Thursday, May 10, 2012

Toni Bernhard on ME/CFS

If Chronic Fatigue Syndrome is, indeed, several discrete illnesses, until they are isolated from each other and studied individually, little progress will be made in finding effective treatments or cures.


Because those of us with a CFS diagnosis are lumped into one group, when we read about CFS-diagnosed person being cured by a treatment, we rush out and spend hundreds, sometimes thousands of dollars on it, only to be terribly let down and possibly further harmed. Since writing How to Be Sick, I’ve lost count of the number of cures that well-intentioned people have suggested to me. But there’s no reason to believe that these cures would be effective for my particular constellation of symptoms.

If Chronic Fatigue Syndrome is several discrete illnesses, it makes sense that some people will be helped by a particular treatment, while others will not. It’s finally dawned on me that it doesn’t make sense to spend money on a treatment just because it helped or cured another person, when the two of us are unlikely to even have the same illness.

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