German study finds xmrv

[eric_s]

I wouldn't worry too much about the social status of XMRV positive people. This is to be expected to be in around 2 to 4 percent of the population and it might have been there for decades. Noone has taken measures to prevent it's spread until now, and yet it did not affect a higher percentage of the population, so it can't be so easy to transmit. And most of the people who have it seem to be fine, so i don't think it has such a high potential to scare people.

4% of the population is in the USA amounts to millions of people.All known gammaretroviruses are oncoviruses(cause cancer)If XMRV does not cause cancer it will be the only gammaretrovirus in history that does not!.They may seem to be fine but are they? bearing in mind that gammaretroviruses are vertically transmitted a 4% polulation prevelence is frightening especially given that Polytopic Mulv viruses cause neurodegenerative diseases in mammals. if this one does not then once again it will be the only one not to do.just because they don,t have ME does not mean that they will not go on to have MS or altzheimers like other mammals with neurotoxic Mulv infections all do
gammaretroviruse are gene manipulators.This could do virtually anything!

Yes, you're right. I wanted to come back and correct what i've said.
If we assumed that XMRV was the cause of CFS, and we also assume that 0.3% of the population have CFS and that 3% are XMRV positive, then that means that 1 out 9 persons that are XMRV positive get CFS. And if XMRV has not been around for a very long time, the chance of getting CFS might be even higher than 1/9. And not to mention cancer, autism, fm or other illnesses that might be caused by XMRV. So if XMRV really causes these, then it will not be a virus that people are not scared of. But still, it is so common, if those number are correct (~3% of the population), that the people who are positive can't be excluded in any way. And it seems to be quite hard to transmit, that's a good thing too.

 

[Gerwyn]

It's worth pointing out (if someone hasn't already!) that if the prevalence of XMRV in the general population is approx 4% that would make it about 40 times more prevalent than HIV. Given the potential / likely pathogenicity of XMRV this makes it an enormous public health concern.

That is absolutely correct Sam if people think of HIV as an epidemic this could potentially dwarf that

 

[IamME]

There seems to be some confusion here. Disease causing doesn't mean it *will* cause disease, only that it *can* cause disease. There are plenty of disease causing pathogens which produce little or no symptoms in most/many people (e.g. typhoid, Chlamydia, EBV, herpes etc). Indeed everyone harbours disease causing organisms, albeit not normally an exogenous retrovirus. Even HIV doesn't always cause disease as some people seem to be carriers but are immune to the effects.

Yes you're right disease causing does not mean it must cause disease in every individual, but I did say that not everyone *will* get sick because many people will die first, analogous to how "healthy" people may die of something more mundane before an undetected disease becomes prodromal. I'm not an expert on all those diseases but I expect different pathogens have different rates of virulence so you can't assume because some affect X% the same will apply to XMRV. With something like XMRV and ME/CFS it will also depend on a somewhat arbitrary cut-off point for assessing abnormalities and symptoms which may or may not be what we expect if this becomes standard. And yes some people may be carriers.. Anyway as I said it's simply a theory.

 

[Gerwyn]

Thanks for that nice analysis Dr. Yes.

What a huge find - somebody actually finds XMRV! Sweet. And apparently using different methods than the WPI - that just makes it sweeter (and the XMRV finding stronger).

My guess is that there isn't a problem about it being an opportunistic virus. I actually think this strengthens XMRV case in CFS. That depends on how immuno suppressed these patients are vis--vis chronic fatigue syndrome patients. We talk all about the immune problems in CFS but it is true that a number of immune abnormalities that consistently show up in CFS are not that large; there's RNase L (which the research world has ignored) and NK cell problems and some others but its nothing like immune problems that show up in AIDS. Some researchers on our side talk about mild immune dysfunction - they're not really impressed by the degree of immune dysfunction in all. Others think the dysfunction is much more problematic.

In any case could the immune dysfunction be six times worse than the immunocompromised patients? I wouldn't think so. Then why is it apparently showing up in such large large amounts in CFS patients and in such smaller amounts in patients the medical profession in general really does consider immunocompromised?

An opportunistic virus wouldn't do that. A virus that somehow targeted CFS patients would however.

I think the gap is too large to say that XMRV just 'tagged onto' CFS. I think based on this that XMRV is still a special problem for CFS patients and that it just happens to be in immune compromised patients (along with whatever other pathogens they have) - as well.

If they'd found it in 60 or 70% of those patients maybe we'd have a problem but when it's still so much more prevalent in CFS I don't think we have a problem. It does make things more interesting...and just shows how interested in XMRV researchers are - they're looking for it all over the place and hopefully we'll have many more studies coming out and we'll have to work through each one of them.

For me the big news is that someone found it - and that means (unless they made some weird mistake) that the three negative studies are history......

The methods were the same Cort it is just the source of Lymphoid tissue that is different.B and T cells investigated by Lombardi et al are lymphoid in nature(called lymphocytes for that very reason).There is lymphoid tissue in the lung,Al MuLV class viruses replicate in lymphoid tissue.THe Germans used fresh tissue so there was no need to activate.The key point is even at these titres much higher than found in T and B cells they still had to culture the virus before being able to detect it by PCR. In ME patients the problem is immunomodulation and not immunosuppression per se.The people were on immunosuppression therapy for a reason.Mulv class viruses are all oncoviruses.Given that immunosuppression releases a latent virus then it is likely that XMRV was more prevalent in that population in the first case immunosuppression made it more detectable than it would otherwise have been

 

[anciendaze]

XMRV and dementia

That is fascinating, Gerwyn, because for some reason, I really wouldn't be surprised if XMRV is linked to umpteen diseases and disorders, none of which were previously linked, and they [the researchers] are going to spend an awful lot of time to confirm what you have just said in a few sentences.

Understanding that HIV/AIDS can cause dementia, is a big issue, because with all these dementia concerns of the modern era, and people just blaming it on life expectancy increases, is just biting the bullet. Something always causes something, and things like environmental factors may not help, but they're not the cause. Why can't people understand the simple process of cause and effect. Could a retrovirus [XMRV?] be causing something like dementia too? We all know about cognitive dysfunction in ME, dont we?

We also know about some other symptoms, like nystagmus and tinnitus. (I have had a very annoying ringing in my ears for about 18 years.) Looking at medical descriptions of different forms of tinnitus I find some are very close to auditory hallucinations. If I reported that I was hearing messages from god, you can easily imagine the diagnosis I would have.

Nystagmus sounds fairly neutral. Approach this with preconceptions, and you might label it "schizophrenic gaze". I heard about a study by physicists interested in non-linear dynamics, so far back that I can't put my hands on the mention at a medical conference. (They should have known better than to invade someone else's turf.) They had analyzed film of "schizophrenic gaze" to see if they could extract useful information about the cause. By going frame by frame and plotting the direction the eyeball was pointing at different times, they constructed a plot of the "phase space" in which it took place. (This is an abstraction I won't explain here.) The surprise was that this space, defined by complicated motions, had a low dimension. If the motion were truly random, it would have any (large) number of dimensions. At the conference, (so I was told,) speaker after speaker rose to tell them they didn't understand what they were doing, the muscles controlling the eye were far more complicated, the nervous system was a nightmare of complexity, cognition came into play, etc. Nobody seemed to catch the implication that there was a simple neurological defect to blame which might prove a fruitful line for research on schizophrenia.

Your suggestion about dementia also coming from XMRV brings to mind the obsolete medical term for schizophrenia, dementia praecox. Literally, this means premature dementia, with an age of onset very often in the late teens. Considering a retrovirus as a possible cause changes my thinking a great deal, because a great many genes become active during that time of life. If a virus has already inserted genes, this is a time when they might well become active.

All that above is speculative at this time. We have a long road ahead in pinning down any particular manifestation of infection. I would be surprised if there were not many surprises waiting for us. Human ignorance remains vast.

What I have been tried to emphasize is the need to distinguish ourselves from sufferers with serious psychiatric problems. We may end up finding we are part of a spectrum which includes them, but, at this time, it is vital we show we can approach the subject rationally. (This added burden may not be fair, but then I no longer expect life to be fair.) I'm ready to get out of the wastebasket, and I don't want to be put in another.

 

[leaves]

So does this suggest that over 10 % of the people have a ( latent) Xmrv infection??

The methods were the same Cort it is just the source of Lymphoid tissue that is different.B and T cells investigated by Lombardi et al are lymphoid in nature(called lymphocytes for that very reason).There is lymphoid tissue in the lung,Al MuLV class viruses replicate in lymphoid tissue.THe Germans used fresh tissue so there was no need to activate.The key point is even at these titres much higher than found in T and B cells they still had to culture the virus before being able to detect it by PCR. In ME patients the problem is immunomodulation and not immunosuppression per se.The people were on immunosuppression therapy for a reason.Mulv class viruses are all oncoviruses.Given that immunosuppression releases a latent virus then it is likely that XMRV was more prevalent in that population in the first case immunosuppression made it more detectable than it would otherwise have been

 

[natasa778]

the other way of considering the data is not that immunosuppression caused an XMRV infection but that there was a higher rate of XMRV present in the first place!

Yes that is my thinking as well. Considering these were people with failing organs who needed transplants, I wonder if XMRV was in some way linked/causative of their organ failure??

I know for example that some types of kidney failure are linked to past or chronic bacterial infections +autoimmune mechanisms, makes me wonder if xmrv could be contributing to the whole picture of immunosupression and chronic bacterial activity, and skewed immune responses.

 

[IamME]

Im sorry??!! I dont have a partner, i dont have children, and as im infertile i probably wont be able to have them either ( given that id have the energy for em).
Still i dont like how you suggest that everyone with xmrv is going to het cfs. The data doesnt support it and it is hurtful.

Leaves, I'm sorry if I somehow offended you, if that is the case, but you are now seem to be saying that you are taking offense on behalf of some third party who does have the family you or I don't? Why can't they speak for themselves and have they spoken to you? If they haven't, why is it necesssary for you to get so upset on their behalf? If what I said was silly or scientifically implausible you/they have nothing to worry about, however judging from others some people have already been worried from reading the research itself -- which I didn't write. If it makes you feel any better I am happy to delete the post in question or have a moderator do it if I can't.

 

[garcia]

So does this suggest that over 10 % of the people have a ( latent) Xmrv infection??

This is certainly one possible explanation for the results, and one that crossed my mind.

 

[leaves]

Yes you did offend me, but I can see that you did not mean to. There are 2 things going on: on the one hand we are all very excited about the xmrv thing, and try to analyze and speculate about every little piece of info that we get, longing for vindication. HOWEVER, we are also very scared (at least I am) about having this virus and it's consequences. Because of my illness my mother is one of the only peoplevery close to me. I'm sure she has the xmrv, as my grandmother (cfs) and my father ( died young of cancer). The speculation that my mother will follow soon, is not bearable for me. I am ok with facing reality if I have to, but in this case, with a minimum of 4% xmrv + in the population and as Gerwyn mentioned probably more, it is not plausible that all those people will get such a severe illness. My mom has symptoms but she is doing pretty well and leading an active successful life even at her old age.
Feel free to theorize and analyze and brain storm, just do realize that these emotions, fears and concerns are out there.

 

[bullybeef]

We also know about some other symptoms, like nystagmus and tinnitus. (I have had a very annoying ringing in my ears for about 18 years.) Looking at medical descriptions of different forms of tinnitus I find some are very close to auditory hallucinations. If I reported that I was hearing messages from god, you can easily imagine the diagnosis I would have.

Nystagmus sounds fairly neutral. Approach this with preconceptions, and you might label it "schizophrenic gaze". I heard about a study by physicists interested in non-linear dynamics, so far back that I can't put my hands on the mention at a medical conference. (They should have known better than to invade someone else's turf.) They had analyzed film of "schizophrenic gaze" to see if they could extract useful information about the cause. By going frame by frame and plotting the direction the eyeball was pointing at different times, they constructed a plot of the "phase space" in which it took place. (This is an abstraction I won't explain here.) The surprise was that this space, defined by complicated motions, had a low dimension. If the motion were truly random, it would have any (large) number of dimensions. At the conference, (so I was told,) speaker after speaker rose to tell them they didn't understand what they were doing, the muscles controlling the eye were far more complicated, the nervous system was a nightmare of complexity, cognition came into play, etc. Nobody seemed to catch the implication that there was a simple neurological defect to blame which might prove a fruitful line for research on schizophrenia.

Your suggestion about dementia also coming from XMRV brings to mind the obsolete medical term for schizophrenia, dementia praecox. Literally, this means premature dementia, with an age of onset very often in the late teens. Considering a retrovirus as a possible cause changes my thinking a great deal, because a great many genes become active during that time of life. If a virus has already inserted genes, this is a time when they might well become active.

All that above is speculative at this time. We have a long road ahead in pinning down any particular manifestation of infection. I would be surprised if there were not many surprises waiting for us. Human ignorance remains vast.

What I have been tried to emphasize is the need to distinguish ourselves from sufferers with serious psychiatric problems. We may end up finding we are part of a spectrum which includes them, but, at this time, it is vital we show we can approach the subject rationally. (This added burden may not be fair, but then I no longer expect life to be fair.) I'm ready to get out of the wastebasket, and I don't want to be put in another.

I guess I was using dementia as an example that maybe a retrovirus could become something much different in certain people. Similar to the link with autism. But I do agree, if people like Dr. M does suspect something like dementia could also be linked with XMRV (like it is with HIV), it's probably best that she keeps that to herself so to afford anymore confusion between psychiatric/physical disease.

Could I ask, how would you describe an auditory hallucinations? Sometimes, particularly just as I am drifting off to sleep (when I also experience tinnitus), I 'hear a bang or explosion' in my head [they're coming to take me away, ha, ha!]. My wife has them occasionally too, but they are a very strange experience.

 

[leaves]

This is certainly one possible explanation for the results, and one that crossed my mind.

That is fascinating!! I wonder if that is good or not good for our cause...

 

[IamME]

Ok. My parents are both gone now (as far as I know not XMRV related, but then...) so I know how it feels, and I know how precarious and precious time with the surviving parent is. I regret I didn't get the chance to know them better as an adult, or was able to look after them when they were sick and needed me most. I hope you have some kind of support system.

 

[IamME]

Could I ask, how would you describe an auditory hallucinations? Sometimes, particularly just as I am drifting off to sleep (when I also experience tinnitus), I 'hear a bang or explosion' in my head [they're coming to take me away, ha, ha!]. My wife has them occasionally too, but they are a very strange experience.

That's called exploding head syndrome (!)

http://en.wikipedia.org/wiki/Exploding_head_syndrome

I've had it a few times as well.

 

[Knackered]

To the person who said 250,000 ME/CFS in the UK. My guess is that not all of them will be XMRV+, VIP said ~50% of the tests from the UK were positive, out of those, some will be false negatives but not all of them will be. I have no doubt in my mind many people will be misdiagnosed, I'm not sure how many but I think it will be quite a lot.

Edit:
According to Dr Jason 25% of people with CFS have CCD, that's 62,500 people in the UK.

 

[omerbasket]

Yes you did offend me, but I can see that you did not mean to. There are 2 things going on: on the one hand we are all very excited about the xmrv thing, and try to analyze and speculate about every little piece of info that we get, longing for vindication. HOWEVER, we are also very scared (at least I am) about having this virus and it's consequences. Because of my illness my mother is one of the only peoplevery close to me. I'm sure she has the xmrv, as my grandmother (cfs) and my father ( died young of cancer). The speculation that my mother will follow soon, is not bearable for me. I am ok with facing reality if I have to, but in this case, with a minimum of 4% xmrv + in the population and as Gerwyn mentioned probably more, it is not plausible that all those people will get such a severe illness. My mom has symptoms but she is doing pretty well and leading an active successful life even at her old age.
Feel free to theorize and analyze and brain storm, just do realize that these emotions, fears and concerns are out there.

I thnk that currently there is no evidence that someone healthy who is XMRV positive will get sick because of the XMRV, nor there is evidence that there is a good chance he will get sick. It's possible - but I think it's not less possible that such person would not get sick due to being infected with XMRV. Moreover, perhaps he is infected with XMRV yet healthy because his body knows, and will know forever, how to deal with XMRV, whereas our bodies, due to our specific genetics, doesn't know how to deal with it and therefore after being infected with XMRV we got sick?

 

[MEKoan]

Yes that is my thinking as well. Considering these were people with failing organs who needed transplants, I wonder if XMRV was in some way linked/causative of their organ failure??

I have an acquaintance who is a doctor - a psychiatrist. She thought she had sub clinical Lupus for many years. I thought she had ME. After struggling along for decades with very uneven health she developed cardiomyopathy. She was urged to go on the transplant list. She was prescribed Doxycycline for a seemingly unrelated issue and her health improved drastically including a huge improvement in her "cardiomyopathy". She took herself off the transplant list and keeps herself on Doxy. She has returned to part time work and is doing very well, considering. I still think she has ME.

 

[omerbasket]

To the person who said 250,000 ME/CFS in the UK. My guess is that not all of them will be XMRV+, VIP said ~50% of the tests from the UK were positive, out of those, some will be false negatives but not all of them will be. I have no doubt in my mind many people will be misdiagnosed, I'm not sure how many but I think it will be quite a lot.

I think it's very very reasonable to think that a notable number of people that had been diagnosed with ME/CFS would be found not to have XMRV and therefore there diagnosis is wrong. I'm a fibromyalgia patient and I'm also arfraid that if XMRV would be proven to be the cause for fibromyalgia, and I would not be found to have XMRV, I would again be without a diagnosis.

 

[shannah]

Do you think that WPI will make a public statement soon about this study?

 

[Gerwyn]

Yes, you're right. I wanted to come back and correct what i've said.
If we assumed that XMRV was the cause of CFS, and we also assume that 0.3% of the population have CFS and that 3% are XMRV positive, then that means that 1 out 9 persons that are XMRV positive get CFS. And if XMRV has not been around for a very long time, the chance of getting CFS might be even higher than 1/9. And not to mention cancer, autism, fm or other illnesses that might be caused by XMRV. So if XMRV really causes these, then it will not be a virus that people are not scared of. But still, it is so common, if those number are correct (~3% of the population), that the people who are positive can't be excluded in any way. And it seems to be quite hard to transmit, that's a good thing too.

no 3 % of an apparently healthy population have XMRV.

97% of ME patients diagnosed by the ccc criterea have XMRV.

The transmittability would be ascertained by looking at the relatives and spouses/partners of XMRV positive people and the possible illnesses caused by gene regulatory abnormalities potentially caused by a gammaretrovirus.

They could range from anxiety depression to multiple sclerosis or anything not obviously connected to XMRV.The results could be compared to matched groups of people who do not have xmrv and the illnesses that they present with
Assumptions are no use at all

We could even use a good epidemiologist That would leave out Sudlow of course