Friday, December 25, 2009

My XMRV results

I participated in a study run by the lab, Cooperative Diagnostics, located in Greenwood SC.  They received blood samples from about 50 individuals with severe to moderate CFS/ME.  The criteria for inclusion were PEM (post exertional malaise) and being at 50% or less capacity on the Bell scale of functioning for at least six months at some time during your illness.

The lab report wrote:
The two strains of XMRV found by Lombardi et al in chronic fagieu syndrome that were sequenced had roughly 6 bases that were different from prostate cancer XMRV.  We used these strains in addition to prostate cancer strains and several strains of murine leukemia viruses (MLV) in the design of our test.  In contrast to published tests for XMRV that have been designed in highly variable DNA regions in the MLV family ... we chose to design our initial test to use the pol gene so it could detect all MLV species, including XMRV.  This means we tsted a DNA sequence that has not changed in hundreds or even thousands of years on an evolutionary scale in the MLV family.  This test would be more apt to detect XMRV than any other test used.  Therefore, we would likely have more positives than previously reported in PCR tets for CFS when XMRV is actually present.
We also used a superior test sensitivity, enabling the detection of 10 to 25 times few viruses in a blood sample than previously reported tests for XMRV.  This was proven when we were able to detect XMRV in 1 infected 22Rv1 cell from a commercially available prostate cancer cell line in a background of 2.5 ug of extracted DNA from blood. We also designed a second test with the same performance characteristics of the first.  This allowed us to also evaluate the env genes, creating an extra confirmation step in our testing.
My result was negative.

One the one hand, I'm glad.  I don't want to have a retrovirus.  Don't want to worry about passing it onto my partner.

On the other hand, it leaves me wondering where we are on this journey to find the cause of CFS/ME.  There was so much excitement when the Whittemore Peterson Institute findings came out in early October.  Since that time, many individuals have tested negative.  And while some have tested positive, it leaves us wondering if XMRV could simply be another opportunistic infection, like HHV6, or EBV, or Coxsackie, or mycoplasm, rather than a great step forward in CFS research.

Some individuals who did testing through WPI were found negative by PCR (the kind of testing I did) but positive by viral culture.  (See the link to Joey's blog, http://pathogensoup.blogspot.com/)  This leaves me wondering if I would also test positive for viral culture.

My doctor says that none of the patients he has been treating for several months are coming back positive for XMRV, either through Cooperative Diagnostics, or through the VIP lab in Reno.

So upward and onward.  Lots of things are showing up wrong in the urine and serum tests I've been taking as well as the muscle testing I did in Florida.  Hope to have the energy and time soon to tell you all about it.

"Merry Christmas to all, and to all a good night."

4 comments:

  1. Hi Janis. I found out last month that I am positive for active infection with XMRV through VIP labs (DNA PCR). My fiance, also with severe ME/CFS (wheelchair bound) is also positive. I'm curious what your results may be from VIP labs. Anyway, here's hoping this means you indeed have one less thing to worry about! :)

    ReplyDelete
  2. Hi Laurel, I am not glad you and your fiancee have XMRV, but at least it does confirm its role in severe cases. I wonder if I once had it -- if antibody tests get developed, I will do them, or if Medicare decides to pay for viral cultures, I'll do that.

    ReplyDelete
  3. Very interesting stuff. I dont suppose you know what results CoopDx got in this study? There is more info on this thread, including a poll in which 8 of 8 got PCR-negative results from CoopDx:

    http://www.forums.aboutmecfs.org/showthread.php?t=1290

    Apparently no one at this forum (namely Cort's) knows anyone who got a PCR positive from CoopDx.

    Overall, including the statement from the Koch-Institut regarding yet-unpublished data, XMRV news (including a bit of semi-rumorish info on the forums) seems more mixed than I anticipated it would be.

    ReplyDelete
  4. Hi Eric, I put my results into the poll. Do you have a reference for the Koch-Institut statement?

    ReplyDelete

Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.