Julie Rehmeyer - ME/CFS Journalist and Advocate Wins Award for ... You'll Never Believe it

Cort

Founder of Health Rising and Phoenix Rising
Staff member
...Statistics writing! Julie is working on book on her experiences with mold and ME/CFS, and has recovered much of her health through mold avoidance.

I didn't know about her other life, though, as a specialist in statistics writing. She just won an award for that. Her statistical hero was ....drum roll....Florence Nightingale - probable ME/CFS patient....

She also talked about mold and ME/CFS at the end of the interview about receiving the award.
Some selections from the interview are below.

http://magazine.amstat.org/blog/2015/11/01/esrawinner2015/

I wrote the Math Trek column at Science News for quite a few years, and I took particular pleasure in finding statistics stories for my column. It felt like I was bringing the invisible superhero of science to light.

On a deeper level, I find it especially meaningful to write about mathematics and statistics because so many people have had wounding experiences with them in school. It gives me such enormous pleasure when someone says, “I read your article, and you know, I just don’t have a math brain and I hate math, but I think I understood your story, and it was pretty fun!”

To me, when people come to believe they’re terrible at math, they’re suffering from a wound that’s ultimately a spiritual one. They’ve been convinced that their ability to find pattern and meaning in the world is somehow fundamentally flawed.

The impacts of that kind of wound go far beyond anxiety when it comes to calculating a tip or balancing a checkbook. In a background way, often unnoticed, it saps people’s power, makes it harder for them to access their deepest selves and bring that into the world.

Do you have a hero in the discipline of statistics?

Florence Nightingale. My story about her, “The Passionate Statistician,” was one especially cited for my award. We tend to think of her as “the lady with the lamp,” saving the lives of wounded soldiers through her nursing. But she saved many more lives through her use of statistics, revealing the changes that needed to be made in nursing as a whole. She also did a huge amount of that work while fighting a serious chronic illness, and since I wrote many of my own statistics stories while dealing with a serious chronic illness, that was especially moving to me.

What have you done since you won the award?

I’m writing a book at the moment, a memoir about the science and politics of poorly understood illnesses. I was terribly ill with chronic fatigue syndrome for many years, eventually so sick that I was paralyzed much of the time, and I eventually discovered that for me, the central problem was a hypersensitivity to mold.

Science hasn’t served chronic fatigue syndrome patients well, and the experience has affected my relationship to the institutions of science quite significantly. On the surface, this is far removed from statistics, but some of the questions at its heart are quite similar: How do we make sense of the evidence our bodies give us? How do we assess uncertainty? How do we make good decisions in the face of that uncertainty?

I’m also a Scripps environmental journalism fellow at the University of Colorado, Boulder. I get to have the run of the university and take any class I please, but I have no responsibilities. Pretty sweet gig!

What are your other passions?

Recovering my health enough that I’m able to exercise again is an enormous thrill, so I’m loving biking and hiking and running and swimming. I take huge pleasure in my dog, Frances. I got married two years ago, and I still feel very much like a newlywed (and also like I can hardly remember life before him).

I built my own straw bale house on 12 acres of streamside land outside Santa Fe, New Mexico, and I feel very connected to my house and land
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