Everything Can Change in a Moment
A visit with one of the greatest geniuses who is trying to find a cure for chronic fatigue
“Everything can change in a moment. You never know what will happen in the future. Never stop fighting. I’m fighting with you. If you feel like giving up, give it to me. I will carry it for you.”
These are the words Whitney Dafoe typed when his mother Janet Dafoe asked him if he had advice for fellow patients. Whitney was diagnosed in 2010 with myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), a complex illness that leads to debilitating exhaustion, brain fog, insomnia, and neurocognitive impairments. He has been mostly bedridden for the last 10 years and has not spoken a word since Christmas 2014. He only communicates via pantomime or by typing short messages into his tablet. In one of his texts several years ago, Whitney typed, “Chronic fatigue sounds too banal. I call it total body shutdown.”
Whitney Dafoe in the Himalayas before he got ill. (Photo courtesy Ashley Haugen)
If you’ve read Bouncing Forward, you know that I’ve been struggling with chronic fatigue and was bedridden for eight months in the 90s. I find Whitney Dafoe’s resilience extremely inspiring. Before the pandemic, I had a chance to visit his family in Palo Alto. It was very encouraging to speak with his father, Ron Davis, one of the most renowned geneticists in the world, about his search for a cure. The research of ME/CFS is increasingly relevant now since infectious disease specialists such as Dr. Anthony Fauci warn that COVID-19 can lead to chronic fatigue.
The National Academy of Sciences estimates that up to 2.5 million Americans suffer from ME/CFS, and an estimated 84 to 91 percent of people with ME/CFS are not diagnosed. Davis, the director of the Stanford Genome Technology Center, has solved complex puzzles before. “CFS is probably the last major illness we need to figure out,” says Davis. “I feel the tremendous weight to find a solution.”
Read the full story on Aljazeera here.
My visit with Whitney Dafoe’s family was a much needed reminder that everything can indeed change in a moment. May 2021 bring many changes for the best. The days are getting brighter.
Next month, I will be speaking with Dr. Terry Wahls who went from bedridden with MS to playing soccer and riding her bike again.
I am hopeful that 2021 will bring us new medical revelations, less Covid and more hugs, less anxiety and more resilience.
Wishing you a 2021 filled with joy and growth,
Michaela
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