- Dr. Cheney Reports - in his latest newsletter – or at least that part of which is available for free – Dr. Cheney reports news on the serology tests emanating from VIP Dx. Earlier Dr. Mikovits noted that antibody tests picked up more positives than PCR tests.Dr. Cheney noted that 2 out of the three people who tested negative by PCR later tested positive by antibody tests. Overall 83% of his 47 patients have tested positive. He expects the percentage to rise to 90% when all the serology results are in – putting the number right about where Annette Whittemore suggested when XMRV broke. It appears from his numbers that the antibody test may add maybe another 10-15% to the percentage of positives.
Rather startlingly Dr. Cheney reports that 60% of family members without CFS also tested positive but the numbers tested were very low (10 ) and therefore could change dramatically. Nevertheless, if they are ultimately validated, they would indicate that XMRV is quite infectious – not a surprising finding given the mostly anecdotal evidence to date; XMRV appears to be a more robust virus than HIV and may be able to survive in the saliva and semen and cervical fluid.
How odd it is, though, that the positive rates VIP Dx reported in its testing of putative CFS patients – somehow around 50% as I remember- are lower than Dr. Cheney appears to be finding in family members and exposed controls without CFS (but perhaps with other problems)…or maybe it isn’t ‘CFS’ being such a vague category. Dr. Komaroff reported recently that a significant percentage of people diagnosed with CFS by primary care doctors don’t appear to have it – thus a certain portion of people that the VIP Dx may not have ‘it’ whatever it is :). In any case, the high rates of XMRV postive patients in Dr. Cheney’s practice vs the lower rates in VIP Dx at large are yet another small but perhaps telling validation of the WPI’s initial results because if XMRV is a more or less ‘CFS-centric’ bug then we would expect higher rates in Dr. Cheney’s practice than in other practices that do not focus on CFS.
What we don’t know, from this short excerpt, is what Dr. Cheney or VIP Dx considers a positive antibody result. When you get to the level of clinical testing – a single positive result is never considered determinative – it’s always backed up another positive test. Dr. Singh in her patent application requires two positive antibody tests for a sample to be considered positive. Determining what combination of tests will, in the end, constitute a true positive is a thorny issue, one that the BWG will have to grapple with at some point.
- Blood Working Group Meeting - Put it on your calendar – Dec 14th/15 – Dr. Mikovits said the BWG hoped to be complete with Phase II by this meeting. Hopefully they’ll be able to meet this target.The Group put together a summary of Workshop that included sections on both the positive negative studies and which included this interesting line….” In contrast to the previously reported findings of close genetic relatedness of all XMRVs in patients with CFS and in PC from different geographic regions the amplified gag gene sequences revealed a genetically diverse group of MLV-related viruses” How odd that the more widespread group had less genetic variability than the localized group….It’s another XMRV oddity, for sure, which presumably has something to do with the different testing methodologies.
In any case the BWG appears to have fully incorporated the Alter/Lo and Hansen studies into their protocols – they are now looking for MLV’s -not simply XMRV.
They are, of course, not alone – the Alter/Lo paper shifted the ground on XMRV – Dr. Mikovits Dec 2nd talk in Norway (what a pleasant place to visit in Dec!) will be on ““XMRV and other MLV’s in ME/CFS”.
The BWG’s conclusion was that everything’s is about as clear as mud – but! – we are working on it.. “The science of MLV related viruses in humans is still evolving. While many laboratories have detected MLV-related sequences in prostate cancer samples, others have not. The frequency of positive samples varies widely between laboratories. There is controversy about the detection of MLV-related sequences in CFS with the majority of laboratories failing to detect MLV sequences. There are ongoing studies to determine whether technical issues, such as extraction methods or primers and/or subject selection including clinical criteria and geographic issues might influence the detection of MLV sequences.”
Of course we expect clarity and are disappointed (and worried) and if its not forthcoming. In a recent Newsweek article Dr.. William Schnaffner, an infectious disease specialist, suggested that we should neither expect clarity at this point or be disappointed that it has not appeared ““Cutting-edge science is often not definitive,” says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. “Keep your seat belts tight.”
- That Newsweek Article - is empathetic and well-written and well worth reading. In it Dr. Andrew Mason, after referring to the battle over decades long battle over the cause of ulcers, argues that anti-retroviral trials are the ‘the only way to win this battle’. Dr. Lipkin would not agree stating “Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can. But the first order of business is to determine if the association is real.” Dr. Lipkin is clearly intrigued by ME/CFS – he is engaged in two studies – but it took the NIH almost a year to get his study off the ground – hardly a sign that they’ve been working as rapidly as possible. Still, when they did get into gear they did so in big way – hiring one of the top pathogen detectives to lead the search.
- Dr. Deckoff Reports – http://treatingxmrv.blogspot.com/ – meanwhile Dr. Deckoff and her daughter continue to slowly improve. It’s not dramatic..it’s slow drips over time that she notices over the months rather than the days. They are charting functionality using the Karnovsky Index and both have pushed past 80 for the first time. One of the surprising benefits for her has been a reduction in peripheral neuropathy (nerve pain) that can be very painful.
- Test Results - meanwhile there have been a flurry of test results on the Forums. Several people received positive results by culture and negative results by serology at VIP Dx – rather the opposite of what one might expect at first – but perhaps suggesting a poor immune response to the virus (or an antibody test that needs some improvement). Another person with milder CFS (myself) tested positive by culture (it took a long culture) – suggesting that viral loads were really low and I but had a strong antibody test – which I was told could be protective (which might be why viral loads are so low???). I had gradual onset and Dr. Mikovits noted that others with gradual onset have tested positive. There appear to be several different variations and the science, of course, is still evolving…… One of Dr. Peterson’s patients who tested positive by WPI tested negative by Dr Jay Levy – a virologist who was associated with CFS in the early days.