Friday, August 27, 2010

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!

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

I'm going to call this an improvement.


DeppityBob said...

For suckering us in with the seriousness of your subject, tone, and approach, then smacking us with the funny mouse comment, I bestow upon you ten thousand internets. Spend them wisely.

Otis said...

Thanks Cinderkeys,

You got to the heart of my concerns with recent press coverage. I too am very happy to see the apparent shift toward accepting the physiological cause of ME/CFS.

But, the focus on mice photos and mouse viruses is hiding the fact that these are human viruses still trivializes (sp?) the severity of condition.

There appears to be a large focus on the confusing nature of the research and CFS history. The general public isn't getting the clear message that this is a human viruses "dormant" in 10-20 Americans alone and that it is in the blood supply.

All the best,


Jannie Funster said...

I think the world would be much better off in general if journalists actually investigated rather than regurgitated, as they mostly do. However, the tv networks who do regurgitate have ratings reflecting just that. I'm amazed they stay on the air at all.


Wacky Lisa said...

I've felt like there's been a difference in the articles but I couldn't put a finger on it. Recently, even a non-sick friend posted one on Twitter since it was science based. I've just been too brain foggy to put my finger on the difference.

cinderkeys said...

Dep: I'll try not to spend all those internets in one place.

Otis: I think the reports make it obvious that the viruses are in humans, even if they're called mouse viruses. But yes, the part about said viruses being in the blood supply is strangely absent.

Jannie: Totally agreed. Another thing you really start to notice when you read a lot of articles on the same subject is how similar they are. That's when you know they all came from the same press release.

Lisa: The tonal differences are easy to spot even through the fog, eh? :) Hope you unfog soon.

johnz said...

Today no one needs to suffer with CFIDS, treatment is already known