XMRV testing in US

[Dainty]

I apologize if this is already clear to others...I looked around and couldn't find it.

If I want to get tested for XRMV in the US, which test should I request, and why? I assume it would have to be through WPI?

Please don't recommend I join a study instead....much, much too ill for that, but I'm grateful for those doing it.

 

[redo]

The WPI doesn't test commercially. The US option right now is VIPdx, which is licenced by WPI's licencing company.

If you could afford it, I'd take both the culture and the serology. The serology test isn't available yet (to my knowledge) but should be within a short period of time. I think they let you store a sample for serology if you send the samlpes now.

I don't know the cost.

The website is www.vipdx.com

Good luck.

 

[Dainty]

Thank you, redo.

 

[Daffodil]

i thought the serology was available starting july 1?

 

[Lynn]

I called VIP dx on Thursday. Please understand that I in no way represent VIP dx and this is just what I got out of the conversation.

The serology test is not available yet. They are hoping within the next couple of weeks. They don't have a price yet, but they estimate it will be about $250.

I also asked whether I would need to have the culture test as well. The person at VIP dx said it was too early to tell the exact accuracy of the serology test (it is a research test). She said that right now she would advise me to just get the serology since they think it will be pretty accurate (but of course no guarantees).

I hope this helps someone else.

Lynn

P.S. Last 2 Days to vote for PANDORA (They are trying to build a center to research CFS and like illnesses). Please see my post http://www.forums.aboutmecfs.org/content.php?184-For-Non-Facebook-Users-Vote-for-PANDORA

 

[Dainty]

That was helpful, Lynn, thanks.

 

[omerbasket]

Thanks Lynn. I guess that if one takes just the serology test, and it comes back positive it would be very reasonable to not purcahse the culture test, at least assuming that "positive for XMRV" is positive for XMRV, without false positives. If one takes the serology test and it comes back negative, than perhaps it would be wise to take the culture test also - at least if VIP Dx. Themselves don't claim that the serology test is 100% accurate.

 

[xrayspex]

I have the culture test in hand, just need to get blood drawn, didnt do it yet, but now don't know if should wait for serology one. I am sort of eager just to send one in asap esp in case they they get inundated after Harvey's study gets published.
Any scientists here that could explain to me whether it matters much if I do one or the other or both types of tests and what is the difference?

 

[SilverBee]

Hi, I'm new here and hoping to learn lots of helpful things. My question about XMRV has to do with how it "comes" to us? I haven't been tested, neither have I been officially diagnosed. However one physician accepted my suggestion that my symptoms were similar to CFS. She finally prescribed Lyrica, and I got immediate relief for certain of the symptoms. So, I guess we, jointly, decided that was a correct diagnosis. Then I moved from California to Tennessee, and my doctor here has begun calling it fibromyalgia, again without the tests I understand will support that diagnosis. She has continued the Lyrica as well as all the other meds I need to stay on an even keel with everything else.

Now, to my question. As soon as I read about XMRV and its connection to prostate cancer I've wanted to know if my CFS could be related to the fact that my husband and I had just spent ten years in one clinical trial after another combating his prostate cancer. Not that it changes anything, but I've really wondered how these symptoms just came upon me and changed my life. Any answers? Thanks in advance.

 

[usedtobeperkytina]

SilverBee, the straight answer is we don't know.

There are likely transmission routes:

Blood seems very likely. Jerry Holmberg with some agency that watches over blood safety said it would be foolish to think it is not transmitted through blood transfusion.
Parent to child, through sperm or egg or through mother's milk is likely.
Sexual relations, likely.

These are based on where the virus is found and the history of other retroviruses.

Now, others are much more up in the air.
Saliva? Well, it is in the saliva, but that does not mean it is transmitted that way as some other viruses are found in saliva but not transmitted that way.
Coughing? in the air? We don't know. It would not fit the pattern of other retroviruses. Yet, outbreaks have occurred between people that you would not think could catch it any other way, such as teachers who share a break room.

But the way this virus seems to move around, pop in and out, brings up the theory that is might be transmissible by different ways at different times and be more contagious, if you will, at different stages.

Anyone else want to add to this or correct me?



Tina

 

[Mya Symons]

Anyone know if the VIPdx serology/antibody test is ready?

 

[V99]

August I believe.

 

[ukxmrv]

I was told mid-august the last time I asked VIP dx. The problem is that it just keeps getting longer and longer each time I ask. Obviously we want them to do a great job and not be rushed - on the other hand we have patients wanting to be tested. Also the prevous negative patients. Hope this is sooner rather than later.

 

[usedtobeperkytina]

Well, they announced July 1. They shouldn't have announced unless they knew for sure. Sloppy.

Tina

 

[birddog]

does anyone understand why the Virochip is not being used to test for XMRV.............with the depth of viral detection using the Virochip should we demand a large CFS research study to define sub groups?