I’ve been informed that the management at the WPI has decided that there will be no group in the clinic. The physicians will practice independently, rather than as the academic department I had envisioned. Thus there is no need for a clinical director and I have been given my pink slip, returning to volunteer status. I am disappointed by this decision, but remain completely supportive of the institute’s goals and the scientific effort. I still hope that further consideration will be given to my ideas in the future, when there are fewer obstacles than now, believing that a group would be a better way to manifest the translational research goals of the institute. I’ve launched the Physician Working Group and hope that the sharing of ideas in an ongoing way by this international group of medical practitioners will bear fruit.
I am relieved that there is no longer a question of who I am speaking for here. I write from my multiple perspectives as a doctor, a patient, the mother of a patient, the wife of a nearly recovered but symptomatic patient and the mother of a healthy son with subclinical signs of the illness. My practice is growing and my intention is to share my clinical impressions going forward. This is the 97th blog I’ve written in 15 months. I’ve never gone back and reread it, but from where I stand now, other than changing the URL to the plural, treatingxmrvs, I still believe pretty much what I’ve written. I am continually refining, but the basic concept hasn’t changed. Our illness is of retroviral origin, plus genetics, environment, injury. But a paradigm shift will be required to understand what has happened. That’s why the etiologic agent has been so hard to find. It isn’t one virus, one illness as required by the old paradigm. There’s too much sequence diversity, as Judy Mikovits and Frank Ruscetti have been reporting since the first negative studies. Too many viruses and parts of viruses. And people are working on it. A group in Wisconsin just uploaded sequences to GenBank that suggest more diversity than everybody has been looking for in all the negative PCR studies: Partial molecular cloning with novel consensus PCR primers of the murine JHK retrovirus of human origin, a variant of the Xenotropic murine leukemia virus-relatedvirus (XMRV): Xenotropic MuLV-related virus 5′ LTR, partial sequence; and gag protein (gag) gene, partial cps
The current technology is knocking at the door of solving it. Deep sequencing is beginning to be available, but still very expensive. XMRV has not yet been fully sequenced. VP62 was made in a lab from pieces of viruses taken from multiple tumors. Does it even occur naturally? It has been shown to be infectious in monkeys, but their antibodies don’t detect the strains present in humans, suggesting it’s different than whatever is infecting those humans. Zhang et al’s findings indicate that normal correct lab technique for retroviruses isn’t good enough for XMRV’s, which are not fastidious like HIV. Normal technique does not prevent spread throughout a clean lab in a matter of days. Therefore the contamination issues are serious and our best hope is that somebody develop a reliable serology test that picks up the whole group. A sensitive enough RT (reverse transcriptase) assay seems like it should work too.
Oddly, just as I was writing this, the following came through on Co-Cure:
The FDA is investigating vaccines for contamination by a variety of latent viruses, including XMRV. They believe that cancer- and tumor-causing latent viruses may become active during the vaccine manufacturing process, and that some of these viruses are hard to detect with standard methods.
“Xenotropic murine leukemia virus-related virus (XMRV) is a recently discovered human retrovirus that has been found in both chronic fatigue syndrome and prostate cancer patients. Although these findings need further confirmation, there is a potential safety concern regarding XMRV in cell substrates used in vaccines and in transmission by blood transfusion and blood products. We are developing sensitive detection assays for XMRV to evaluate cell substrates and investigate virus transmission by blood transfusion in a monkey model.”
Read the entire article at
This is truly wonderful news!
From Age of Autism and Kent Heckenlively:
FDA to Investigate Vaccines for XMRV Retrovirus