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.

 

I received a letter in the regular mail 2 days ago from the OMF asking for donations, and a photograph taken by Whitney, "Never Forget the Light".

 

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.

 

Good article.

Abilify I believe.

Surprised to hear that Whitney only sleeps 2 hours a day. Seems really bad.

 

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."

 

Oh dearie me.

 

I don't get your drift, but. ....as a parent it is utterly heartbreaking to watch your offspring suffer and likely continue to suffer so horrifically. If this is autoimmune and like MS what does the future auger? Best wishes Madame.

 

is that because of Abilify? Is that a side effect?

 

Good to keep in mind
https://twitter.com/user/status/1345487507505504264

 

Abilify can alter sleep but it sounds like he naturally only sleeps 2 hours per day.

 

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.

 

We could really use a big step forward.

 

They probably have a biomarker now— my guess!

Sounds optimistic.

Maybe they figured out the Abilify tolerance thing as well.

 

.

 

Love the image of them all together lying on the floor. That's such a big thing for Whitney to be photoed with his family.
(Tried to paste it into my message but didn't manage it)

 

A scientist proved chronic fatigue syndrome is real — after his son was devastated by it

https://nypost.com/2021/01/02/how-a-scientist-finally-proved-chronic-fatigue-syndrome-is-real/

 

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.