I have been trying to keep up with all of the controversy surrounding the CFS XMRV research that has been going on since last October and it it weren’t for the CFIDS Association, I wouldn’t be able to make sense of any of it. If you haven’t already noticed, I am a huge supporter of this organization and I donate money monthly to them to try and help do my part for all of us suffering. While I was catching up on some reading on their site tonight, I wanted to make sure I passed along the XMRV updates the CFIDS Association keeps on their website. They have been following all of these studies very closely and feel like most of us patients that the subsequent studies that have been done are not sufficient to the first one.
So here are some of the updates thanks to the CFIDS Association and from the president, Kim McCleary.
A team from the CDC fail to detect XMRV in blood specimens from 51 individuals with CFS and 56 healthy people (Retrovirology 7, 57, 2010). Meanwhile, a paper reportedly accepted in the Proceedings of the National Academy of Sciences USA describing the NIH-FDA findings is delayed for publication while the researchers conduct additional experiments.
The US American Association of Blood Banks joins Canadian, Australian and New Zealand officials in recommending against blood donation from people with CFS.
The NIH’s Harvey Alter allegedly announced at a closed meeting in Zagreb, Crotia that NIH and FDA scientists had independently confirmed the link between XMRV and CFS. In his PowerPoint presentation, Alter wrote that the data in the 2009 Science paper “are extremely strong and likely true, despite the controversy,” according to the Dutch nutrition and food supplement magazine Ortho.
The Dutch team and two more research groups from the UK and Australia challenge the original paper’s methodology in a series of technical papers in Science (328, 825, 2010).
Canada becomes the first country to recommend that individuals with CFS should not donate blood or blood products for fear of passing on the suspected virus.
Three independent research teams—two from the UK and one from the Netherlands—failed to detect significantly elevated levels of XMRV genetic material in their own samples from a total of 388 people with CFS (PLoS One 5, e8519, 2010; Retrovirology 7, 10, 2010; BMJ 340, c1018, 2010).
Mikovits and her colleagues report traces of XMRV DNA in the white blood cells of 67% of a group of 101 people with CFS, compared with only 4% of healthy controls (Science 326, 585–589, 2009).
Spurred on by these mixed results, the FDA’s blood products advisory committee met for two days in late July to discuss whether the virus poses a safety threat to the blood supply. Here are the facts they had to consider:
Several research groups have failed to reproduce the initial finding, including a team from the US Centers for Disease Control and Prevention (CDC), but scientists at the National Institutes of Health (NIH) and Food and Drug Administration (FDA) reportedly have unpublished data supporting the link between the mysterious virus and CFS. “When the data are published, they will provide a confirmation of our initial discovery,” says Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada who led the research.
Last year, a Nevada team linked a peculiar retrovirus to chronic fatigue syndrome (CFS), an elusive condition with no known cause. The virus—known as xenotropic murine leukemia virus–related virus, or XMRV—had previously been implicated in an aggressive form of prostate cancer, but XMRV’s role in both diseases has been hotly contested, particularly with regard to CFS.
The cause of CFS, also called myalgic encephalomyelitis, had long remained elusive, and the disease had been neglected by science. The study created hope that CFS might become treatable with antivirals. Some patients even began to take antiretroviral drugs used by HIV-infected people. But the paper also created worries that XMRV might spread via the blood supply.
Mikovits has not published anything in the scientific literature since 2012. But she soon began to promote the XMRV hypothesis again, and attack the Lipkin study that she agreed had put the issue to rest. She has weighed in on the autism debate with controversial theories about causes and treatments. Her discredited work and her legal travails have made her a martyr in the eyes of some.