Diagnosing ME/CFS in Children: A Parent’s Perspective

A couple of months ago, Dr. Bell and I were sitting on his back deck talking about children and CFS, and the impact of the CFS diagnosis on their emotional and physical well being. I have always held strong to the fact that the diagnosis is critical in the child’s ability to cope with the hardships of the illness itself. Dr. Bell raised several other points for my consideration and suggested I write this up for all to ponder.

My son’s road to diagnosis was pretty typical. He saw the “somewhat standard” 10 medical professionals who all questioned us, pondered possible diagnoses and sent him on to the next specialist who would probably have an answer. It ended in a tiny examining room of an esteemed Infectious Disease doctor at a prestigious teaching Children’s Hospital when the doctor told him to get on with his life.

He spoke to our scared 10-year-old son alone in the room without our presence and told him he knew there was nothing wrong with him. But he offered us the comforting words on departure that if it was CFS, which he had never really seen, then ALL kids were better within 4 years.

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