The NJCFIDS Association did a study on this... I think they found that unrelated people living in the same house as someone with CFS were 8x as likely to get it as the general population, and offspring are 14X as likely. Wonder how that increases if both parents have it.
This could possibly be due to things other than XMRV...things like hidden mold or other chemical exposures, heavy metals in drinking water, many other things. I think it's important to keep in mind that a lot more 'healthy' people have XMRV than people who are sick with CFS...and that while rare, people have recovered from CFS before the XMRV retrovirus findings.
I was thinking - how do we know anyone fully recovers if they've never had an XMRV test?! (None of us really know why we are sick until we get a vampire export our blood for $700 and ship it to the American desert - (or dessert if you are dyslexic)... and it comes back positive.
What will happen then? Will we all have a mental breakdown? I'm thinking of asking my dog to read my result to me and bark the results (If I had a dog).
It's rather worrying after all this time to see the result POSITIVE. I wish I had some alcohol to take the edge of. Maybe I could risk it and try and out of date slightly fermenting Kellogg's Pop Tart?
At least with XMRV, it's obvious why no one recovers because a retrovirus is for life, like a mortgage. One certainly would not recover from deaths door with NLP and meditation as it's been postulated by folklore and Balloon Boy Snr. You'd need a heavy dose of anti-virals and lots of other things that boost immune function which unless you go see the three lesser spotted Gandalfs (Lerner, Peterson, Cheney) and are in posession of many tens of thousands of local currency, then it won't happen anytime soon. Tragically.
That should change though when health tourism comes to Nevada and McDonalds construct 23 drive-thru's in great haste and we're texting each other on here in joy and great enthusiasm - now tied up to an IV drip of synthetic RNA. Talking of getting tied up.....
I used to date a s3x maniac (we got on like a red light district). She showed no signs of XMRV - only chronic fatigue. Maybe I gave it to myself each time instead? Seriously. I wonder if you can give it to yourself through naughtyness? (Suffice to say, if she never got it off me, then I was either firing blanks or it's not sexually transmitted). That's a good thing, she only ruined my life and me not hers - and thankfully Madonna hasn't purchased any of our children.
Then again how did I get it to begin with when I was more virgin than Mary? Hmm. Mom you have a lot of explaining to do about the postman. Ohh you have CFIDS too? Err......... Blood bank person you have a lot of explaining to do! No wonder they forgot who when where and why.
I'm quietly confident it's not sexually transmitted as that would surely be a scandal of epic proportions and would then mean it won't just be me trying to find a partner on a dating site.
What would be put on our 'adverts' I'm XMRV positive, wanna cuddle? It may kill you in 30 years, buy hey - I'm hot! How would we ever pull that off, pray tell? I mean (if we were healthier on medications in 2012 - the end of the world). I'd tell people, but it would surely curtail any normal relationship experiences? Would kissing be allowed, or do we use those horrible dental damn things that are used for other navigation purposes 'doon south'? Imagine that, meeting someone in a restaurant on anti-virals and having to put in a gum shield for a snog before a coffee. How romantic! (Almost as romantic as playing 'hide the urine container under the bed, before sunrise' - like I used to with my ex). I knew dad should have built that en-suite......
XMRV. It'd be like a 'new' stigma, people would run out the door when you tell them, not just when they spot the weelchair or the stairlift. We can take it though can't we, we're big boys and girls and made of iron in that respect. (It would be incredibly annoying though to have people dump you when you tell them). Maybe we can set up an XMRV tent city, like a sect? Cort can be our spiritual leader (loud hailer in hand) and Judy M the heaven sent angel that steers us into the doors of the WPI - humming in unison in a deep drone. CNN will be all over it. (Remember the scene from Close Encounters of the Third Kind?). The car exodus on the road. ....that's us very soon.
We'll have to sit on it over Christmas and pretend it's all a bad dream and not really happening, wake up 20 years later or something. Ohh, 20 years have already passed? Geeez. Ok, we'll have to pretend it's not happening at all and we'll converse over the internet for 'social intercourse' instead of se... ............
Now that really would be a nightmare, not that it's happened or anything.
Has it?..........Anyone want a cuddle? I'll wear a gum shield.....
Yes, my husband shows signs. He is not one to go the doctor, so I don't know for sure if his fatigue or lack of get up and go is depression or CFS. Obviously, if he has it, it isn't as bad as me. But he has had one or the other for over five years.
I would not be surprised at all if he has XMRV.
Remember, though, a person can have XMRV and not be sick. So many of our mates may have it, from us, but not show any signs at all.
And I do think there is social life after XMRV positive test. I think there will be a little concern. It all comes down to how it is transmitted.
But, if it is like HIV, thankfully those people have paid the dues in that area, so we don't have to.
I REALLY needed that today.....when I laugh out loud it surprises me anymore....it's like I've forgotten the sound of it or something.....sad because the sound of my laughter is what so many people said they loved about me. I miss it too.......
My husband and I were boyfriend/girlfriend in my late teens, his early twenties. We broke up, went our separate ways. After 20 years we met again, he had developed MS, I had developed ME. Coincidence?
(the nice thing about it is, though, that he remembers me from a time when I was young and healthy. He knows I didn't always use to be this tired and ill person. And vice versa, I know who he was when he was healthy. Somehow this is important for me )
I also worry that I've given this to my partner, who is increasingly having symptoms lately that remind me a lot of mine when I was getting really sick.
I try to keep those worries in the background for now until more is known; there's not much point in fretting over it now, with the general lack of solid information. And honestly, if she is in fact going through something similar, which is not guaranteed at all, it's also quite possible that she had it before we met, meaning we'd have both gotten it independently of each other.
Still, it's hard not to think about some when she increasingly has trouble with tachycardia and vertigo. My logical self just can't always get my little worry center to stuff it, when it comes to that.
bettine -- I can totally understand it being a comfort to both you and your husband that you knew each other before, but interestingly, I have a nearly opposite reaction. I have a really hard time with friends who knew me before I was sick, sometimes because I frequently feel this constant comparison with my healthier self going on, and sometimes because it's hard for people to adjust their expectations of what I can or can't do. It's often much easier for me to deal with people who have always known me this way.
I suppose that would be hugely different, though, if any of them were going through similarly life-altering health problems. I'm sure you and your husband can remember your old selves and simultaneously relate to each other's current realities in a balanced way.
@ Spit, you are right, the two things go together, remembering our old selves and accepting each other's current situations.
But I have the same experience you both have that generally it is difficult to keep up with friends you used to know when you were healthy. Both because of your own comparison with yourself as you used to be, and the difficulty of them understanding how much you have changed and what you can and cannot do.
Only very close friends remain, and even with them it is difficult sometimes, both for me and for them. For them to accept what has become of me, especially the cognitive problems ..... And for me the comparison between how their lives develop and how mine develops. "New" friends are easier to deal with.
@CJBrennan, me too, increasingly my friends are internet friends. And I also worry about the future as we both get older and not any healthier.
But who knows, the XMRV development, maybe eventually we can all improve and have more active lives ......
We have to keep hoping and keeping our courage up (is that English??) somehow ......
Yes, I worry about transmission. I'm not over worried about saliva. My husband and I have started using HIV style blood to blood protocols, at least for the short term, although I think it may be a bit late at this point.
We've extended to protocols to everyone we come in contact with (with no fanfare...we just do it) until more info is available.
we're waiting for testing until the tests improve. A negative result that has a high likelihood of being wrong is not something I want to bank on, even if it might be a sort of emotional blankie for me. I would prefer certainty to expediency and my DH concurs.
We both went through all this in the early days of HIV discovery when there were a whole lot of terrified people out there...and not just the gay community.
I've now got a wonderful husband but previously I told potential partners that I had ME before any contact takes places. Reactions have varied from initial lack of interest to a complete rejection. Media interest, public preception and reports has a lot to do with their initial reactions plus if they have had any family members disabled or with a similar disease.