Friday, October 7, 2011

By what definition?

Exciting development for people who have myalgic encephalomyelitis, known to most of the world as "chronic fatigue syndrome." The Journal of Internal Medicine has published Myalgic Encephalomyelitis: International Consensus Criteria, which lays out a new case definition for the disease ...

Wait ... where are you going?

* * *

If you are not an ME sufferer, caregiver, or advocate, you're probably about to bail. The topic sounds dry and boring. It doesn't affect you directly. There are other things you'd rather do with your time.

Please bear with me. There's a reason you should know about this, and I'll try to make it as un-boring as possible.

Here goes ...

* * *

What's the International Consensus Criteria?

A set of criteria that physicians can use to diagnose myalgic encephalomyelitis.

I'm already bored.

It gets better. Humor me, OK?

Oh, all right. But what's the big deal? They couldn't diagnose ME before?

Not very well. Over the past few decades, several case definitions have proliferated. The worst ones are little more than a wastebasket diagnosis. Essentially, "If you're really really fatigued for at least six months and you've ruled out every other disease we can think of that might cause this, then maybe you have it."

The ICC is much more specific. For instance, to be diagnosed, you must have post-exertional neuroimmune exhaustion, which is a fancy way of saying that you can't exert yourself without causing yourself even more pain and making your symptoms worse. Other diseases that cause fatigue (there are many) don't have that feature.

If you feel like learning about the details, go here. If not, just know that the ICC is much better at distinguishing ME from conditions that are not ME.

No offense, but explain to me again why I'm supposed to care about this? I don't have ME.

Do you like being manipulated? Lied to?

Eh? No ...

OK. If you read the news, you may occasionally encounter a story about how a particular kind of talk therapy (cognitive behavioral therapy) and a particular exercise program (graded exercise therapy) can help people with "chronic fatigue syndrome." Some brand new study proves it! Yay!

What's the problem with that? And what does it have to do with the ICC?

The case definition used in the study makes or breaks the study's validity. The bad ones, as mentioned above, are too broad. Subjects who meet the criteria for a bogus definition may not have ME at all. Maybe they have a different disease. Or maybe they have depression, which can be helped by talk therapy and exercise.

To complicate matters further, subjects who actually have ME are more likely to drop out of the study or not participate at all. Remember the bit about post-exertional neuroimmune exhaustion? Exercise is dangerous for people who have it. If they push too hard, they can hurt themselves—sometimes permanently.

So with the ICC in place, these psychological researchers will realize they've been studying the wrong people? They'll start studying the right people?

Eh, probably not. Other ME scientists have been bringing up the sampling bias problem for years, and the psychological researchers have soundly ignored them.

Oh. What about the media, then? Will journalists call bad scientists on bad science because of the ICC?

Based on what's happened before, also doubtful. Most reporters won't know the ICC exists.

I can see why you'd find that annoying. But to be honest with you, I have my own problems right now. Bigger problems than exposure to shoddy journalism. How does any of this affect me?

Do you consider yourself a good person? A fair person?

See, the issue with these stories is that they imply something about the disease and the people who have it. If sufferers get better with a little talk therapy and exercise, then ME can't be that big of a deal, right? And when you hear about people who go on disability because of "chronic fatigue syndrome," you think they must be getting away with something. How dare they take taxpayer money when all they need to do is see a shrink and do some sit-ups?

When these news stories convince you that ME isn't a big deal, they turn you against your fellow human beings. They succeed in stealing your compassion.

That kind of sucks, when you put it that way.

It does. But now that you know ME means a lot more than "tired all the time"—and that it responds badly to exercise—you can't be played by a press release.

At some point, another story will be published about how talk therapy and exercise help people with ME. When you see it, you can ask, "By what definition of ME?"


DeppityBob said...

Excellent post. I'm sharing this one. Thank you for helping to spread good news.

Anonymous said...

Really great post, Cinder Bridge. Thank you.

Anonymous said...

Wow, Cinder!
And super clever and creative writing also!

cinderkeys said...

Thanks, guys. Feel free to forward this post to healthy friends and family members. :)

Anonymous said...

Very well written piece drawing the casual reader in.You get the unmotivated to read on and find out about a key issue of me/cfs, diagnosis and the effectiveness of treatment. I was diagnosed in 2007, never bed bound and have ups and downs. I do have a good quality of life now after feeling quite ill for a few years. I do ask the question though do I really have CFS? I feel guilty that I have made progress when others still suffer. I have to watch my level of activity. For me I'm retired it doesn't matter so much what label my condition has. I know I'm not well and how to manage my condition. But others, well for a host of reasons it matters so much. Correct diagnosis is so important to research and support progress for those with CFS and for others with other debilitating conditions. Thank you Cinder x