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.


Juliet said...

Thanks for posting this, Susan - and please do keep plugging away at raising awareness, we really need people without ME to keep supporting us, and I'm sure I'm not the only one to be grateful whenever you post about it! And isn't it great that someone is finally including people with severe ME in their research?!

I'm not sure people outside the US can donate to this project though, so here's a link to Invest in ME's current research projects, for anyone in the UK.

cinderkeys said...

Thanks for the link! It is great that somebody is finally studying severe sufferers, and long overdue. I really hope something comes of this.