German study finds xmrv

[Gerwyn]

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.

A lot of people who have been given a diagnosis of ME/cfs dont have it. diagnosed by oxford criterea CCC ME/cfs=0 XMRV=0

 

[Gerwyn]

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.

there are a lot of variables involved in whether a person who contracts XMRV goes on to develop ME or some other illness.It is complex but in essence it depends where it lands in the DNA.It could quite happily do nothing if not in a regulatory gene.
If in aregulatory gene then different effects are possible depending on the gene titre and system infected. It could be IBS,or endometriosis or elevated rssting heart rate,achlorohydria asthma etc more serious MS type symptoms are possible a bit like having on two or more symptoms of ME.cancer is possible and likely.But will everyone with XMRV get ME-NO.Will they have some health issues yes but if lucky management by palliative measures or not too debilitating All human retrovirus are pathogenic it just depends on the level of pathology they induce

 

[omerbasket]

I don't understand, Gerwyn. You say: "It could quite happily do nothing if not in a regulatory gene" but than you say "Will everyone with XMRV... have some health issues? Yes".
And besides, does people with HIV that don't have AIDS have health issues? If not - why do you think that everyone with XMRV will have health issues?

 

[leaves]

there are a lot of variables involved in whether a person who contracts XMRV goes on to develop ME or some other illness.It is complex but in essence it depends where it lands in the DNA.It could quite happily do nothing if not in a regulatory gene.
If in aregulatory gene then different effects are possible depending on the gene titre and system infected. It could be IBS,or endometriosis or elevated rssting heart rate,achlorohydria asthma etc more serious MS type symptoms are possible a bit like having on two or more symptoms of ME.cancer is possible and likely.But will everyone with XMRV get ME-NO.Will they have some health issues yes but if lucky management by palliative measures or not too debilitating All human retrovirus are pathogenic it just depends on the level of pathology they induce

That makes sense; my mum has asthma , allergies etc.

 

[lansbergen]

I don't understand, Gerwyn. You say: "It could quite happily do nothing if not in a regulatory gene" but than you say "Will everyone with XMRV... have some health issues? Yes".

I think when it is inserted in a place in the chromosome where it does not interfere with the proper working of the cell and is not activated it could just sitting there without giving symptoms.

 

[Robyn]

Maybe they should test our saliva next.

 

[Mark]

Feel free to theorize and analyze and brain storm, just do realize that these emotions, fears and concerns are out there.

That's a very good general piece of advice on this forum.

I have been guilty of insensitivity myself in the past here; sometimes in our excited theorising and speculating on here it's easy to forget that there are many real people out there like us, and in different and even worse situations than ourselves, and that we will each deal with the unfolding snippets of news in different ways. We all need to try to be sensitive as we speculate; and at the same time, when frightened by the prospect of bad or frightening news, we should all hold tight and remember that nothing is certain yet, there is much more yet to be uncovered, and how this will all unfold in the next few years, for good or ill, nobody knows.

We are all naturally speculating here, and that sometimes means facing our fears - gently, together. Suggested attitude: Mindful of the worst, hopeful of the best.

 

[bullybeef]

Virology blog.

http://www.virology.ws/2010/05/19/xmrv-in-human-respiratory-tract/

Apologies if already posted.

 

[eric_s]

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

Lol. You are driving me crazy . But i don't want to start a discussion again, so i won't talk about this on and on.

Some people were worrying about what will happen if the general public starts to become aware of XMRV and XMRV is actually dangerous. Since there is no certainty yet about which illnesses XMRV causes, the only way we can try to answer what will happen, is to make some thoughts based on assumptions. This is a CFS forum, so people here only have to be worried if XMRV and CFS are associated, because if that's not the case, most people here will not be XMRV positive.

I think the assumption of a prevalence of XMRV in the population of developped countries of 3% is a pretty good guess (we had the Science study, now this RKI study and the Japanese Red Cross values). If in healthy controls it's between 2 and 4%, then it will also be somewhere in that region (a bit higher of course, but probably not much) in the general poplulation. Or what percentage of the gerenal population do you think won't qualify as healthy controls (are not healthy)? Give them 100% XMRV positivity (which is too high as not every health problem is caused by XMRV or leads to XMRV positivity) and you can calculate how much higher than the 2 to 4% the prevalence in the general population can be at maximum.
Make a better guess, if you like, i'd like to hear. If it's higher than 3% that will mean less trouble for the XMRV positive people, because the more there are, the less possible it's to stigmatize them.

I also think the assumption of 0.3% of the population of developped countries having CFS is pretty safe. That would be ~1 million in the USA. Sometimes we hear even higher estimates.

I don't think you can say that 97% of the people diagnosed with CFS according to the CCC have XMRV.
From the WPI we have heard numbers as high as 99%, but you can't give an exact number since XMRV tests have not been done in large enough numbers around the world and are not reliable enough yet.
But for my calculation it does not matter anyway, because i was calculating for the (until now) hypothetical case, that XMRV is the cause of CFS. And in this case it will be 100% of XMRV positivity in true CFS cases, the others will have been misdiagnosed.

CFS has been around for how long? Around 25 years? So if it's caused by XMRV, which is probably the only case in which people here really have to worry about being percieved as dangerous, then, unless CFS develops a very long time after the XMRV infection, we can say that XMRV is not easily transmitted, because if it were, we would have tons of cases where one person in a couple or family has had CFS and later the other person/other family members got/have gotten ill too. Like in HIV, where it could clearly be seen that it's infectious, even though it's much less easy to transmit than influenza or other illnesses.

 

[bullybeef]

I did read on here somewhere that overall global prevalence was ~6%. It was in an email someone posted.

 

[Mithriel]

I have just found this thread so I am commenting on the whole thing rather than any particular post if you see what I mean.

XMRV is not a very active virus. It doesn't replicate very much at all. A single individual contains HIV with more genetic variability than all the XMRV studied so far. That is why the techniques for finding HIV do not work for XMRV. It has to be coaxed to replicate then cultured before it is present in enough numbers to be isolated by PCR. (I am sure someone on the forum pointed out that the negative prostate cancer studies used a tissue culture that is not very effective for XMRV. Now that they know what one to use it could explain why this German study has been able to find it.)

I feel this low replication explains a lot of ME/CFS. There is not enough in any one tissue to become obviously diseased. The immune system is most affected but not to the extent you get with HIV ans it is still low key. It is enough to make us ill but is not enough to be obvious in the usual tests.

Our varying symptoms could easily be because having XMRV means that other infections, like ebv, parvo, coxsackie B, can get a hold.

In the eighties, the theory was that ME was caused by a retrovirus + genetic susceptibility + a virus like Coxsackie B.

Healthy controls may be lacking the virulent viruses that work with XMRV to give ME or it could be that their XMRV just replicates so slowly that there is never enough to make them very ill, or like Gerwyn says they are lucky enough that the virus doesn't attach itself to an important gene.

The slow replication rate means that it will not often be present in large enough numbers to be infective. Many of us have been ill for decades without any one else in the family becoming ill.

Is bone marrow not one of the places the WPI isolated XMRV. Bone marrow might need to be screened as well. I don't carry a donor card. I wonder if immunosupressant drugs might actually slow XMRV replication.

Oh, and I was a healthy, clean living fourteen year old when I became ill :Retro smile:

Mithriel

 

[omerbasket]

When the Science study was published, Dr. Coffin wrote an article titled: "New virus, How many old diseases?" (or something like that...). As I think of it, I think XMRV might be the cause for many diseases, including ME/CFS, prostate cancer, other cancers (perhaps lymphoma and/or leukemia), fibromyalgia, autism, gulf war syndrome, MS or at least some cases of MS and who knows what (in the following diseases, XMRV was found in different numbers of cohorts in studies: ME/CFS, prostate cancer, fibromyalgia, autism and some atypical cases of MS - so it might not be just my imagination).

Another thing I think about: I think a very good study to see the infectivity of XMRV would be to take people who are XMRV positive and to test their families for XMRV. Now, if you want to see if XMRV is transsmisble in every-day's-activity - meaning via saliva, urine, sweat etc., you would probably want to test families in which you know that one of the children have XMRV (but you didn't already test anyone else from that family), and that is because you don't want to focus on cases were there is a reasonable chance that XMRV have been transsmited during sex that the child was born with XMRV. I think that would be an interesting kind of study, a pretty easy one to make (relatively) and that would be able to tell us a lot of things quickly, before approaching to the scientific experiments that might be harder to do and that the conclusions from them might be more difficult.

 

[IamME]

That's a very good general piece of advice on this forum.

I have been guilty of insensitivity myself in the past here; sometimes in our excited theorising and speculating on here it's easy to forget that there are many real people out there like us, and in different and even worse situations than ourselves, and that we will each deal with the unfolding snippets of news in different ways. We all need to try to be sensitive as we speculate; and at the same time, when frightened by the prospect of bad or frightening news, we should all hold tight and remember that nothing is certain yet, there is much more yet to be uncovered, and how this will all unfold in the next few years, for good or ill, nobody knows.

We are all naturally speculating here, and that sometimes means facing our fears - gently, together. Suggested attitude: Mindful of the worst, hopeful of the best.

So I'm Mr insensitive now, am I? What about my feelings or is whomever gets in first? I feel Leaves has overreacted and left me feeling as if cast as some sort of board villain! I don't see why it should be my responsibility how someone else feels whether it's 10, 20 50, 80 or 99% of +XMRV people *could* go on to get ME/CFS or not. These are all possibilities, some likely and some no doubt extremeley unlikely -- and depending as I say on how a new CFS or XAND is defined as well -- if people don't want to consider these possibilities they shouldn't be reading scary research papers and discussing it on this thread, and certainly not trying to censor other people's ideas (even if they're silly!) As well as being responsible to each other we also have to be responsible to our own limits after all. Both my parents are dead and had multiple serious autoimmune diseases. We don't know what the exact significances of having XMRV are yet. I'm feeling quite hurt and taken aback about all this.

 

[cfs since 1998]

I just want to make a quick comment about the higher percentage of XMRV in the immunosuppressed patients. These are patients that had undergone bone marrow or organ transplant. Rather than thinking that the immune suppression made them more susceptible to the virus, I think one possible explanation is that some of them became infected with XMRV during their transplants. This would basically double the XMRV prevalence among transplant recipients.

 

[eric_s]

I did read on here somewhere that overall global prevalence was ~6%. It was in an email someone posted.

Thanks. If you can find the source, that would be interesting. In this case the result of the same calculation would be that at least 1 out of 18 people who are XMRV positive get CFS. So it would be a bit less scary to the public, but i guess still scary enough, especially when considering that a certain percentage of the other 17 persons might still get other illnesses. But i'm fully aware that my calculation was really only a very quick and simple attempt to get to a guess about the dangerousness and perception in the public of XMRV.

 

[leaves]

I dont want to censor your ideas and I want you to feel welcome in the Forums, and I certainly dont want you to be hurt. Please do not take this as personal criticism. What you said hit me in the face. Maybe it was an overreaction, but that is how I reacted, and I frankly dont think it is such a strange reaction either. I dont think I told you that you should not be free to express your views, i merely pointed out that these theories were both not likely and not in the same category as "discussing the weather". I am sorry for having made you feel bad, that was not my intention.

So I'm Mr insensitive now, am I? What about my feelings or is whomever gets in first? I feel Leaves has overreacted and left me feeling as if cast as some sort of board villain! I don't see why it should be my responsibility how someone else feels whether it's 10, 20 50, 80 or 99% of +XMRV people *could* go on to get ME/CFS or not. These are all possibilities, some likely and some no doubt extremeley unlikely -- and depending as I say on how a new CFS or XAND is defined as well -- if people don't want to consider these possibilities they shouldn't be reading scary research papers and discussing it on this thread, and certainly not trying to censor other people's ideas (even if they're silly!) As well as being responsible to each other we also have to be responsible to our own limits after all. Both my parents are dead and had multiple serious autoimmune diseases. We don't know what the exact significances of having XMRV are yet. I'm feeling quite hurt and taken aback about all this.

 

[eric_s]

Our varying symptoms could easily be because having XMRV means that other infections, like ebv, parvo, coxsackie B, can get a hold.

I read that a lot and i also know that some people (mostly in North America, i think) try to treat those infections. But then, why can't those infections be diagnosed? Or can they?
In my case, for example, doctors told me that they can see that i've had EBV, but from the type of antibodies that were found, they could also say that the infection must have occurred at least 6 months in the past. They never found an accute infection. Is this the case in others? Active viruses?
Because in this case that would be a criterion that allows to distinguish at least some PWCFS from healthy persons. I'm sure in this case there would have been studies that have found that in PWCFS there are more of those viruses present than in the average population. And this would have ended the "is CFS physical" discussion long time ago.

 

[cfs since 1998]

I think one possible explanation is that some of them became infected with XMRV during their transplants. This would basically double the XMRV prevalence among transplant recipients.

I just did a quick statistical analysis. I combined the subjects into two groups; those that had received a transplant in one group, and everyone else in another group. The p-value of the XMRV prevalence between them was 0.02, meaning that the higher prevalence in the transplant recipient group is statistically significant and unlikely to be due to random chance. Then I cut XMRV prevalance in the transplant group in half, to represent the idea that half of them were infected upon receiving their transplants. The p-value was then 0.53, which is not statistically significant. So the hypothesis I posted above is consistent with the statistical data from the study.

 

[MEKoan]

Hi IamME

I totally get where you're coming from. I think we have fallen victim to anxiety at your expense. I don't think you were doing anything that most of us weren't doing but, perhaps, you came along at a critical juncture for Leaves. It happens.

I'm sorry you were hurt, IamME. It's not easy to deal with such scary, unsettling and intimate things without having the occasional dust up.

I know how it is to feel really anxious, Leaves. This isn't easy, is it!

Peace out,
Koan

 

[Cookie Monster]

I just want to make a quick comment about the higher percentage of XMRV in the immunosuppressed patients. These are patients that had undergone bone marrow or organ transplant. Rather than thinking that the immune suppression made them more susceptible to the virus, I think one possible explanation is that some of them became infected with XMRV during their transplants. This would basically double the XMRV prevalence among transplant recipients.

This was pretty much my feeling too - although i said its likely treble the prevalence in transplant patients since if you have a transplanted organ i think its also likely you will also be given some transfused blood too from the blood supply (unlikely the blood & organ would come from the same source/donor).