Why ME, or yuppie flu, is like Aids was once – misunderstood or dismissed as not real, and ignored by most doctors
Twenty million people suffer from myalgic encephalomyelitis, yet there is still no test for it, nor any approved treatment. We talk to a mother whose daughter has the illness, and who has consulted dozens of doctors in search of help
Until my friend Caroline introduced me to myalgic encephalomyelitis, or ME, I didn’t know much about it. It was yuppie flu, a sort of tired opting out of life, I thought. And until she had to acquaint herself with the illness, Caroline didn’t know much about it, either.
“What I did know was vague; I had no understanding of it,” she recalls.
Three years ago, after contracting meningitis, her daughter, Saskia, just 20 at the time, succumbed to the illness. Since then Saskia has been mostly confined to bed and Caroline, as her primary carer, has had to try to understand an illness most doctors still know little about.
ME is also known as CFS, for chronic fatigue syndrome, another name that does nothing to dispel the connotations with laziness and self-pity that its other name, yuppie flu, evoked when the first reports of the illness emerged two decades ago.
UK-based NGO the Grace Charity for ME does the best job of describing the illness by breaking the name down into simple parts to demonstrate the ghastly breadth of issues thrown up by the condition, which affects multiple organs of the body.
This is its explanation: “My-” refers to muscle; “-algic” means pain; “Encephalo” means brain; “-myel-” refers to the spinal cord; and “-itis” stands for inflammation.
