FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

[acer2000]

Which brings up the other issue. I agree that FeLV is likely more transmissible than XMRV. But relating to HIV would bring fear of imminent death if no treatment. And HIV has connotation of immoral activity. So I don't like that comparison.

Any other ideas. I thought FeLV was most like XMRV, in that many cats have it but don't get sick. It causes immune system and cancer problems. Of course, if a cat has the immune system problem with FeLV, very likely, that cat will die. But some have a mild form.

The thing about cats is - they lick everything. Thats all they do, all day long. So if its transmissible via saliva for cats, it may have way higher transmission rates between cats because, well... cats lick stuff. People don't lick each other (or themselves) all day long, so this route of transmission might not be as significant for humans.

Plus it may be saliva to blood contact is required (ie cats biting eachother) and not saliva to saliva - I'm not 100% clear on that from reading about FeLV.

Plus it may be only transmissible (at all) during certain phases of infection. This is true in many infections...

Can we say XMRV has some features similar to HIV and some similar to FeLV?

Got to come up with something.

Tina

I don't think we need to say anything. The real answer is "nobody knows yet". So thats what you should say if someone asks. Because it could turn out a bunch of different ways - or not.

 

[ixchelkali]

Hi everyone. First post here. I'm a 33 year old male who became sick after kissing a girl on a date 3 years ago. I got the typical flu sort of illness afterward and haven't been right since. I have all the usual symptoms but thankfully they aren't as bad as some i.e. I'm still fairly functional...hold down a good job, try to exercise occasionally, etc. That being said I feel like a zombie both mentally and physically. I want my life back, to have energy/stamina again, to feel good when exercising, to feel emotion and to be able to think again. I really hope this isn't transmitted by saliva but figured I would let you know my experience. Also since that infamous date I have acquired a long term girlfriend for over two years and she has not contracted my illness. That leads me to believe that either it's a genetic susceptibility or there is a weakened immune that system triggers the bug. Unfortunately if it is a virus, there is little doubt my current girlfriend most likely is now a carrier of it but thankfully she has not gotten sick like i have. I'm going to feel very guilty if I unknowingly transmitted some nefarious virus to her that could end up being a ticking time bomb.

Welcome to the Phoenix Rising forum, STP.

I agree with Muffin that the illness you got from your old girlfriend could have been one of the (many) infections that can trigger ME/CFS. You could have already had XMRV working on your immune system to make you susceptible. In the Dubbo studies (http://aboutmecfs.org/Rsrch/Dubbo.aspx) they found that "post viral fatigue" could be triggered by several different pathogens, and that it was the severity of the triggering illness that predicted who would develop it.

We can hope that now they will go back and test the blood they saved from those studies for XMRV and see if it correlates with who developed ME/CFS.

Though I personally believe that XMRV will eventually be shown to be the underlying cause of this illness, it is still possible that it is another opportunistic infection in those with a weakened immune system and/or genetic susceptibility.

 

[kurt]

Why do you think WPI pulled the Press Release off their site?

Because that was the right thing for them to do. This is not their news to announce. That paper is probably embargoed and until it is through peer review and published it is not fair to the journal to leak information.

Hi everyone. First post here. I'm a 33 year old male who became sick after kissing a girl on a date 3 years ago. I got the typical flu sort of illness afterward and haven't been right since. I have all the usual symptoms but thankfully they aren't as bad as some i.e. I'm still fairly functional...hold down a good job, try to exercise ocassionally, etc. That being said I feel like a zombie both mentally and physically. I want my life back, to have energy/stamina again, to feel good when exercising, to feel emotion and to be able to think again. I really hope this isn't transmitted by saliva but figured I would let you know my experience. ...

I agree with Muffin that the illness you got from your old girlfriend could have been one of the (many) infections that can trigger ME/CFS. You could have already had XMRV working on your immune system to make you susceptible. In the Dubbo studies they found that "post viral fatigue" could be triggered by several different pathogens, and that it was the severity of the triggering illness that predicted who would develop it. .. We can hope that now they will go back and test the blood they saved from those studies for XMRV and see if it correlates with who developed ME/CFS.

Though I personally believe that XMRV will eventually be shown to be the underlying cause of this illness, it is still possible that it is another opportunistic infection in those with a weakened immune system and/or genetic susceptibility.

This type of mechanism, a combination of a specific virus and a genetic susceptibility, has just been demonstrated for Chron's Disease in mice. In this case it is exposure to a particular norovirus when the mouse has a specific gene variant that leads to Chron's within just seven days for the unlucky mouse.

See: Virus Plus Gene Mutation Spurs Crohn's Disease in Mice (this is a short article, worth the read)

This is very consistent with viral onset CFS. I am really looking forward to the less expensive full genomic testing that is reportedly coming soon, within the next year possibly. A few quick full genomic profiles in a CFS group might lead to some surprises, maybe some combination of virus and gene will be found, as has just been discovered for Chron's.

If that is how CFS works, then only a subset of the population would be vulnerable to any contagious elements of CFS. That seems consistent with stp's experience and the many other CFS patients with unaffected partners.

 

[Dainty]

This type of mechanism, a combination of a specific virus and a genetic susceptibility, has just been demonstrated for Chron's Disease in mice. In this case it is exposure to a particular norovirus when the mouse has a specific gene variant that leads to Chron's within just seven days for the unlucky mouse.

See: Virus Plus Gene Mutation Spurs Crohn's Disease in Mice (this is a short article, worth the read)

This is very consistent with viral onset CFS. I am really looking forward to the less expensive full genomic testing that is reportedly coming soon, within the next year possibly. A few quick full genomic profiles in a CFS group might lead to some surprises, maybe some combination of virus and gene will be found, as has just been discovered for Chron's.

If that is how CFS works, then only a subset of the population would be vulnerable to any contagious elements of CFS. That seems consistent with stp's experience and the many other CFS patients with unaffected partners.

Fascinating. Absolutely fascinating.

Speculating that that's true, and guessing that we might also add stress in there, and you've got three factors that all have to line up for you to "win" CFS: genetic predisposition, exposure to active XMRV, and an already weakened system due to physical and/or emotional stress.

 

[alex3619]

Hi

Maybe the solution is to give up on an XMRV analogy and emphasise its uniqueness. "This is different so pay attention..."

On an unrelated matter, it is also possible that XMRV has only very low infectivity (something I have argued on another thread some time ago). This would mean it could essily be in saliva, blood etc, its just that the risk of infection is very low . Now, however, the virus is so common that the very low risk happens again and again and again. Over time this would not be a low risk, just a slow one.

I do like the arguement we are only infective during certain phases such as crashes however.

Bye
Alex

I don't know what kind of analogy to give the population as a whole. The problem is, that as far as we know, there is no analogous illness. We just don't know enough about XMRV or ME/CFS to compare them to much of anything. Probably the best we can do is say that XMRV is like X in this way, Y in that way, and Z in some other way. Not at all satisfying.

 

[ixchelkali]

Okay folks, this is exactly why I don't think FeLV is the best model for comparison to XMRV. FeLV is strongly contagious through saliva and a group of cats (say in a shelter) can spread it among themselves fairly rapidly. We have NO evidence XMRV is transmitted this way and the pattern of illness suggests it is not highly contagious through saliva. If it were, we'd have a much larger infected group and much bigger outbreaks. All I had to do was mention FeLV is transmitted through saliva and WE, of all people, are starting to go off the rails.

We don't know, yet, how XMRV is transmitted, but it does not appear to be highly contagious. HIV is not highly contagious except through certain very specific routes. Blood to blood is very bad. Sexual transmission is somewhere about 1 in 10 exposures to an infected person. We could be contagious in the same way, although I'd expect to see more long-term sexual partners who both have ME/CFS. We'll know more when more people are tested for XMRV, though.

Also, I believe the incubation period, as in HIV, is fairly long. That means if you know you got something from a specific kiss, it isn't a retrovirus. You don't get sick within a few hours after exposure to a retrovirus. Even mono (in it's various forms -- EBV, HHV6, etc) has a 4-7 week incubation period, meaning you won't get sick until a month or two after exposure.

Some of the docs are talking about a double-whammy -- maybe you need XMRV plus something else to get ME/CFS. For example, herpesviruses (HSV, VZV, EBV, CMV, HHV6, etc) are known to reactivate each other an may have a similar effect on XMRV.

Or it may be as simple (hah!) as a genetic predisposition. Something in our immune systems doesn't deal as effectively with XMRV as other people's do, so they extinguish it immediately and we don't. If that's the case, we may be highly contagious, but it only matters if you're one of the 5% of the population who can't extinguish it.

As difficult as it is, we need to wait for the research. In the meantime, don't give blood, use safe sex, and maybe avoid spitting on or tongue-kissing babies, the elderly and others with weak immune systems.

I agree. There is no point in fretting about it until we get the research. Let's worry about WHEN WILL WE GET THE RESEARCH, instead.

I know that we want to be responsible people and not infect others. But we simply don't have the information yet. I know it's hard not to worry about whom we may already have infected (I do it myself), but there's really no point until we know how it is transmitted. Based on the limited epidemiological and anecdotal evidence we have, it doesn't appear to be highly contagious or spread by casual contact.

I believe the incubation period, as in HIV, is fairly long.

I guess it depends on what you mean by "fairly long." Certainly not within hours (even a cold usually takes 2 to 5 days to incubate). The initial acute infection with HIV can happen within days or weeks. Then there's the acute infection, where HIV viruses are replicating like crazy. There are usually flu-like symtoms with that, but not always. That's followed by a latency period which can last for years and years without symptoms. The last stage of the infection is AIDS, when you start getting symptoms and opportunistic infections.

But XMRV isn't HIV. It's not even in the same class of retroviruses as HIV. HIV and HTLV don't act alike (HTLV can take 40-60 years to produce illness), there's no reason to assume HIV and XMRV will.

As I've mentioned before on this forum, I enjoy speculation. Speculation can help the imagination to connect the dots. But I don't think it's wise to act on speculation not based known facts, and I really don't think it's a good idea to get worried until we have more information. We have such limited energy; that's not a productive use of it.

Let's use our energy to figure out how to get research funded.

 

[alex3619]

Hi Redo

It is highly unlikely that lymphoma causes XMRV - this is backwards; XMRV could cause lymphoma, not the other way around, which means that treating XMRV might prevent lymphoma.

Bye
Alex

@Justin Reilly,If XMRV is caused or partly caused by lymphoma.

 

[VillageLife]

CHECK THIS OUT!!!
hey guys check out, Dr Frank Rucettis presentation!!! at about 9 mins on wards, Dr Rucetti says that regards xmrv/CFS for a long time we were alone, but there are 2 other papers in press now, so we now have 3 and he says there are 5 negative papers. (so i think hes saying there are now 3 positive papers!)

-edited - sorry - it may be inappropriate to discuss Ruscetti findings in a public forum; we are checking that out

 

[Esther12]

CHECK THIS OUT!!!
hey guys check out, Dr Frank Rucettis presentation!!! out about, 9 mins on wards, Dr Rucetti says that regards xmrv/CFS for a long time we were alone, but there are 2 other papers in press now, so we now have 3. but there are 5 negative papers. (so i think hes saying there are now 3 positive papers!)


-edited - sorry - it may be inappropriate to discuss Ruscetti findings in a public forum; we are checking that out - Cort

Thanks for the info. I'm not sure I fancy watching the whole thing, but great to have others picking out news like this.

 

[VillageLife]

I think thats what hes saying hopefully others can work it out!

 

[Esther12]

I think thats what hes saying hopefully others can work it out!

I'm slogging through now. I think you're right. Audio quality isn't great, and my head is pounding right now. I'm increasingly coming to terms with the realisation that this is going to take a long time to get fully sorted.

 

[SunnyGal]

Because that was the right thing for them to do. This is not their news to announce. That paper is probably embargoed and until it is through peer review and published it is not fair to the journal to leak information.

Perhaps their new PR firm is already getting things in shape.

 

[Martlet]

Funny how it's not that serious until they might have it. Makes me want to bleed on my PCP sometimes.

Isn't that just the way of things? Haven't you noticed that when someone dies, people ask how old they were, were they obese, did they drink/smoke/skydive/pick their noses with a claw-hammer? It's a protective measure that says "If I don't do that, I'll live forever." They do it with illnesses too.

 

[Eric Johnson from I&I]

So what are the other two negatives? Bridget Huber (at Tufts) and CDC, right?

 

[judderwocky]

So what are the other two negatives? Bridget Huber (at Tufts) and CDC, right?

its possible that with two gov agencies confirming the links... depending on the geographic distribution of their selection pool... that a lot of these other "negative" studies decide not to print... if they're anything like the previous negative studies, it would seem that a lot of them simply aren't capable of pulling off the subtleties of PCR with this virus... as a result... a lot of them may decide to stop while they're still ahead...

or maybe thats just wishful thinking ;p

 

[Esther12]

Isn't that just the way of things? Haven't you noticed that when someone dies, people ask how old they were, were they obese, did they drink/smoke/skydive/pick their noses with a claw-hammer? It's a protective measure that says "If I don't do that, I'll live forever." They do it with illnesses too.

I think there's a lot to that.

I had a friend die recently after she got hit by a truck. I could feel my mind racing to try to find a way to link her death to a foolish or risky decision they had made. The fact this was probably the most sensible and responsible person I've ever met made the absurdity of my response pretty apparent. I think this sort of thinking is behind a lot of people's responses to CFS patients. We must have done something to deserve to be ill - otherwise the world would seem so horribly unfair and uncaring.

I remember reading about one psychology study which showed that people were much more likely to believe that suspected terrorists were guilty if they were told that they had been tortured. We like to pretend the world is fair, and that requires us to blame the victims.

 

[Sean]

Fascinating. Absolutely fascinating.

Speculating that that's true, and guessing that we might also add stress in there, and you've got three factors that all have to line up for you to "win" CFS: genetic predisposition, exposure to active XMRV, and an already weakened system due to physical and/or emotional stress.

Problem is that a substantial number of patients do not report significant 'pre-onset stress', either immediately before onset, or even at any time in their life before onset. It may increase your chances of getting ME/CFS, but it is not a necessary condition, whereas genetic predisposition and exposure to active XMRV may be necessary conditions. In other words, stress may be a generic contingent background factor, common to many medical problems such as MS and heart disease, but not an essential specific one.

 

[Martlet]

I had a friend die recently after she got hit by a truck.

I'm really sorry, Esther.

I could feel my mind racing to try to find a way to link her death to a foolish or risky decision they had made.

I find myself doing it too. It probably really helped during our evolution.

 

[judderwocky]

if cortisol affects the replication rate strongly this would make sense... it could create a large initial pool of infected cells that continue to shed the virus later on.... im curious about what changes they will be able to show infected cells going through... how quickly it will degrade function, how quickly, and how much virus they shed...

 

[Sean]

Problem is that a substantial number of patients do not report significant 'pre-onset stress', either immediately before onset, or even at any time in their life before onset.

Further to that comment: There is also no objective evidence of increased stress (as measured by cortisol levels) in patients prior to onset, at onset, or immediately after onset. The increased cortisol is only found in patients who have been sick for a while (at least six months I think, and only in some of them). Therefore, the most likely explanation is that the serious stress from just having the disease is the cause of the higher cortisol findings. IOW, raised cortisol is a secondary consequence of having ME or CFS, and is not associated with primary causation.

This is a serious problem for the stress genesis model. If there is no objective sign of stress prior to onset, at onset, or in the weeks and months immediately after onset, then how can it be a causal factor in onset, or the perpetuation of the symptoms (at least initially)?