A Stanford scientists quest to cure his son could help unravel the mystery of Covid-19 long haulers

At the height of a luminous career in genetics, Ron Davis, professor of biochemistry and genetics at Stanford University in California, switched to researching a disease that many of his colleagues had never heard of.

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Prior to that shift seven years ago, his breakthrough work had led to dozens of patents and laid the groundwork for the Human Genome Project, revolutionizing modern biology by giving scientists a complete map of all genes in the human species.

But when his son Whitney Dafoe, then in his 20s, came down with myalgic encephalomyelitis -- better known as chronic fatigue syndrome -- he was left bedbound, unable to speak, and unable to eat solid food.

After moving in with his parents 10 years ago, Dafoe, now 37, has made little progress in getting his old life back.

Davis did what he does best -- turning to science and rallying several Nobel Prize-winning colleagues in his latest quest.

This time, he means to cure ME/CFS, which affects between 836,000 and 2.5 million Americans, according to the US Centers for Disease Control and Prevention.

The agency estimates the disease affects 17 and 24 million people worldwide.

Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say

Prior to that shift seven years ago, his breakthrough work had led to dozens of patents and laid the groundwork for the Human Genome Project, revolutionizing modern biology by giving scientists a complete map of all genes in the human species.

Its symptoms include brain fog, muscle pain and what's called post-exertional malaise, in which simple acts like taking a shower leave someone bedbound for days.

Davis shares his journey in his new book, "The Puzzle Solver," co-written with journalist Tracie White and released in January.

During the global pandemic, Davis' search for a cure for ME/CFS could also shed new light in understanding why some Covid-19 long haulers have stayed sick for more than a year.

This interview has been edited for length and clarity.

Ron Davis: I had no choice. My son came down with it, and we started seeing multiple doctors. Many of them didn't know what he had, and it took several years for him to get diagnosed. Those doctors were not very optimistic about the likelihood of getting him well.

It's really hard to treat these patients, since doctors don't have any research to base anything on. Doctors really just have their own experience and trial and error trying to help them. I felt we have to understand this better. There's a lot wrong with people who have this disease.

During the global pandemic, Davis' search for a cure for ME/CFS could also shed new light in understanding why some Covid-19 long haulers have stayed sick for more than a year.

If there were great scientists and a lot of money doing it, I probably wouldn't have changed fields. But when I looked into how much money is spent (The National Institutes of Health awarded $15 million in ME/CFS research grants in 2019), and how many researchers there are, it was appalling. There's almost no money spent on it, and very few serious researchers had worked on it.

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