Friday, June 3, 2011

"I really don't have a clue what it's like to experience such a devastating condition"

By Deborah Kotz, Globe Staff

In today's Globe, I wrote about the anger and disappointment that many chronic fatigue syndrome sufferers felt upon hearing the news that their condition probably wasn't caused by the virus XMRV. After interviewing patients about their symptoms, I realized that I really don't have a clue what it's like to experience such a devastating condition.

Sure, I'd read about best-selling author Laura Hillenbrand's battles with her illness -- how she's spent years housebound.

But it wasn't until watching the video above that the point was driven home. Chronic fatigue is about so much more than just being tired and low energy all the time.

The video features Tufts University graduate Laurel Bertrand, who sent me a polite but firm letter this morning criticizing my use of the words "chronic fatigue" to describe a condition that has left her bedridden for a decade. "I cannot stand, speak, talk, walk, bathe, or care for myself," she wrote. "Fatigue is the least of my problems."

(Yet she somehow manages to write this popular blog.)

Bertrand points out that the original name of chronic fatigue syndrome was myalgic encephalomyelitis, which implies an inflammatory state caused by an overcharged immune system. That sounds a heck of a lot more legitimate than the "trivial name" -- Betrand's words -- the condition now has.

In fact, many sufferers call their condition ME/CFS, using abbreviations of the two names. I've also seen it called post-viral fatigue syndrome since often a viral infection like mononucleosis precedes the onset of the chronic symptoms.

I'd like to know what you think?

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