Just Call It Albert ~ On the difficulty of renaming an unsexy and underfunded chronic illness

Friday 13 March 2015

I developed chronic fatigue syndrome when I was 29 after a bout of glandular fever.  Fifteen years later I'm still dealing.  I really loathe that stupid name, chronic fatigue syndrome.  Sure, fatigue is a large and scary component, but it’s nowhere near the only one.

A panel of CFS experts from the Institute of Medicine proposed a new name for CFS in February - Systemic Exertion Intolerance Disease.  Which is none too soon, given that a cruddy name like Chronic Fatigue Syndrome doesn’t particularly assist people in having their illness believed, by doctors and others' and especially not in a world that is itself exhausted.  I helped run a booth in a shopping centre several years ago just before CFS Awareness Day.  A woman breezed up in a flood of perfume that smashed itself into my nasal cavity and made me feel dizzy.  After hearing our explanation for the booth's existence she breezed, "Oh! I might have that. I'm soooooo tired all the time'" before flouncing off for a bout of pleasure shopping.  Now, no new name is going to puncture that sort of breezy self-absorption, but in a world full of people whose adrenal glands are taxed and pushed, a differential between garden variety 21st century tiredness and CFS is beyond overdue.

So I welcome the idea.  It’s just that systemic exertion intolerance disease is not quite working for me.  I mean, it's a start, but it's certainly not a stop.  At least it gives the impression that it's not just about feeling really tired.  It impresses that it's bodywide.  It even maybe gives a bit of a hint that for those CFSers who are well enough to not be bedbound, there is a variation in the amount of energy your body is granting you today which is often predicated on whether you've overdone it yesterday or the day before.  Which means that the person you're hanging with over an extended cafe sesh today, and who looks really well and seems rather together, may well be the one paying for it tomorrow or the day after by spending most of it on the couch.

The problem with finding a new name is there's not an umbrella big enough under which to fit the wide variety of symptoms that come with CFS.  It is truly systemwide, and its flow-on effects mess with your endocrine system, your digestive system, your central nervous system, your organs.  They range from bedbound people requiring care to athletes who are able to still compete as long as they monitor themselves the rest of the time.

And perhaps we shouldn't even try to find a new name for CFS unless it’s marketing-savvy.  I loathe the mere existence of marketing departments, but nevertheless, if we want greater recognition of our illness – which translates into more funding for research to find its cause – perhaps we need to sex this bugger up.  Systemic exertion intolerance disease is about as raunchy as Fifty Shades of Gray.  Plus it’s really boring.  About as boring as calling a newly-discovered star EPIC 201367065.

So I propose instead we call it Albert. Or Glimpf.  Or Smuggleglupp.  Easy to remember (after a fashion).  Much easier for the marketing department to invent a readily-remembered little logo dude to raise awareness around.  Smuggleglupp would be like a cute purple blob, smiling weakly from her spread-out morass on the floor.  Albert would be frizzy-haired, for reasons best known to my odd imagination.  I kind of like the idea of personalising something that has wreaked havoc on millions of bodies ~ makes it somehow more palatable, workable, in a way that systemic exertion intolerance disease probably never will.  That thing is better than CFS but it still smells like it was invented by a committee.  And how do you pronounce its acronym, SEID?  Is it SAYED?  SEED?  I personally reckon if it makes it through the goals as the new CFS name we go with the latter.  I’ve got just the logo for it – a flaccid, flabby sperm lying on the floor of the fallopian tube.  Too stuffed to swim anymore towards the fuzzy-edged egg screaming all wired 20 metres away.  That’s as good a place as any to define a disease that rides us right down to our cells.

Albert has a better ring, though.

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