Open Medicine Foundation (OMF)

The Scientist - A Geneticist's Quest to Understand His Son's Mysterious Disease
ME/CFS is now Davis’s primary research focus. His leadership has contributed to changes in the field: ME/CFS is now accepted a biological disease, and federal funding has increased. New, talented investigators have joined the hunt for a cure. Davis is not alone in his race to find treatments for his son and millions of others like him.
 
Al Jazeera A geneticist's biggest challenge: Curing his own son

Luminaries from all over the world have joined Davis’s research and flew in for the last pre-pandemic CFS Symposium at Stanford in September 2019: Robert Phair, a former Johns Hopkins School of Medicine professor, has seen interrupted metabolism in patients; top surgeon Ron Tompkins established a CFS research collaboration at Harvard University; Maureen Hanson, professor of molecular biology at Cornell University who was motivated to join the efforts by a family member with CFS, has focused her research on the microbiome of patients’ gut and blood; neuroscientist Jonas Bergquist who travelled from Uppsala University, in Sweden, where he started a research centre on ME/CFS.

Stanford geneticist Mike Snyder summed up what many of them think: “When Ron calls, we come.” They all acknowledge his brilliant mind and work ethic, and complain about the lack of funding to study this complex disease.
 
When Davis returns from feeding his son, his face is crumpled by exhaustion. “I’ve got to sit down,” he says. Both father and son have Ehlers-Danlos syndrome, which causes joint pain and fatigue. Davis started suffering from rheumatic fever as a one-year-old toddler, was often bedridden for weeks as a child; he lives with chronic pain every day. “I’m used to pain,” he says flatly. “You just rewire your brain to ignore it.”
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Interesting.
 
Thanks for the article. It was very good. And Janet spoke very well for the article!

I found the following interesting and very unsettling: "... but Davis is convinced he’s confronting an autoimmune disorder, not unlike MS."
 
Kalliope said:
Al Jazeera A geneticist's biggest challenge: Curing his own son

Luminaries from all over the world have joined Davis’s research and flew in for the last pre-pandemic CFS Symposium at Stanford in September 2019: Robert Phair, a former Johns Hopkins School of Medicine professor, has seen interrupted metabolism in patients; top surgeon Ron Tompkins established a CFS research collaboration at Harvard University; Maureen Hanson, professor of molecular biology at Cornell University who was motivated to join the efforts by a family member with CFS, has focused her research on the microbiome of patients’ gut and blood; neuroscientist Jonas Bergquist who travelled from Uppsala University, in Sweden, where he started a research centre on ME/CFS.

Stanford geneticist Mike Snyder summed up what many of them think: “When Ron calls, we come.” They all acknowledge his brilliant mind and work ethic, and complain about the lack of funding to study this complex disease.
Click to expand...
Good to keep in mind
 
Re the bit about sleep, they were talking about day-night reversal, so I read it as saying that he only sleeps 2 hours at night, and sleeps the rest during the day.
 
How did RD "prove" CFS is real?

This:
"Davis had discovered that the processes in each cell that convert food to energy were not working correctly in his son. The scientists had “found scientific proof of ME/CFS,” clearing a major hurdle for a disease that many still today deem imaginary".

I'm at a loss for words. A consultation with a biochemist told me this in 2001 after I had a panel of tests done.
 
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