How to Help Your Doctor Understand ME/CFS Disability

The central aspect causing the disability of chronic fatigue syndrome (ME/CFS) is elusive. Patients say that they have fatigue, but physicians do not understand what is so bad about that. Nearly everyone has fatigue. Certainly physicians have fatigue.

Whatever it is that patients with CFS have is different; what is entirely unique is not the fatigue but the activity limitation.

When patients with CFS appear in front of a physician they look well, and this is a key to the diagnosis of the illness. When they explain that they have fatigue or are tired all the time, the physician waits for the next step because this doesn’t count. Everyone is tired. So what.

“No, you don’t understand,” the patient says. “I’m really tired.” And the physician begins to think of other things or begins a perfunctory examination to get on with it. The visit is essentially over, and the patient perceives that the physician does not believe them.

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