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

[taniaaust1]

I know folk are looking back at hiv/aids and thinking its gonna be the same but things have changed we live in a different world. unfortunately there will always be some folk that are ignorant and predjudice but in my view thats there problem not mine .What happened in the early days of hiv/aids was appalling but to be honest i very much doubt anything on such a scale would happen over xmrv. The world is a far more tolerant place now than what it was back then .

I dont think I'd be the only person who'd think like this and yes it is discrimatory, but if i had young children and my neighbour had a young child with a contagious disease in which "little was known about" and which there was currently no cure (or very costly cures which i wouldnt be able to afford) and which was the transmission of it "wasnt fully known yet" (eg hence it could be saliva), i would keep my child away from that other child. The safety of my child would be priority to me.

Most people i know keep their children away from others with just the flu. (and get upset if another child is sent to school with the flu... "in case it affects my child"

Not many parents will let their children go and play with other seriously sick children if that other child is contagious and ones own child could catch it.

 

[stp]

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. 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 girlfiend 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.

 

[muffin]

stp: Don't feel guilty yet. Actually you can't really feel guilty since you didn't know that you had a virus and that this virus was contagious. We don't know any of that yet. And remember, now that the WPI is involved, the anti-virals may be quick in coming. Actually, some of the anti-virals for HIV and other viruses (in combination maybe) might be already out there and ready to go. So just hold on and make sure your girlfriend's immune system is strong so she can fight off illness.
You probably got mono from the first girlfriend and that's what may have caused the CFIDS. That isn't uncommon either. They actually thought Mono/Epstein-Barr were responsible for CFIDS, years ago. Not now.

 

[bullybeef]

This is a really good topic to get your teeth into (pardon the pun)!!

On the day of the Science study last October, I went to collect my youngest son from day nursery, and one of the staff members was there sat with him on the floor holding a small towel to his face....he'd cut his lip!!! It wasn’t serious, but the instant thought of transmission issue went through my mind. The staff member wore no gloves, and other children we’re playing around him!! I went cold with dread!!

The question then is, when we are finally told how XMRV is transmitted, is it our responsibility to tell our children’s schools etc? And if we still don't know whether we are positive, do we keep schtum? What would you do?

 

[Rrrr]

Hi please forgive me english is not my first language. I did read this forum for some time now, i saw your post that you said you were helped by prayer, if you test negative what do you think you could have been cured of? I'm wondering about this too.

Grishnakh,

Welcome to the forum (or at least to your first post on the forum!)

Warmly,
Rrrr

 

[Mark]

Hi stp. The way it looks to me is, probably the XMRV family of retroviruses can normally only get past the immune system at a time when it's already weakened or under attack by something else. There is also a suggestion that people are only infectious for a short time after they have been infected themselves, or perhaps when the virus is actively replicating due to stress/inflammation/hormone fluctuation. This is all highly, highly uncertain, nothing is really known (publicly) about transmission yet, so it's best not to get too carried away about transmission history until we have more information.

In any event guilt isn't the appropriate response for us. How were you supposed to know this? Sadness, yes, and we'll probably all look back and think "if only..." but we can't change the past. Those who have kept the truth from us - the truth that might have enabled us to avoid getting infected and infecting others - have a lot more to answer for IMO. Some denialists are still arguing that we (not they) are delusional, and we are not really sick, and we should not be discouraged from giving blood - and people with that ostrich mentality have far more to answer for than we do. They are still not informing the public yet...but the truth will set us free...

 

[Mark]

i myself only this week had a couple of religious people come to my door and tell me there is a big plague on the way. (one of those groups who try to get you to join a church in which you then will be saved) . LOL now i know what to say to get rid of them.

LOL!

Key point is that this is not a "new plague", all that is new is that more and more people know about it now. It has probably been around since 1955 at the very least.

 

[alex3619]

Hi bullybeef,

I don't think it is mandatory to tell anyone of suspicion, but I have warned several relevant people and no longer get my hair cut - I do it myself, in a mirror, and sometimes I look like I am wearing a fright wig.

However, once you know you are infected, or once you know your child is, you might have a legal responsibility. Failure to disclose the risk could in some circumstances lead to serious legal liability.

Would someone with more legal savvy than me like to comment?

Bye
Alex

The question then is, when we are finally told how XMRV is transmitted, is it our responsibility to tell our childrens schools etc? And if we still don't know whether we are positive, do we keep schtum? What would you do?

 

[Mark]

The issues raised above are really important things for us to all process, perhaps someone can start an appropriately-titled separate thread?

 

[Mark]

I don't think it is mandatory to tell anyone of suspicion, but I have warned several relevant people and no longer get my hair cut - I do it myself, in a mirror, and sometimes I look like I am wearing a fright wig.

Alex I have literally just got back from having my hair cut, this never occurred to me, what is the transmission risk with a hair cut?!

 

[alex3619]

Hi Mark

There is one emotion that I think is appropriate - outrage! The denialists, the medical profession as a whole (many doctors excepted), medical researchers as a group (also many excepted) and most politicians world wide have allowed this to happen, and ignored decades of public pleas. Outrage, righteous indignation etc are entirely appropriate. When we are well again, we should become politically active and never allow this to happen again.

After all, we were told we weren't infectious, we were told and encouraged to return to a normal life. The fault is with those who told us this far more than it is with us.

(Presuming, as always, that the XMRV research goes where we think it is heading.)

Bye
Alex

HiIn any event guilt isn't the appropriate response for us. How were you supposed to know this? Sadness, yes, and we'll probably all look back and think "if only..." but we can't change the past. Those who have kept the truth from us - the truth that might have enabled us to avoid getting infected and infecting others - have a lot more to answer for IMO. Some denialists are still arguing that we (not they) are delusional, and we are not really sick, and we should not be discouraged from giving blood - and people with that ostrich mentality have far more to answer for than we do. They are still not informing the public yet...but the truth will set us free...

 

[alex3619]

Hi Mark,

The short answer: we don't know.

The long answer: small nicks occur in the scalp frequently when getting a haircut. Small amounts of plasma and blood could wind up on the tools. HIV is unstable and so shouldn't pose much risk, but XMRV is very stable so the risk would have to be higher. This is about risk not certainty, and I am not willing to risk it. Of course, being mostly housebound made this an easier decision for me.

Bye
Alex

Alex I have literally just got back from having my hair cut, this never occurred to me, what is the transmission risk with a hair cut?!

 

[bullybeef]

Hi bullybeef,

I don't think it is mandatory to tell anyone of suspicion, but I have warned several relevant people and no longer get my hair cut - I do it myself, in a mirror, and sometimes I look like I am wearing a fright wig.

However, once you know you are infected, or once you know your child is, you might have a legal responsibility. Failure to disclose the risk could in some circumstances lead to serious legal liability.

Would someone with more legal savvy than me like to comment?

Bye
Alex

Hi alex,

Of course we would have a legal responsibility, dunno why that didnt cross my mind (duh!)

Never thought about something as simple as getting your haircut though (my wife does mine anyway).

Maybe this is a salient point and we do require some official advice of how we should appropriately act. Even the people whom are untested, when researchers report how XMRV is transmitted, we should be made aware asap.

This does now add a tinge of seriousness to the situation. Could you imagine other parents carrying placards outside school gates, and trying to prevent you from taking your child in? Scary stuff!!! It would be very alarming for our young children to witness too.

 

[sproggle]

TBO I'd stopped even thinking about the possibility that it may be transmitted through saliva. It just seemed too much, wouldn't the whole planet be infected?

But if we say it is only (possibly) transmitted via saliva when your viral load is high, then I suppose that is possible. I imagine most of us do not have snogging marathons while feeling like death warmed up! but it is still very worrying &you begin to wonder about a peck on the lips, sharing mugs/glasses etc.. I instinctively do not kiss friends children goobye when feeling fluey but should I do it at all? I now think NOT, why risk it?

I get daily fevers &have never infected anyone close to me with anything remotely similar but then again I have a strong gut feeling that my Mum &brother, at least, are both infected if not also my father. I believe I've had it since birth -had minor typical ME/CFS symptoms all my life when I look back &at times I have worried about both my Mum &brother showing signs although neither have ever been chronically ill.

I'm very concerned that my brother &his wife are now pregnant :worried: I feel I'm going to have to 'spill' on this &say that I can't prove anything &it may not be true but PLEASE be cautious and don't breast feed after 6weeks as it increases the risk of transmission &they really don't want to pass this on!!!!!!! It's hard to even mention as the thought of their child having a chance of being so poorly is just heart breaking, but it simply has to be done..

I'm in the current UK WPI study although not yet had my blood drawn. Will I know my results in the next 9 months? I'm not counting on it &my mum isn't convinced yet (I don't think) that she is likely to have it &therefore my brother is too. I really need another more in depth chat with her about why I believe this is so, I think she will agree with me -at least enough to support my opinion that they should be on the safe side. Then of course it's upto them what they decide to do...

Anyway, I'm sorry if I've gone off point here but it is really playing on my mind at the moment...

Jan xx

P.S. yes I noticed we were 'famous' too, really wish I'd made more effort now &not been posting in my dressing gown looking like I've been dragged through a hedge backwards! Ahem.. hello public!

 

[Esther12]

Seeing as they're not testing blood donors for XMRV, I don't think we need to be telling our children's schools about a possible retro-virus.

I don't think we really have any particular moral or legal responsibility with regard to XMRV at this point. Lets see how it goes.

I wouldn't give blood!

 

[Mark]

Another key point is that if it is transmitted as easily as this, via saliva and haircuts and even in the same ways we transmit the common cold, then given the length of time we are talking about, that model would imply that pretty much everybody has already been exposed. So the question would really be on the other side: what is it about the person getting infected that allows them to be infected at certain times, and that's where the precaution should be applied.

It would be ridiculous, and impossible, to suddenly try to avoid us, given that infected people are maybe up to 10% of the population already and that has probably been the case for decades.

 

[taniaaust1]

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. 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 girlfiend 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.

Hi.. you arent the only one this is happening with http://www.forums.aboutmecfs.org/showthread.php?931-emergency-report-from-China&p=95888#post95888 ..seems bad problem there in which something real bad is being passed around by kissing. I suggested a mutated more serious version of XMRV but one transmitted also by kissing. Then someone today posted on that thread

Hanchuchu,
I spoke to my doctor who is one of the world famous names in research into Chronic Fatigue Syndrome.
He told me that the Chinese government does believe that the epidemic that you have described in China is caused by XMRV and that they are talking to him and many other experts on this illness from around the world. He said that the Chinese government is trying to get information in an informal and secretive way, but that they are NOT ignoring the situation and that they are looking for a solution to help people.

What if there are different mutations of the XMRV happening??

I dont know if you've seen any of my posts about me kissing my ex... everytime I did, I made him ill (glands went up, sore throat, ill for several days). He thou could kiss others without getting sick and I could kiss others without making them sick... but everytime with him, he was ill within 24 hrs. This makes me think maybe as you do that there is some kind of susceptibility in those who get symptoms from us. (my ex was morbidly obese, so not real healthy).

No good feeling guilty.. till we know more about this illness no one is at fault.

I just found out that my eldest daughter is pregnant. Im certainly not going to be kissing that baby once it's born even on the cheek.

 

[kwietsol]

This won't be a worry for long.

Not many parents will let their children go and play with other seriously sick children if that other child is contagious and ones own child could catch it.

I don't think we are going to have to worry about this for long. Back in October, one of the XMRV giants (I can't remember which one) said that because of the way XMRV replicates, scientists should be able to develop a vaccine for it relatively quickly. If there is a public scare, the public is going to run out and get vaccinated as soon as the vaccine is available. Certainly most children will be vaccinated just as they were when the polio vaccine came out in the fifties.

Our kids won't be spreading this because all the non-XMRV folks out there will be immune.

Anyone disagree?

 

[sproggle]

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.

Great that's my weekend ruined, spitting on babies &tongue kissing the elderly are my two favourite things to do!!! :tear:

Thanks for that Sickofcfs we need to keep laughing!

Jan xx

 

[Martlet]

Hi please forgive me english is not my first language. I did read this forum for some time now, i saw your post that you said you were helped by prayer, if you test negative what do you think you could have been cured of? I'm wondering about this too.

That is a very good question. If I test negative, it could mean only one of two things. I had it and was cured or I never had it in the first place. I'd have no way of knowing which and really, it doesn't matter to me. On the other hand, if I test positive, then I suppose it would mean that I'm somehow holding the infection at bay. But really, I wouldn't be testing for myself but rather for my family. Like everyone else, I am concerned about the wider implications of this virus so it would be good to know, one way or the other.