Wednesday, May 14, 2008

A Call for Proper Terminology

DebO writes:

We need, in every way possible, to stop researchers, press, etc. from
using the word "fatigue" on its own to describe the ailments
of  Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrom (CFS).
To be accurate it should be part of a description that includes
symptoms I and other suffer, such as extreme weakness (too weak to
sit up, too weak to read, even too weak to watch TV), debilitation,
incapacitation, disabled, totally spent, exhausted and exhaustion,
pooped out, wilting, flagging quickly, collapse, My favorites for
widespread description of ME/CFS are "totally debilitated," "extreme
weakness," and "constant exhaustion." The point is to get away from
this wimpy, undescriptive and often inaccurate word "fatigue," which
makes people believe, as many have said to me "oh, I thought you were
just a little tired."

My Webster's dictionary gives the commonly understood definition of
fatigue: "loss of power resulting from continuous work but removable
by rest." Obviously the last clause makes "fatigue" a misnomer for
those of us suffering from ME/CFS.

Language is important. Language is what shapes the world. People
can't take us seriously if they think our only problem is the feeling
they normally suffer after a long day's work or three mile run. They
recover. We  don't.

By the way, since the name ME is scarcely known in the US, I have
vowed to tell people I have Chronic Epstein-Barr. It's technically
true and at least I don't sound silly and self-indulgent.

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