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Palo Alto Family Battles With Son's Mysterious Chronic Fatigue Syndrome

PALO ALTO (KPIX 5) -- A world-famous Stanford scientist is working to unravel a mysterious disease that is hard to diagnose and even harder to treat. The patient: his son.

"This disease is probably the very last medical disease that we know nothing about," said Ron Davis, who heads up the Stanford Genome Technology Center.

Hidden from view is Davis' 32-year-old son Whitney Dafoe.

Only his parents - Ron and Janet Dafoe - can enter his room.

"He's so fragile right now," said Janet.

"Because of his disease, he cannot tolerate strangers into his room. It causes him too much stress then that makes him worse," said Ron.

"It's a drastic change from what he used to be like," said Ashley Davis, who is Whitney's sister.

Whitney used to be an award-winning photographer who traveled the world, He built a convent in India, even worked for the Obama campaign.

But it is shocking to see Whitney today.

He is completely bedridden, unable to speak, and fed thru an IV.

"Whitney's life is like being in solitary confinement in a prison." explained Janet.

Whitney went to many doctors and underwent countless tests after he fell ill. He felt exhausted, woke up after a night of sleep feeling exhausted, and had trouble sleeping. This went on for years.

Finally, he was diagnosed with Chronic Fatigue Syndrome. Remarkably little is known about what causes it or how to treat it.

The Institute of Medicine reported (.pdf) that less than one third of medical school curricula and less than half of medical textbooks include information about chronic fatigue; and states how many health care providers either misunderstand the disorder or lack knowledge in how to diagnose and treat it.

Dr. Andy Kogelnik is with the Open Medicine Institute, and one of the few specialists who treat Chronic Fatigue Syndrome patients.

"I think it hasn't been taken seriously as a disease, even though the CDC estimates it effects more than four million Americans," said Dr. Kogelnick.

Many patients struggle for symptoms for years before receiving a proper diagnosis. Often, doctors mistake the disorder for a mental health condition, or dismiss it outright as a figment of the patient's imagination.

That frustrates Whitney's family. HIs mother is a prominent child psychologist and says she can't believe some doctors remain uninformed.

"It's devastating because the doctors are the ones who are supposed to help you," explained Janet.

"I become very furious when I hear people tell me it's all in his head and that he just needs psychiatric help." remarked Ashley.

The Institute of Medicine's report, which was released in February 2015, is clear: Chronic Fatigue Syndrome is real, complex, and debilitating.

The disease is characterized in part by profound fatigue, difficulty thinking, and an unrefreshing sleep.

The symptoms worsen with any exertion.

Davis, one of the world's leading biomedical scientists, is determined to unravel its mysteries.

A substantial number of major genetic advances can be traced back to Davis' remarkable intellect. Now the biochemist, geneticist, and inventor has turned his attention to Chronic Fatigue Syndrome.

He's asking some famous colleagues to pitch in.

"I've gotten three Nobel laureates that said 'Absolutely sure I'll help,'" Ron said.

"He's an amazing scientist," said Janet.

"I think my dad is their best hope at finding a cure and a treatment and figuring out what's going on," said Ashley.

25% of patients with Chronic Fatigue are severely ill, and either bedbound or home-bound like Whitney.

Ron and his team, including Dr. Kogelnik, are studying a small group of them, looking for clues in their blood and other fluids and bodily samples.

The hope: that if they can find a biomarker, they may be able to jumpstart a diagnostic test, more precise treatment, even a cure.

And, while there's ample brainpower, there's little money to fund the research.  While the National Institutes of Health recently announced it would ramp up efforts to unravel the mysteries of this disease, which might not equate to enough funding.

The family is holding fundraisers and directing those who want to help to a special website.

They pray their efforts won't come too late for Whitney.

"I just hope he survives this. He's about as bad as anybody has ever been with this disease and I just hope we can pull him through," Ron said.


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