I recieve the following email from Dr. M. I did post this elsewhere, but it has been suggested it maybe relevant to all:
Regarding the ramifications of being XMRV negative. First of all the current diagnostic testing will define with essentially 100% accuracy XMRV infected patients. The negatives are more difficult as there are additional tests that can only be done in the research lab at this time and not in a clinical setting such as VIPDx. The most important test is to check your blood for an antibody to the virus. If you are positive in the serology test and have an antibody to the virus, you have evidence of infection but at the time your blood was drawn the amount of virus in your blood was below the limit that could be detected by the most sensitive test currently available clinically, which is the the one done at VIPDx. that means while you tested XMRV negative..it could be a false negative.
We are testing the hypothesis that XMRV is to CFS as HIV is to AIDS. There are many people with HIV who don't have AIDS (because they are getting treatment). But by definition if you have ME you must have XMRV.
I make that analogy in presentations because CFS is such a waste basket diagnosis and testing the hypothesis that XMRV is a major player in ME/CFS like HIV in AIDS, will get treatment and research money into biomedical research for XMRV and end the psychiatric bias that has been the history of the disease. Do I think there is only one XMRV?? Absolutely NOT..there is an HTLV2 and an HIV2 both of which have much milder symptoms associated than the variants HIV-1 and HTLV1? What if the first XMRV to be associated with ME/CFS is not the most pathogenic variant. What if there is a much more pathogenic XMRV-2 out there?? In the UK in China??
Maybe the reason others don't find it is because they will not do the BIOLOGICAL VIROLOGY and ISOLATE THE VIRUS like the WPI and VIPDx have done. NO ONE else has even ATTEMPTED the experiments in the Science paper. Electron micrographs don't lie..and a budding virus or immune response cannot be a contaminant..
We do stand behind our hypothesis that somehow XMRV is hurting your immune system so that it cannot fight ordinary pathogens and after a long time of chronic expression of XMRV (or a short time if you have other genetic immune deficiencies) your immune system simply cannot function normally and you become permanently disabled...
Please feel free to discuss my response with your group..We will test everyone that tested negative to see if we can find antibodies in your blood and look for that variant that we describe..that is evidence of XMRV infection. There is so much that we don't know about the virus. Recall that the first isolation of HIV was from a single AIDS patient published in late 1982 and it was not until 2 years later that it was associated with AIDS with the kind of evidence that we put into that first paper. Only a few short years later there were effective therapies. We learned a lot then and we are using every bit of that knowledge from 30 years ago (we were there and have worked on nothing else for 30 years) to understand this human retrovirus. Please don't hesitate to email me directly if you or anyone in the group has questions/concerns. To be clear..I do think even if you tested negative now that you are likely still infected with XMRV or its closest cousin..