Always darkest ...

While idly scrolling through Facebook Monday morning, I encountered a number of links like this:

Study finds contamination in virus link to fatigue | Reuters

Scientists conclude mouse virus does not cause ME | Society |
The Guardian

Chronic Fatigue Syndrome is not caused by XMRV |
Wellcome Trust Blog

This looked bad. The headlines implied that some new discovery had invalidated all research linking ME/CFS (myalgic encephalomyelitis, aka "chronic fatigue syndrome") to a retrovirus. That contamination in the laboratory had skewed the results. Was it time to throw up our hands and look elsewhere for answers and possible treatments?

Eh. Not exactly. Despite the definitive tone of those headlines, and despite the researchers' bold claims, the latest studies only show that contamination is possible with a particular kind of test. They didn't refute the positive studies, which used four different methods of detection.

From Amy Dockser Marcus of the Wall Street Journal:

Robert A. Smith, a research assistant professor at University of Washington in Seattle who wrote a commentary in Retrovirology summarizing the studies ... said he is unwilling to state that the reported link between XMRV and CFS or prostate cancer is no longer viable.

The papers focus on various problems associated with a specific kind of test used to detect XMRV but does not examine every method used to detect XMRV. Smith pointed out that some of the previous papers on prostate cancer found XMRV integrated into the patients’ DNA and "I can’t come up with a mechanism where there would be contamination there.”

(Full story here.)

In other news, today marks the winter solstice—the shortest day of the year.

After today, bit by bit, the days grow longer and lighter.

XMRV: One year on

One year ago today, we saw the publication of the Science paper linking ME/CFS to a retrovirus called XMRV.

Since then there have been a bunch of studies that failed to replicate the Whittemore Peterson Institute's results—none of which were true replication studies. Since then we have seen one study that linked ME/CFS not with XMRV, but other MLVs.

Since then, the Whittemore Peterson Institute opened its new facility at the University of Nevada School of Medicine.

The pace is picking up. Progress makes me hopeful.

It also makes me impatient.

Donate.

ME/CFS and the blood supply

With evidence of a link between ME/CFS and a family of retroviruses, there's been talk of potential contamination to the blood supply. 7 percent of the healthy controls in the recent Alter study tested positive for an MLV (murine leukemia virus). All of them were blood donors.

Remember why this kind of thing is a big deal?

Anyway, Canada, New Zealand, and the UK have already banned ME/CFS patients from donating blood (though the UK is saying it's to protect the health of the donors). The United States hasn't followed suit, at least not yet. From the Associated Press:

No one knows how people become infected, but Alter said a major study is under way to see if there's any evidence of transmission through blood.

In the meantime, federal regulations require that blood donors be in good health, said FDA's Dr. Hira Nakhasi.

So apparently we aren't worried about those healthy donors who have MLVs yet.

ME/CFS in the media: M-O-U-S-E

Journalists writing about ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) generally strive to appear fair, balanced, and neutral. But when you read a lot of articles about "chronic fatigue syndrome" (which is what they usually call it) you start to notice subtle shifts in tone.

A more skeptical piece will note that many physicians consider ME/CFS to be psychological in nature. In and of itself this is a perfectly true and neutral statement: many physicians DO think it's all in patients' heads. Unfortunately, the writers almost never question this information, leaving the reader to believe that it's a matter of opnion—that there's no scientific evidence to prove those doctors wrong.

Other articles will mention that lots of people consider the disease controversial, but that now, in light of [insert most recent scientific discovery here], it looks like ME/CFS is actually a real thing! While this is better, such articles usually fail to mention all the previous research which also indicated that ME/CFS is actually a real thing.

With the publication (finally!) of the Alter et al paper, the language is becoming friendlier. Take this exposition from the New York Times:

Chronic fatigue syndrome, estimated to afflict at least one million Americans, has no known cause and no accepted diagnostic tests, although patients show signs of immunological, neurological and endocrinological abnormalities. Besides profound exhaustion, symptoms include sleep disorders, cognitive problems, muscle and joint pain, sore throat and headaches.

Note the lack of the word "psychological." Note how the language implies that the failure to find a cause is merely a failure to find a cause, not a lack of a real effect.

And what about the visuals?

Traditionally, almost every time stock art has accompanied an article about ME/CFS, it's been a person (usually female) looking very sad and kind of tired, often with her head in her hands. Because people with "chronic fatigue syndrome" are really tired, and very sad about that ... right?

OK, I realize we can't blame the journalists too much for this one. They need some kind of picture to depict a disease with the name "fatigue" in it, and maybe that's as creative as they can be on tight deadlines. It just gets on my nerves.

The tired-sad-person photo hasn't vanished completely. However, with the release of a study about how murine leukemia viruses (MLVs) are linked to ME/CFS, papers now have a brand new go-to image!

Photo by animalphotos.info

It's a mouse virus! Get me a picture of a cute mouse!

I'm going to call this an improvement.

Alter paper released!

It's here.

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

The whooshing sound you've been hearing all day? That would be the collective exhales of everybody in the ME/CFS community. The paper is out, and the results are positive.

Highlights:

• Alter et al did NOT find XMRV (xenotropic murine leukemia virus-related virus) in either the ME/CFS subjects or the healthy controls. However ...
  
  
• XMRV is a member of the MLV (murine leukemia virus) family, and they did find other MLV-related viruses in 87 percent of the ME/CFS subjects, as compared to 7 percent of the healthy controls.

The Whittemore Peterson Institute, which found a XMRV-ME/CFS link back in October 2009, is psyched.

For a more in-depth review of the findings, the implications, and the backstory, jump over to CFS Central.

Onward!