What the Heck are They Talking About: Neurological CFS: A Plea for Biomedical Research for Children with CFS/ME

Sprawled on the floor, are a mother and her daughter. No more, no less. There are no analysts in the room, no doctors, no psychiatrists.

Just a mother, with her child, the way it has been for centuries.

Silent tears flow down the face of the weeping child, as they have slide down the faces of children time out of mind. The mother rubs and pats the child’s back rocking slightly making the comfort noises that parents have made time and time again throughout the world.

And like so many before them, these two love life, and the love life brings them. It surrounds them like an aura.

Although a unique individual, the child like children before her, springs from a pattern of behavior that knows not the divide of language or illness.

The child plays with friends, enjoys school and the dance lessons she has taken for the past five years. She wants to be a dance instructor when she is grown: just as all children dream of the paths to which their potential may one day lead.

She weeps with frustration and pain. She has been trying to relearn a simple gymnastic move that was like breathing to her before she became ill. A usually sunny child, this cloudburst releases hithero unacknowledged grief and sheer misery.

Like so many parents before her, the mother fights back tears of her own, knowing that there is no cure and no biomedical research being done to bring about a greater understanding of this biological disease in children, much less a cure.

The mother chokes back her own grief as she soothes, “You are young lovey, and you may outgrow this, at least the severity. Yes, it is good that you stay focused on the positive things in life, but sometimes tears are necessary too. shhhh shhh lovey, sokay, sokay, your family loves you just as you are, sokay, it’s alright to cry.”

Schooling her face into a smile the mother brings out an increasingly threadbare but well-loved family joke and says, “You know that my magic wand is broken and they won’t honor the warranty. Don’t worry, I’ll write another letter and we’ll get things fixed.”

The two laugh a little as they hold each other in a tight hug.

Eventually the parent and child part and do what others have done time immemorial, they pick up the pieces of their daily life and go forward: first one step and then another.

Two of my children have been medically diagnosed with the devastating biological disorder. They are: active, mentally healthy young people, who also love to go to school among other things.

What the Heck are They Talking About: Neurological CFS

A Plea for Biomedical Research for Children with CFS/ME

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