Tuesday, May 5, 2009

Introducing ME/CFS

It's always tough to create a 25-minute set list. So many tunes, so little time. But when we were choosing songs for last weekend's Tucson Folk Festival, one had an automatic in: Everybody Knows About Me, the closest thing we've got to a protest song. We figured folkies would respond well to it.

I introduced the song with my standard rap:

"I wrote this next song about someone living with undiagnosed myalgic encephalomyelitis. If you've never heard of that, it's probably because most people refer to it as as 'chronic fatigue syndrome,' which is a STUPID name for a very serious disease."

One neat perk of playing the Folk Festival is that the people running sound record everyone's sets. They handed us a CD of ourselves right after we finished. So, first chance I got, I played the CD for the person who inspired "Everybody Knows About Me." He couldn't come out to see us because he was too sick. He rarely leaves the house.

He listened. After he complimented us on a job well done, the following conversation ensued (extremely condensed/paraphrased):

Him: "You shouldn't mention 'chronic fatigue syndrome.' It gives people the wrong idea. Just call it myalgic encephalomyelitis."

Me: "How will that help? No one knows what myalgic encephalomyelitis is.* The audience would sympathize with people who have ME, then continue to treat people with chronic fatigue syndrome badly because those people are just tired and lazy."

Him: "They'll make the connection. They'll understand that it's wrong to be prejudiced regardless of what the diagnosis is."

Me: "Eh. I doubt it."

What do you think? Do I shoot our cause in the foot by invoking the very name that promotes the bad stereotypes? Or is it better to bring the stupidity of that name out into the light?

* * *

* For those of you who are reading this from somewhere other than the U.S., the vast majority of Americans have never heard of ME. When I say "myalgic encephalomyelitis," the response is always a blank stare, followed by, "What's that?"


rachelcreative said...

Well I can see it from both sides.

I think the worse crime is to say "Chronic Fatigue Syndrome that was once called Yuppie Flu" which every British newspaper seems to do when it has an article on ME/CFS.

The name Chronic Fatigue Syndrome doesn't do patients much favours. But it *is* what I have been diagnosed with. Doctors in Britain do not tend to use ME as there is contention with that name on medical grounds.

However, when you see how many people are dumped with a CFS diagnosis only to discover later that they have something totally different to ME after all ... well you can understand why the patient community can be so twitchy about the CFS label.

You can see how this in turn can devalue research and undermine the sufferers who have "proper" ME (I hate using that term but my words are failing me today). So often the fight is to get proper recognition and research for ME without muddying the waters with including other patients who may have other underlying disorders (sometimes rare, sometimes simple).

But I also know that as someone who's doctor won't write "ME" down as a diagnosis it's been easy for me to feel isolated and 'not deserving' of using ME. That for having a diagnosis of CFS (which is the government standard term here in the UK for ME) that maybe I'm not a "real" ME person.

The blank looks don't worry me when you say "Myalgic Encephalomyelitis" (or "Myalgic Encephalopathy"? Another contentious issue). There was a time when people hadn't heard of MS, Muscular Dystrophy or autism. Only talking about it got the names and conditions commonly known.

Like you say, not acknowledging that many people who have ME are diagnosed with CFS, CFIDS, Post Viral Fatigue Syndrome, Chronic EBV amongst others, are you doing them a disservice? Or in pushing for ME to be better recgonised and diagnosed are you fighting for a better future?

It's not a simple answer I'm afraid. You're *not* going to get a consensus from the ME patient community on this one! So you have to weigh it up and decide for yourself what to say or not to say. Or if you're still stuck my advice would be to find a patient organisation who seems to be a good fit for you and follow their lead.

Don't be disheartened. Keep using your voice. I for one am grateful of the work you are doing. It's a drip drip effect I think, but a single drop can cause a ripple.

Willow said...

I tend to say ME/CFS because that 1) acknowledges the proper name of what CFS should be describing and 2) reminds everyone that the health authorities are supposed to be treating a serious neuroimmune disease under the name of CFS.

But yes, CFS is a stupid, oppressive name. It's an insult in and of itself. We don't call diabetes "Chronic Thirsty Disease" or bronchitis "Acute Coughing Syndrome" or MS, "Chronic Stumbling Ailment." That's the equivalent of what has been done to us. Only worse because "fatigue" describes pretty much every disease and many relatively healthy people as well. Something that describes nearly everything, describes nothing.

Everyone who has a diagnosis of CFS is oppressed whether or not they have ME.