It's the virus, stupid

(Cross-posted at Behind the Surface)

Since my boyfriend, A., arrived a week and a half ago, I have awakened each morning to his succinct report of the most interesting news story of the day such as the latest creepy cop video on Reddit or the most recent Obama capitulation to the Republicans or the insurance industry.* But Thursday when I woke up he said that there was no news, nothing at all interesting to report.

"So today, October 8, 2009 will be the day forever known as the day of no news," I joked.

But alas, it was a huge news day for ME/CFS patients. As I turned on my laptop and read that Dr. Judy Mikovits, the hero of this post, had found the retrovirus that may well cause ME/CFS, I teared up. From relief that the retrovirus was finally found. From hope that maybe I might soon get my life back. From anger that I might have a virus I could be passing to my boyfriend and the government agency charged with understanding and informing us about communicable diseases -- the Centers for Disease Control -- has spent the last quarter of a century doing little to figure out what exactly has been making us so sick.

For the last few weeks I've been plodding through Hillary Johnson's tome, Osler's Web, which details the history of ME/CFS, what the Whittemore-Peterson Institute is now calling X-Associated Neuro-immune Disease (XAND) or more informally I.T.V.S -- It's The Virus Stupid. From the very beginning of Johnson's narrative an unknown retrovirus plays a prominent role. Indeed two weeks ago I spent my Saturday night reading about retroviruses on Wikipedia and whatever else I could find on Google, so I was actually rather prepared for Thursday's announcement. I already knew that there were only three other known human retroviruses, HIV, which causes AIDS, HTLV 1, which causes a type of leukemia, and HTLV 2, which causes a type of lymphoma. That retroviruses integrate themselves into the host's genome and are contained in RNA which then inserts itself into DNA -- rather than the other way around as is the case with other viruses -- making them impossible for the immune system to clear and wreaking havoc in the process.

True, we can't yet say that XMRV is the cause. A part of me is still afraid to celebrate as there have been so many possible breakthroughs in the past that have turned out to be, at best, anemic. But then, we've never had a study with someone like Frank Ruscetti among the study authors, one of the nation's top cancer researchers who used to work with Robert Gallo, a co-discoverer of HIV. We've never had a journal as prestigious as Science treating ME/CFS like the serious, debilitating illness that it is. We haven't had skeptics like molecular biologist John Coffin go from doubtful to proclaiming they will be celebrating in the clinics where these people [with CFS] are being treated. And while the Science study may be small (101 patients), Dr. Judy's group developed even more sensitive tests after submitting that paper that have found XMRV in 95% of 300 ME/CFS patients as well as 500 patients in the UK.

Not that it has impressed the guy at the CDC who should have found this virus, as this paragraph from NatureNews suggests:

William Reeves, principal investigator for the Centers for Disease Control and Prevention (CDC)'s CFS public health research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS".
An illness like CFS? That psychosomatic, "mind-body condition" Reeves has been studying by looking at whether patients were abused as children and were making themselves sick by feeling too much? Yes, I can see how these findings were "unexpected and surprising." I mean, it's not like the man who heads the Chronic Viral Diseases Branch at CDC should have actually thought an illness like CFS would be viral in nature.

But like a cruel, corrupt, and ultimately inept warden who is suddenly caught out by the authorities and the inmates turned over to more competent hands, one can only hope that William Reeves and his pals Peter White and Simon Wessely will fade into the shameful history of ME/CFS/XAND as Dr. Judy and her lab find what patients and a handful of doctors have suspected all along: it's the virus, stupid.

*It took me several minutes to believe him when he told me Obama won the Nobel Peace Prize as I was sure it was a joke. But that's a subject for another post.


I don't think we can say that XMRV causes CFS--not even in some people. CFS would be a misdiagnosis for people with XAND. We need to peel away all the people who are XMRV-positive from Reeves' fuzzy disease definition and put those people into a completely different disease category.

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