”
This is false. I was a teacher and caught Mono from one of my students, and I gaurantee there was no kissing or sharing of food or drinks. There was close contact–like exchanges papers and leaning over to help or correct something– but that was all.
That was 11 years ago, and I have had CFS ever since.
But I did have some sympoms before that–all my life actually. The family alwys knew I’d inherited my mother’s “weak” system. She had cfs symptoms since she was 28. I always knew I would eventually get it. My goal was to put it off as long as possible.
Unfortunately, the mother of my student told no one her daughter had mono until 6 months later, so it was about eight months after getting sick that I found out I’d contracted mono instead of catching one flu after another.
It was another year before I realized how severe the disease could become, and by then I was totally disabled. I have been disabled for 11 years now, and hope they find something to treat this disease.
Leona
I was thinking bodily fluids…that could mean different ways.
For example, an infected cook, professionally or the “cook” at home, could accidentally spoil some food.
There are a couple of scenarios…in outbreaks, for example, maybe the tap water was infected because of some malfunction somewhere…..children at a birthday party: think about the many shared or confused cups and who knows….with 4% of the pop. + outbreaks+ children….it must be a broader way of transmission!
I am still not happy about the retrovirus thing! I don’t know….I already have and had to learn not to be part of normal and very social life activities and have found a very rich life in my close family and spiritual and other quests…..
I did experience the “stigma”….much so. At first it was painful or hurtful, better said, but it’s already 25 years….
I rather have the prejudices than a retrovirus!!
I had gotten used to the “supposed” fact that i will just live on this way, hopefully not worse, maybe a miracle, unlikely, so hopefully not worse!!
And then, a Retrovirus!! That might be crucial and important news, but not good ones to me!
I can’t help but wonder if everyone really understands???
Before there was uncertainty and agony, yes, but who expected to die of certain cancers or maybe cardiomyelitis and other things, especially with the risk of this happening in their 50ies or 60ies….i have to be clear: there is no rule or fact that we will die of cancer (and i know everyone has to die anyway), but this XMRV knowledge brings bad news! When I think about it, I get nausea and my stomach gets tight: retroviruses do not have a good record. They are not benign. They produce cancers and serious cardiovascular consequences and dangers. I really want people to understand!!
It’s a very sad report card for our societies! As some very ill people are happy or relieved to hear they carry and suffer from a retrovirus! I really hope that this is not as prevalent as it looks now. We have to wait and see. As I understand, it will be early January that we will hear a lot more.
May God help us to get through to this!!
And don’t be relieved if you have the virus, it’s the other way around. May we all be helped!!
I have both FM and ME/CFIDS for more than eight years now and I have to say that I adamantly believe that the term “STD” would be the WRONG term for these illnesses. It is tossed about too easily and in no way describes the means or transmission of this illness IF, in fact, it is a retrovirus transmitted primarily through saliva/blood/breastmilk.
I hope they find definitive evidence of this retrovirus because it would indeed validate the illnesses but I Also hope that they label it CORRECTLY as we Have been stigmatized Enough. I have been referred to psychiatrists more times that I like to remember by doctors who don’t believe in these illnesses. It has gotten a little better since Congress allocated more funding to the research of these illnesses (which politically recognized them as REAL-a good step for us!) But a source needs to be discovered and a test to detect it as well. Here’s Hoping!
The study indicates that the vast majority of those with M.E., when tested, were found to be infected with XMRV related retrovirus. Repeat the test, and if it remains positive means that the diagnosis is chronic infection with XMRV related retrovirus. By removing the viral activity, by using whatever method is appropriate, will then reveal if a full recovery takes place or not. The result of this process will determine whether chronic infection with XMRV related retrovirus is the cause of M.E./C.F.S or not.
It has also been suggested that XMRV related retrovirus can be carried through being attached to other pathogens, therefore, as per my own onset of M.E., a sudden, non-specific respiratory infection was the beginning of my ill health. This means no sexual transmission was involved.
In terms of treatment, many pharmaceutical companies are now testing existing antiviral drugs, and in one case the very safe drug Artesunate, intended to treat malaria, is also being tried. This drug is already known to be effective against Human Herpes Virus 6, as used in my own case successfully. If this drug does work against XMRV related retrovirus, then we may have a very safe therapy to consider, noting that most anti-retroviral drugs are rather toxic.
I have suffered from FM and possibly CFS for almost 50 years. As a 3rd grader I missed over 30 days of school, suffering from vague, unwell feelings. Within a year I was plagued with hives, headaches and a growing list of afflictions.
I was not breast fed, have never had a transfusion. But I suffered mental trauma as a 6 year-old when my older sister died and was given little explanation by my parents. Within 6 months of her death I had my tonsils removed, had chicken pox and measles. As my holistic doc says, my immune system crashed.
I have read that when children develop FM it can be the result of some type of trauma. I have a hard time believing otherwise considering my own history.
I second Daniel (20) and his eloquent words.
I too remember all to well the horrible years of hysteria and persecution of patients (adults and children) in the early years of the AIDS epidemic in this country.
Please, please, don’t go there.
Some may believe XNRV is an STD. However, I have been abstinent since 1984 and have never had a blood transfusion. I was diagnosed in 2003, but probably had Fibro at least 3 or 4 years before getting the diagnosis. I do not eat or drink after others. I have had multiple surgeries. I suppose someone with the virus could have been cut during one of the surgeries. Of course they would not tell you even if they knew they had it. I got infections after two of my surgeries because of nasty hospital staff who did not wash theirs hands or used dirty equipment. I know this because the MD tested the drainage of one and there were 2 bacteria, one of which is found only in feces. I had not had a bowel movement between the surgery and the time the infection started. If my Fibro is cause by this retrovirus, I believe it was in this manner.
The Cleveland Clinic “Urology and Kidney News” Fall 2008 newsletter article titled “XMRV is Found in Prostatic Secretions: Evidence Suggests Sexual Transmission” makes this point “XMRV [....] is found in expressed prostatic secretions and its infectivity is enhanced by prostatic acid phosphatase and semen. These observations suggest that XMRV may be sexually transmitted.” Several of the authors, including Robert Silverman, are also authors of the landmark CFS/XMRV article. Granted, the article refers to the strain of XMRV found in prostate cancers, but likely applies to the CFS related strain.
http://my.clevelandclinic.org/Documents/Urology/UKD_News_2009_Fall.pdf
It then looks as if semen would be one way of transmission.
Does that make it an STD if there are also several other ways of transmission? I don’t think so.
Many problems don’t have a single cause!
I am convinced this either.
Isaac pointed out natural disasters, good point, the “piggy-back” or how it is called, should not be dismissed, as it might be just as often the case as vertical transmission.
@ Daniel: I do “believe” that transmission between spouses and partners is yet another way of possible contraction of illness. It becomes science if it is reported over and over again. There might be time lapses and different expression of illness.
I don’t think we have to worry about stigma that much,
Since a majority of sufferers still seem to be women and children, i think there is automatically less stigma.
Panic is another issue. I think panic we will have. And probably for a good reason. (I am not saying that it is good to panic ! – but there will be realistic reasons, simply because there are so many ways to “catch” it!)
And some of what you are describing, Daniel, will happen, I am sure. But I am not afraid of that, simply because there are so many of us! And if not us, then a good old friend, a close relative, our neighbor, our beloved teacher, the wonderful minister, the cute little kids next door….it is just too many of us!! And it is all among us! There is really nowhere to flee, except maybe Asia, at the moment.
It’s not a poor attempt at joking, I saw this map before, and strangely enough, far Eastern Europe and beyond don’t show any cases, but this may well be lack of awareness, diagnosis and reporting.
Different people feel differently. Myself, I think i simply have toughened up a little after 26 years of pain and illness, stigma is not what worries me!!!
Will there be help? At least some medication that will stop further progression? And let’s make public all possible ways of transmission – most people I believe – would do their best not to spread it!! But they do need to know all means of transmission!
Every day we come a little closer. I would think in January things will pick up very fast.
I’m pretty stunned at comments on this site re: the anxiety related to a possible retrovirus. Did anyone read what Dr. Nancy Klimas said in her interview with the NY Times? She’s an immunologist who devotes half her time to HIV/AIDS patients and half to CFIDS patients. She said that if she had to choose either illness to have now (in 2009) she would chose HIV over CFS/CFIDS. At least those with HIV can now lead normal lives.
If what I have is caused by a retrovirus, then find a way to control it (as they’ve found in HIV) and I’m fine with that!
Heck, people in the UK have been locked up in psychiatric wards for having CFIDS/ME. If the retrovirus connection pans out, watch that criminal behavior change!
i had a blood transfusion while i was pregant i have fml/cfs will this affect my child?
Sandy,
It’s too soon to know what may impact your unborn child. I know it’s hard not to worry about everything when you’re pregnant or have a new baby, but try to put these fears aside. We don’t know whether we’re passing a virus or a genetic predisposition to our children, and currently there’s nothing we can do to prevent it. What we can do for our children is to provide them with the tools of good health. When you find yourself worrying about this, remind yourself that XMRV researchers are already working on a vaccine and finding treatments — by the time your child is an adult, who knows, these conditions may have gone the way of polio.
Then there’s this:
http://is.gd/6Khe9
Bruce,
That study may not be valid for several reasons. Here’s more:
British XMRV Study Results Released
Purification processes went on for months until the right, perfect subtle blend was achieved.
Allow me to introduce you to mini rejuvenation vacations.
Fingernails and toenails are often affected (psoriatic nail dystrophy).
Abstain for sometime from intercourse so that the sperm count increases.
What does it take to reduce cellulite?
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