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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi Mentalist (love the user name!!!).
Two questions please:
1)
Would someone with RNase-L problems associated with ME/CFS be more likely to be XMRV positive do you think?
I see the blood test for RNase-L is available from America on the VIP website.
RNAA = RNase-L test.
$475 - $795 with other assays included in the price.
2) If XMRV can activate oncogenes that cause cancer, can people get a blood test for this yet?
Thank you.
I think I read on this forum that not everyone had abnormal Rnasel that tested positive for XMRV in the study, but I have long stopped being able to find stuff on here, so I am not even positive about that. Good questions, but I do not know the answer to your other questions, but maybe someone will.
Some patients have also asked about the test available for RNASE panels at VIP lab, which tests for the original immune defect that pointed to XMRV. We found this test does not have clinical value, nor does it seem to show whether a patient is likely to have XMRV. A recent study of 38 CFS patients at GMA, tested with the RNASE panel, found it was not helpful in directing treatment at this time. Dr. Mikovits study on CFS patients also found the RNASE panel did not indicate who would have XMRV.
Postive PCR does not mean it's active, and negative PCR with positive culture does not mean it's latent. Whoever refers to the WPI/VIP tests as active and latent are simply using the wrong terminology, nothing more to it than that.
To "link" XMRV to CFS, is it then enough to just take the PCR/culture test from VIP? Shouldn't one also take the antibody test? Perhaps no treatment is needed if just the antibody test is positive, but one will know if the virus may have been involved in the process? Some people are upset about their negative PCR/culture tests (which I can relate to), shouldn't an antibody test be a part of "the test package"? As long as this test adds another 28% to the XMRV connection, according to the WPI?