Thursday, October 15, 2009

Update-XMRV Testing

I just spoke with VIP Labs again due to some conflicting information I've been getting.

They are now saying that they are about 30-45 days away from releasing the test because they need to get the test licensed and determine quality control and validation (that the test actually tests for what it says it tests for).

I'm not sure why I and others who contacted them were originally told the test was available now but I think its a good thing that they are being cautious and making sure its a valid and reliable test.

7 comments:

  1. Well, with my cynical hat on, perhaps they wanted to make sure you bought the test from them, rather than a rival lab.

    Or perhaps it was just a mistake.

    Wonder how long it will be before we can get tested in the UK?

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  2. Ah, now that makes more sense. :)

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  3. Thanks so much for the update, Terri! I really appreciate you making the effort to go right to the source. I've posted a link to this post and your previous one on testing at my own blog. Isn't this all so exciting!

    Thanks!

    Sue

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  4. Hi, Terri -

    That's great that your doctor is prescribing LDN! It has helped me more than anything else in my 7 years with CFS. Here's my summary of my experience:

    http://livewithcfs.blogspot.com/2008/04/low-dose-naltrexone-treatment-for-cfs.html

    If that link doesn't print completely, it was my April 4, 2008 post - you can find it through the monthly archives in the left column or by typing low-dose naltrexone into the search box.

    I'm overdue for an update, but basically I still take it and it still helps.

    My advice? Start with a very low dose - 1.5 mg or even 0.5 mg - and slowly work up. Some with CFS can't tolerate it. Its only real side effect is vivid dreams but that usually only lasts one week or so (I didn't notice anything at all). I take 3 mg. I tried going up to 4.5 mg, and all my CFS symptoms got worse, so it's a fine line.

    Good luck! Let me know how it goes.

    Sue

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  5. One more update on the testing for XMRV. I just talked to VIP labs since I was originally told that the kit was mailed to me last Tuesday. She told me that there was a slight delay because they had to complete the licensing procedure but that they will begin mailing out the test kits a week from today (Friday). She said they have hundreds of requests and will be mailing them out in the order that the requests were received, so some will get them sooner than others.

    This makes sense to me. WIP is a research facility so just because they were using VIP for their testing doesn't mean that VIP has approval for clinical testing -- that is testing in the general population. Also, by getting this license, it means that insurance companies just might pay for the test.

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  6. Hi Terri - Thanks so much for keeping us updated with this info. I will definitely be getting tested at some point.

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  7. I personally know of at least two other labs that are going to be offering this test. Keep checking google. They will pop up soon!

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