• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Funny yet serious!

Francelle

Senior Member
Messages
444
Location
Victoria, Australia
Anyone else somewhat cautious, (if not paranoid - lol), about transmission of XMRV within the family?

In the absence of having yet been tested for XMRV and all the other unknowns about this retrovirus, I am trying to be careful in the home, especially in the kitchen. Tonight though - a funny thing happened!

My son said he wanted me to show him how to cook a certain dish. Partway through I said, it is good to do a taste test to see if the flavours are ok. I took a sip with a fresh spoon and then put it on the sink. Quick as a flash my son picked up the spoon and put it in the 'brew' and tasted it. So uncharacteristic of him!! I nearly spluttered with fear or mirth, I don't know which.

It's funny - yet serious really but has this kind of thing happened to others?
 

HopingSince88

Senior Member
Messages
335
Location
Maine
I did for a while think I should carry my own eating utensils with me. Then I remember seeing something about XMRV only being able to live outside blood for 10 seconds. Does anyone else recall that? For this reason, and the fact that HIV is not transmitted in saliva, I don't worry about this too much. But I totally get your concern (and humor).
 

Stone

Senior Member
Messages
371
Location
NC
I think if it were that easily spread, there would be many many more people with it. I realize that 4% of the (so far) healthy population is quite a lot of people, I still think that if one could easily be infected with XMRV by eating after an infected person, that 4% would be WAY higher, and there would be many more sick people. But yes, I certainly share your concern. My worst concern is about passing it on from parent to child. Myself and all of my siblings have CFS. We all three lived in different areas of the country when we became ill, and all at different ages. My oldest sister was 27 and lived in San Diego, I (the youngest sister) was 33 and lived in North Carolina, and our middle sister was 45 and lived in Florida. My sister in Florida has a daughter in college who so far is well, thank God. My San Diego sister was not able to have children due to her CFS. I have two adult children: one daughter who has had CFS since age 17 and one son with very severe and disabling ADD (which he's had since age 4). My son coincidentally married a woman with CFS and they have a 1 year old son. It's him, my grandson, I worry about. My heart is in my throat whenever we have to take him for vaccinations. I can't take the stress of it anymore, and after carefuly weighing the risks, we have decided not to take him for any more vaccines until we know his XMRV status and we plan to have him tested for XMRV as soon as it's possible. Perhaps if he is XMRV positive (like maybe he's not????), we can do all that's possible to hopefully prevent him from getting sick. I look at Majic Johnson, who's been HIV positive for many years and as far as we know isn't sick, most likely because he's appropriately treated to keep the virus at bay, preventing him from going into full blown AIDS. I'm worried, yes, but at least there is a course of action to take, thanks be to God. This all assumes XMRV is the culprit behind CFS, and I believe it is, at least in the case of my family.
 
Messages
44
Hi Stone,

I hope you have contacted Dr. Judy/Whittemore Peterson with your family CFS history. You certainly sound like a good case study.
 

SunnyGal

Senior Member
Messages
147
It's funny - yet serious really but has this kind of thing happened to others?

Oh yes, I think about these things as well. The worst is when I've cut myself while making dinner for my family. XMRV gives a who new outlook on cutting yourself with a knife in the kitchen!

I do try to not expose my my kids to any of my saliva. From not sharing utelnsils to turning my head any time they try to plant a kiss (usually big and wet, especially from my youngest) on my mouth. I even try to keep my kids from sharing utensils. And yes, when food has gotten contaminated with my saliva I have been known to eat it all myself or throw it out!

So yes, I'm somewhat cautious, although I wouldn't officially call myself paranoid about it at this point. :)

Sunny