XMRV: could it go into remission on its own?

[Rrrr]

As the first post stated, i, too, was very very ill for 1 yr after mono, and then had a sudden "recovery" all on its own (no help from me or modern medicine) and then 7 yrs of remission, and then walking pneumonia and slam!, i got hit hard for the next 20 yrs.

 

[sensing progress]

Here's a theory for outbreaks (Those with more medical/biology knowledge than I have are welcome to tell me I'm full of it. )

Suppose XMRV is transmissable via respiratory secretions, but not strongly so. Other than direct blood-to-blood contact, the infection rate is 1 infection to 10 exposures at most with HIV. Suppose again, that XMRV infection rate is 1 infection to 100 or 1000 exposures and that respiratory secretions are only infectious during some stages of the infection. Then most people's chance of getting infected is relatively small, even when they've been exposed.

We know that a number of factors can affect the immune system in such a way that it doesn't perform optimally -- stress, infection, etc.

Now imagine a small close community where people are together for large periods of time -- schools, hospitals, orchestras (wind instrument players get extra credit for sharing their respiratory secretions with everybody around ). It takes 1 person with XMRV in a highly infectious stage and a group-wide immune function reducing condition (a bad flu, HHV-6A) to spread the infection much more than might normally be seen. This would be especially true if the more infectious stage of XMRV was early in the infection. Then you might have several infectious people in close quarters at the same time.

In summary, I'm speculating that it may take XMRV in a more infectious stage plus an overlapping virus plus close quarters to make an outbreak.

I know, by that logic we should see more significant other cases...... *sigh*

But are there any huge flaws in my outbreak theory?

I like your theory, sickofcfs. Up until now I never really thought that the outbreaks made sense, but you've changed my mind. So thanks!

 

[CBS]

XMRV may be infectious at different stages of it's life cycle, it may need another virus/infection/event to activate it. It may be infectious at different times in different ways.

Or there may be some necessary genetic vulnerability (doesn't explain the clusters unless we're talking about orchestra's comprised of musicians like those in the movie "A Mighty Wind" - obvious inbreeding).

 

[V99]

There may be a genetic component, just like HIV. But there are so many reason why you could get cluster outbreaks. What if the outbreaks are when it's jumped species again? What if someone catches a bug, and that then allows XMRV to spread rapidly amongst people. XMRV cannot be ruled out of explaining both sporadic and cluster outbreaks. We need more research.

 

[CBS]

We need more research.

That says it all.

 

[taniaaust1]

After acute viral onset ME in the eighties, including being bedbound for many years, I had a period of what I thought was 90% recovery but turned out to be remission that lasted about seven years or so. Now I am housebound again after a series of mini-relapses that turned into a big relapse. :worried:

I don't think this is uncommon. If XMRV = ME, how can people get very substantial remissions after years of severe illness? Is it plausible that the body could drive a retrovirus into even partial submission on its own? I received no treatment, just rested a lot.

Sorry if this has been discussed elsewhere! The XMRV topic has got very big!

Sasha my case is the same.. bedbound and housebound for many years. Then a remission (my remission was 100%) for 2-3 years.. only to be hit with it again but this time in a different kind of way. (I call my case slow onset thou as i had "virus" symptoms over and over again with recoveries before being completely permanently hit for years).

All i can figure is this virus shifts.. changes some or something.. so it can rehit. This remission period is noted by those studying the old version of ME. I wonder if it looks different some in those who have had it come back???
...................

Maybe the virus is just like many other viruses which permanently stay in the body eg the CMV, EBV ... and goes dormant if the body is able to fight it but is prone to reactivation again if the bodies defence system is lowered??

 

[taniaaust1]

Here's a theory for outbreaks (Those with more medical/biology knowledge than I have are welcome to tell me I'm full of it. )

Suppose XMRV is transmissable via respiratory secretions, but not strongly so. Other than direct blood-to-blood contact, the infection rate is 1 infection to 10 exposures at most with HIV. Suppose again, that XMRV infection rate is 1 infection to 100 or 1000 exposures and that respiratory secretions are only infectious during some stages of the infection. Then most people's chance of getting infected is relatively small, even when they've been exposed.

We know that a number of factors can affect the immune system in such a way that it doesn't perform optimally -- stress, infection, etc.

Now imagine a small close community where people are together for large periods of time -- schools, hospitals, orchestras (wind instrument players get extra credit for sharing their respiratory secretions with everybody around ). It takes 1 person with XMRV in a highly infectious stage and a group-wide immune function reducing condition (a bad flu, HHV-6A) to spread the infection much more than might normally be seen. This would be especially true if the more infectious stage of XMRV was early in the infection. Then you might have several infectious people in close quarters at the same time.

In summary, I'm speculating that it may take XMRV in a more infectious stage plus an overlapping virus plus close quarters to make an outbreak.

I know, by that logic we should see more significant other cases...... *sigh*

But are there any huge flaws in my outbreak theory?

That makes sense to me. or a group wide lowering condition like polio to spread the infection much more then would usually be seen. In the past when big outbreaks occurred, a polio link seemed to be present. it could be all kinds of outbreaks of various things which end up causing the XMRV to run riot in a community.

 

[alex3619]

Hi Sickofcfs,

It sounds like a possibility to me, but then I have been thinking along these lines for some months. Co-infections are important, and until we have more data we are only guessing as to where they fit.

In my version, outbreaks like the one described would probably involve prior infection with XMRV then activation by a common pathogen, although simultaneous infection (or infection after the immune system is weakened by a pathogen) cannot be excluded. Also, there are issues with other immune suppressants, including alcohol. How often did they party together? Did they spend too much time practicing (regular exhaustion can suppress the immune system)? How about road trips - what conditions were they under on a road trip? In particular I would be looking in their past for one long exhausting road trip during which everyone seemed to get a mild cold or flu and then seemed to get better. So how often did they play in other cities?

Bye
Alex

In summary, I'm speculating that it may take XMRV in a more infectious stage plus an overlapping virus plus close quarters to make an outbreak.

I know, by that logic we should see more significant other cases...... *sigh*

But are there any huge flaws in my outbreak theory?

 

[RustyJ]

Or maybe it is the coinfections that generate the symptoms in some cases. Perhaps in the initial stages. Patient then goes into remission if immune system gets on top of coinfection. Over time XMRV builds up in brain and begins to come into its own.

Also, to explain outbreaks, what if there are multiple triggers. Eg what if an initial infection which is easily transmitted opens the gateway for outbreak situations of XMRV. eg EBV ties up a critical protein (Stat 1?) which then allows XMRV in. So in some cases the trigger is purely genetic (those Stat 1 deficient) in others there is a mass trigger, eg a secondary viral trigger.

 

[alex3619]

PS Clusters will occur in a situation where their is prior infection but a common trigger. This would imply that there are also sporadic cases around the location in most situations, so how wide was the net spread in looking for nearby cases of CFS?

As for beating XMRV, I am sure the body can do it - but since is probably wired in genetically after 4-10 days, complete clearance is impossible and it can always reinfect.

Bye
Alex

 

[Sasha]

Hi Tania - interesting that you got hit after your remission in a different way. My major symptoms (severe physical fatigue after trivial effort, poor concentration, PEM) have been the same pre- and post-remission but some have changed (I no longer have a permanent sore throat but I do have inflammatory pain which is clearly linked to my ME).

During my remission I used to get what seemed to be viral infections like colds but without the runny nose or cough, preceded by the new symptom of inflammatory back pain. I'd be back in bed for a couple of days with the old ME symptoms but they would resolve over about ten days, then I'd have a period of being apparently completely well, then a "cold" would start up again. In my last year of "remission" I had 20 of these episodes with maybe a day of feeling normal between. An immunologist told me I clearly had a viral infection that was reactivating over and over (he told me to exercise on my one normal day between infections so that I'd have a reserve of fitness!). He said the lack of runny nose indicated that these episodes weren't new infections.

XMRV is supposed to be very slowly replicating and hence not to change its spots much so I wonder if it could rehit. Also, being a retrovirus, I am confused about how it could go into remission at all - once it's in your DNA, surely your immune system has no defence?

I don't know about this stuff though, hence my asking the question - I'm hoping those knowledgeable people on the board might have some ideas!

The discussion seems to have moved onto epidemiology (no problem, it's v interesting and I've been wondering about that stuff too) but does anyone have more thoughts on my original question? :Retro smile:

 

[Sasha]

Or maybe it is the coinfections that generate the symptoms in some cases. Perhaps in the initial stages. Patient then goes into remission if immune system gets on top of coinfection. Over time XMRV builds up in brain and begins to come into its own.

Great avatar picture, RustyJ!

In my case, I was classic ME pretty much from the get-go - can't remember when I noticed that my fatigue was delayed by 24 hours or so but it was certainly in the early years. I'm assuming (perhaps falsely) that as maybe the key hallmark of ME that distinguishes it clearly from other stuff, that if XMRV = ME then PEM = ME = XMRV rather than a co-infection. Or maybe it's that coinfection + XMRV = PEM.

But certainly my PEM disappeared during my good years. I really thought I had recovered but was just catching lots of colds.

 

[RustyJ]

Or maybe it's that coinfection + XMRV = PEM.

It could be, although it would be difficult to prove, except by long term study of patient subset, I would guess.

One aside, on the matter of coinfections, if CFS people have on average 30 active(?) viruses, where are the symptoms?

Glad you liked my avatar. There is some irony. I appear to have more in common with an angry old man than I initially thought, with my fumbling efforts to make sense on these forums; discovering that I've just said something someone else has said 2 minutes previously. Or that I can't understand a word on some threads. Cheers.

 

[V99]

One aside, on the matter of coinfections, if CFS people have on average 30 active(?) viruses, where are the symptoms?

Lots of patients have the symptoms.

 

[RustyJ]

Lots of patients have the symptoms.

My symptoms are mainly those every other CFS patient has. For all the talk about the differences in symptoms between patients, in reality they are remarkably similar, varying mainly in severity.They have been attributed largely to a single ARV. I don't see symptoms from 30 other viruses. Yes some people have differences but not nearly enough to account for a fraction of these viruses. Are all the symptoms largely the same for each virus?

Perhaps these viruses are at such low levels, their main impact is to deplete the immune system.

 

[V99]

There are a wide variety of symptoms, signs and abnormalties in patients diagnosed with CFS. These viruses will only present as if one, because they are mixing together in the immune system. With AIDS these viruses start to really show themselves as the patients immune system shuts down, with ME it is a little more subtle, except in extreme cases.

 

[SOC]

The discussion seems to have moved onto epidemiology (no problem, it's v interesting and I've been wondering about that stuff too) but does anyone have more thoughts on my original question? :Retro smile:

I'm no expert on retroviruses, goodness knows, so I'm basing this thought on what little I know (or think I know) about HTLV and HIV....

By themselves, the known human retroviruses don't cause overt symptoms, at least after the original infection and before the final descent into HIV-AIDS or cancer. Possibly XMRV is the same.

Therefore it's possible (probable?, likely?) that the majority of our ME/CFS symptoms are caused by the co-infections or our immune system reactions to those co-infections.

So, I suppose that a person infected with XMRV could, early in the infection, fight off a co-infection and not have any obvious symptoms (be in remission) for a period of time until they encounter another infection (perhaps one that is more neurotropic, or infects heart tissue) that they can't now fight off.... Or maybe the pathogen load just reaches the point where the body can't cope.....

I don't think we know enough about XMRV to make any definite statements about it's pathology, but we do know that many HIV patients stay in what we would call remission in ME/CFS for a long time before they finally succumb to co-infections.

 

[V99]

You put that really well sickofcfs

The important thing to remember, is that XMRV can explain this disease. The question of whether it does is now back with researchers. Our job, as patients and careers, is to fight for research, they may not be happening. Hopefully by Tuesday this will have changed a little.

 

[jimbob]

I had a couple of remission periods after my sudden onset. about 3 wks after onset I was at work (had no choice but to return, even though I was extremely drained) and about 8am everything just lifted and I felt great, however, by noon I was back to square 1! About 3 months later I woke up feeling 90% better and remember thinking it's not 100%, but I'll certainly take it and go on with my life. This one lasted only 10 days and that's been it now for the past 26 yrs. No rhyme or reason I guess, unless the big guy upstairs was just playing with me for some reason.

 

[RustyJ]

You put that really well sickofcfs

The important thing to remember, is that XMRV can explain this disease. The question of whether it does is now back with researchers. Our job, as patients and careers, is to fight for research, they may not be happening. Hopefully by Tuesday this will have changed a little.

True. Must be patient.