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.

ME/CFS in the media: A snapshot of the turning tide?

The New York Times published a story Wednesday about what the Whittemore Peterson Institute's XMRV discovery means for ME/CFS research.

[T]he study pointed to a physical cause for an illness that the medical establishment had often snidely dismissed as psychosomatic. The research could not be ignored: it was published last month in Science, one of the world’s pickiest and most prestigious journals.

If you're even passingly aware of the history surrounding ME/CFS, the article won't say much that you didn't already know. Still, it's worth a click-through and a glance just for what it tells us about the media's perspective on this disease, and how it may be shifting.

First, the article itself is pretty sympathetic. Note the use of the word "snidely" in the above excerpt. Note the lack of an interview with some random psychiatrist who claims (without providing any evidence) that it's all in patients' heads. There is a one-line quote from William Reeves of the CDC to that effect, but in context he comes across as an idiot.

Second, check out the photo at the top. Notice anything unusual about the photo?

That's Andrea Whittemore-Goad, a longtime ME/CFS patient and the daughter of the woman who founded the Whittemore Peterson Institute. She's using a nasal cannula for oxygen.

I've looked at my fair share of newspaper stories about ME/CFS. When they include a visual, it's usually stock footage of someone who looks (a) tired, (b) depressed, or (c) tired and depressed. The NYT photo is the first mainstream media image I know of that suggests sufferers might actually have medical needs.

Better late than never.

Once an album, always an album

Commenting on my last post about whether our music is happy or sad, Leigh said of two of her favorite Cinder Bridge songs:

And yet both are not on the cd (which I initially typed as "album", showing my age :) ). *grumble*

OK, first, Leigh should be unashamed of her verbiage. Highways and Hiking Shoes IS an album. An album is simply a collection of musical tracks, released together in a certain order. The White Album by the Beatles is still The White Album. It is not, as one DJ rather appallingly called it, The White CD.

Second, Leigh is showing her age (mine too), but not for the reasons she thinks.

A friend of mine once told me that half of people under 16 have never bought a CD. A lot of those people will probably never buy a CD. They get all their music online.

So if you insist on associating the word "album" with vinyl, then you may have to call recent releases "MP3s." Except that MP3s are individual songs. You can download them separately, or you can buy a bunch of them together as the collection known as ... wait for it ... the album.

ALBUM ALBUM ALBUM! S'there. Also, get off my lawn!