ME/CFS Alert, Episode 135
Автор: ME/CFS Alert
Загружено: 2023-05-28
Просмотров: 549
In this episode, Llewellyn King interviews Lynn Fuentes, a well-known ME/CFS advocate and the mother of a son afflicted with the disease for decades.
Lynn, a lawyer by training, argues how ME/CFS patients are following a life path as important as a CEO. “It’s a full-time job, where you have to solve challenge after challenge,” she said.
Her book, “The Koan of Chronic Illness: An Integral Approach,” is really a textbook for her longtime teaching about “integrated theory and chronic disease” — teaching primarily directed at patients. But a message for everyone is that there shouldn’t be “silos of understanding about illness, but few look at it all.”
Lynn spoke about her son’s isolation. He couldn’t attend school after 15 years old, and is largely self-taught. But he had many interests, especially reading, which at one point in his life he couldn’t manage to do. “As a mother, you see that the world doesn’t see who they [children with ME/CFS] are,” she said.
Those not afflicted with ME/CFS should see those with it “as our teachers. They have learned about patience, and dealing with overstimulation.”
Lynn discussed some things that have helped her son cope with ME/CFS. And she says that the solid body of research on the disease is helping to increase social understanding.
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