Ben’s Story

Many people are not aware that ME/CFS can affect young children and teenagers.

Ben was an active 18-year-old who had lots of friends, played sports and got good grades. He realized something was up when he couldn’t keep up with his friends anymore. He would go out with them for an hour, then he’d go home and crash and be in bed for days.  It got worse. The full reality of Chronic Fatigue Syndrome was setting in.

“You can’t judge it by the name. The name is so misleading”, says Ben. “It’s not just about being tired. Tired doesn’t even come close to describing it.” His dad explains that “It’s way more than tired. It’s complete exhaustion. But when you talk to him, he sounds fine”.

And that is part of the problem because, to his doctors, Ben looked and sounded fine. They told him he was depressed and that he should take more vitamins and get more exercise. Exercise only made things worse. Much worse. At 22, Ben is now bedridden and tired of being ignored by the medical community.

This story shows, once again, how doctors and clinicians need to be better educated about ME/CFS.

Ben follows his friends on Facebook and sees how they are going through school and having fun, wishing he too was moving on with his life.

Watch news report on Ben here

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