Tuesday, May 12, 2015

ME/CFS Awareness Day: Big data

"I really enjoy working on problems that others think are unsolvable."
—Ronald W. Davis

ME/CFS AwarenessAnother year, another ME/CFS Awareness Day, and we STILL don't have a cure. What's up with that?

(If you have no idea what ME/CFS is, this awareness-day post from a few years ago will catch you up.)

I've been feeling discouraged about the lack of progress toward a cure, which is a big reason you haven't seen one of these ME/CFS posts in a while. But a new organization has provided a tiny glimmer of hope:

The End ME/CFS Project.

They're doing medical research.

They'll be conducting a comprehensive big data study that includes housebound and bedbound sufferers. This is a big deal, as housebound and bedbound patients tend not to be able to travel to laboratories, which means most research leaves these patients out.

The board director, Ron W. Davis, is the director of the Stanford Genome Technology Center. His son suffers from a severe case of ME.

James Watson—one of the guys who discovered the structure of DNA—is also on the advisory board.

You can donate here.

Hopefully we'll have more good news to be aware of by next year's Awareness Day.