In the USA, the offical name for my disability is CFS, Chronic Fatigue Syndrome. Everyone even tangentially connected to this illness knows the name is ludicrous. This name has done us vast material harm in layperson comprehension, medical acknowledgment, research interest, research funding, and patient care -- all because the name sounds like "Hey man, I'm tired." People hear the name and think we're not really SICK. I promise you, we are. We are sick as a dog. I can't tell you how many people over the years have said to me, "I'm tired too!" So, patients (myself included) and advocates often use the acronym CFIDS, for Chronic Fatigue Immune Dysfunction Syndrome. We don't know whether immune dysfunction is the heart of our illness (it's one of many theories), yet many of us prefer this possible red herring that sounds slightly more medical over the "Hey man I'm tired" label.
We don't know medically what the core physiological problem is. What causes CFIDS? What are its biological mechanisms? Don't we deserve the research to figure that out and some respect in the meantime? CFIDS could even possibly turn out to be more than one illness. Yet we desperately need a better name, even before understanding it medically. I propose keeping the official acronym and changing the name to Chronic Flu Syndrome. It doesn't claim to know any more than we know, and it's a dense nugget of description of what our lives are like.