XMRV! Is it a band? Is it a car? Is it a hot new computer game or a cool new radio station for fans of recreational vehicles? No, XMRV is a virus, a retrovirus that is at the heart of one of the top scientific discoveries of 2009, recently listed as number 55 on the Discover Magazine Top 100 scientific stories of 2009.
And for millions of people around the world who now suffer, or are about to suffer, from a range of debilitating illnesses, what we have learned about XMRV in 2009 could prove to be the most important discovery of the decade.
So what is XMRV? It’s short for Xenotropic Murine leukemia-Related Virus, and it could be a very bad thing. Just read the ominous title of the 2006 research paper that first brought XMRV to light: “Identification of a novel Gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant” (Urisman A, Molinaro RJ, Fischer N, et al. March 2006, PLoS Pathog). Even the pictures are scary. The one on the left was labeled “XMRV proteins are expressed in cancer cells, as seen in this section from a human prostate cancer. Cells showing brown, granular staining are malignant prostate cells that express viral proteins.”
(When I first started to read about XMRV some lines from Sympathy for the Devil, the Rolling Stones classic, came to mind: “Pleased to meet you, hope you guess my name; but what’s puzzling you is the nature of my game.”)
The nature of the XMRV game is exactly what scientists have been trying to figure out since 2006, and in 2009 they established a strong connection between XMRV and two serious diseases: prostate cancer and Chronic Fatigue Syndrome or CFS (a.k.a. Myalgic Encephalomyelitis or ME).
CFS is a debilitating condition that makes daily life miserable for some 17 million people worldwide. Sadly, the physical misery of CFS is compounded by lingering prejudices that lead otherwise sensible people to dismiss all CFS sufferers as malingerers, attention seekers, mentally disturbed or just plain lazy (often reflected in sentiments like these: “Hey, we all get tired, just suck it up!”).
We will return to CFS in a moment, after considering these latest XMRV findings. Here’s what Discover Magazine says of the connection between CFS and XMRV:
XMRV is one of only three known human retroviruses, infectious agents that slip into our genome and become a permanent part of our DNA. Cancer biologist Robert Silverman of the Cleveland Clinic isolated XMRV three years ago in men suffering from prostate cancer. The men had an immune defect that allowed the virus to proliferate, much like a defect documented in patients with chronic fatigue. Seizing upon that clue, cell biologist Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, tested 101 chronic fatigue patients. In October she reported that 67 percent of them had the virus, as opposed to only 3.7 percent of healthy people. Tests on another 200 patients revealed that more than 95 percent of people with chronic fatigue carry antibody to the virus. (Read more from the original report…)
So why is Cobb’s Blog interested in XMRV? You may remember that the blog got very medical about 15 months ago. That’s when my wife found out she suffers from hereditary hemochromatosis (that’s haemochromatosis for listeners in the British Isles, a.k.a. Celtic Curse, iron overload, and bronze diabetes).
Whatever you call it, this is a nasty condition that causes iron to build up in soft tissue where it eventually does serious and potentially fatal damage to important bits of your body like the liver, heart, kidneys, and so on. But nasty as this condition is, Thanksgiving 2008 found us giving thanks to the doctor who figured out the hemochromatosis diagnosis.
Why? Because hemochromatosis is easily treatable (for a certain value of “easy”). Once you convince the doctors to bleed you a few times a month the iron concentrations come down and you can keep them at bay with regular bloodletting. What we didn’t realize is that before it was treated the hemochromatosis had done some serious damage to my wife’s endocrine system.
As a result, she spent all of 2009 in a fairly constant state of pain, fatigue, sleep deprivation, and hyper-sweat. (That last term is not a medical one, but we have yet to find a term to describe this phenomenon–it is to hot flashes as hurricanes are to a misty morning; or put it this way, one of these sweat events can turn a t-shirt into a very damp rag in about 10 seconds, and that can happen several times in an hour.)
2009 was also the year of the supplements: cortisol tables to offset adrenal insufficiency, thyroid tables for thyroid deficiency, and HGH for–you guessed it–human growth hormone deficiency. Yet as the year wore on and the blood lettings continued and iron levels decreased, the levels of these other substances started returning to normal or even excess. Last month the doctors said to taper off all supplements. But at no point during all of this has my wife felt any better. She spent most of the year laid out on the sofa in the living room, unable to handle stairs, unable to manage even basic household chores.
Then, just before Thanksgiving 2009, the doctor settled on a diagnosis: Chronic Fatigue Syndrome. If you’ve ever been handed this diagnosis you know it’s a classic case of good news / bad news. The good news: there’s finally an explanation for why, 9.5 days out of 10, you feel like death warmed over. The bad news: there’s no cure; treatment is expensive and does not alleviate all the symptoms; many people see no difference between CFS and laziness, so moral support may be hard to find.
Of course, once we heard this diagnosis we started our research. That meant hours of web surfing and the creation of a bunch of new Google alerts (that’s when you tell Google to send you an email if there is any news about a particular subject). And that’s how we learned about XMRV and the link to CFS. Although CFS was not on our radar when the XMRV connection was first reported back in October, Google noticed the year-end coverage in Discover Magazine and alerted us (thanks Google!).
So where does that leave us? Many people suffering from CFS/ME are hoping their condition is now validated as caused by an outside agent and they can get beyond the “all in your head” syndrome. Obviously, there is fresh hope for new, more effective treatments for CFS/ME. There could also be improvements in the treatment of related conditions like MS, and fibromyalgia, not to mention prostate cancer, which kills 25,000 men a year in America alone. (See this link for more on XMRV and prostate cancer.)
Realistically, there are still way more questions about XMRV than answers. The widespread existence of a previously unknown retrovirus has a whole bunch of worrying implications for the entire population (there are very few retroviruses but the best known is HIV). Scientists are rushing to answer questions like: Is XMRV contagious? How is it transmitted? Is it present in the nation’s blood supply? Does it cause CFS and prostate cancer or do those conditions allow it to be contracted?
I will post some more links on these topics when I get organized. I just wanted to put this stuff out there while I had some extra time this New Year’s weekend. And to thank those scientists who have been working on expanding our knowledge of this beast named XMRV. Their work in 2009 gives us hope that 2010 will be a better year.