19 questions about XMRV

[Samuel]

Thanks everybody for support. I am working on collating responses to a Co-cure post.

Love your questions Samuel.



Some of us have been wondering about some of these questions but haven't been able to articulate them so well. Also, some of them are way beyond what I could think to ask, but so glad YOU can think them! I didn't notice any "silly" questions among them.

But I DID notice there were just a few more than 19 questions. I want a recount!

And many more!

 

[Samuel]

Samuel,

You are aware that you are, for the most part, asking these questions of lay people? Many, if not most, of these questions are beyond the scope of anyone other than the researchers directly involved in the work.

...

peace to you,
Koan

Hi Koan,

I know that many of the questions are not answered yet, but I do not know which ones.

I do hope that there are people here who can answer some (not all) questions like this. This forum has well-spoken, knowledgeable people.

I also know that many people including myself are often very fogged, and these are tricky questions to cogitate on through fog. It was difficult to write them. But I hope that those who are interested can concentrate on one at a time, pace themselves, and together we can answer a few, that kind of thing. Maybe.

Also, they might help serve as a focus when good study results start coming out. A checklist to keep things in context and to be able to refer to. At least for me. Maybe for one or two others also?

 

[Martlet]

Originally Posted by _Kim_ View Post
I worry a whole lot about transmission - if it's in saliva, does this mean that I will never kiss again?

I'm not even remotely worried about kissing. If I am positive, then my husband would have needed the immune system of an ox not to catch it from the various means of transmission between couples.

 

[oerganix]

Social leprosy

This illness has already caused isolation in my life, from work, play and relationships. So, a different kind of isolation is OK by me, if I can have my illness validated, and perhaps a treatment/cure found for it. Just to be able to work again and stop living in poverty would be worth it to me.

Also, transmission cannot be as simple as kissing or sex since no one I have kissed or had sex with had this illness, and no one has developed it after having sex, or just kissing, with me.

For those who worry about forming a relationship with a future spouse or lover, I have noticed several heartwarming stories of people who have "caught" a man even though they already have this disabling illness. True love conquers all - at least sometimes. People with herpes still fall in love and get married. So, don't stress out on this one. You are still going to be lovable.

Not yet, but all of us need to begin to get emotionally prepared for what is likely to happen if and when the WPI's work is replicated and a rock solid causal link to our illness is found.

If this work precedes solid and conclusive research on the method of transmission, we all need to be prepared for life as social lepers.

Let me make one thing clear: I am not suggesting that their will be quarantines of patients or other conspiracy theories.

But still, if the causal link is conclusively proven, the tremendous media coverage we have seen following the recent WPI announcement will pale in comparison to what is going to happen. It's going to become common knowledge that ME/CFS (or XAND) is caused by XMRV and is a god awful illness (imagine all of your friends having seen a respected physician like Dr. Klimas on every TV channel stating that she would rather be infected with HIV than XMRV) and caused by a virus similar to HIV.

HIV already scares the living hell out of people, and it's extremely well documented that transmission of the virus is impossible outside of sexual contact or exposure to blood. That being said, how many people would feel comfortable eating with silverware in a restaurant that we knew was previously used by someone who is HIV positive?

Imagine every single media outlet repeating the following sound byte:

"ME/CFS (XAND) is an illness worse than AIDS and is caused by one of three viruses in existence similar to HIV. Moreover, unlike HIV, this pathogen may be transmitted by saliva."

Again, research has a long way to go before something like this is likely to happen. A causal link will have to be proven, and an explanation offered for why for some who harbor the virus do not take ill.

For years and years, all of us have hoped and prayed that the seriousness of our illness would be recognized by physicians, the government and those around us.

With research having essentially gone nowhere for the past 20 years, I don't think that a lot of us thought about the consequences that might occur if our wishes were granted. I know that I didn't.

As the saying goes, "you better be careful what you wish for--you just might get it!"