Category Archives: Occupying

Resist. Persist.

Posted on February 21, 2017 by Jennie Spotila

Am I the only person who feels like she is in a leaky boat, surrounded by sharks? Pretty much every time I look at Facebook, Twitter or the news, I find another leak in the boat. And when I look … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , | 19 Comments

Another Reason to Stay

Posted on January 11, 2017 by Jennie Spotila

My Mom played the cello every day, even while enduring chemotherapy. Her last lesson was less than two months before she died. Mom loved the cello, but I never really understood her dedication. Even when I took piano lessons as … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , , | 31 Comments

The Wall of Nope

Posted on December 7, 2016 by Jennie Spotila

I have reached a new low in life with ME. I call it: The Wall of Nope. The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things. Here’s an example: I’m … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , | 44 Comments

The Government Attitude Needed

Posted on November 22, 2016 by Jennie Spotila

Government/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can … Continue reading →

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Enough Is Enough

Posted on November 4, 2016 by Jennie Spotila

After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion … Continue reading →

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , | 40 Comments

An Open Letter to Dr. Koroshetz

Posted on November 3, 2016 by Jennie Spotila

The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke. A plea for sanity, respect and science Dr. Koroshetz, I write to you tonight to personally … Continue reading →

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , | 52 Comments

Still #MillionsMissing

Posted on September 27, 2016 by Jennie Spotila

Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things. One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , | 14 Comments

Pretty Much the Worst

Posted on September 9, 2016 by Jennie Spotila

One of the worst things someone said to me recently about my disability was: With all the stuff you’re doing, you work just as hard as someone working full time. The charitable and loving way to interpret this statement is: … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , | 42 Comments

DIY Brain Rehab

Posted on July 28, 2016 by Jennie Spotila

Cognitive difficulties are part and parcel of ME/CFS. Brain fog, memory problems, difficulty with focus and attention, and reduced processing speed are just a few of the deficits we deal with every day. And cognitive effort can cause post-exertional malaise … Continue reading →

Posted in Occupying | Tagged , , , , , , , | 40 Comments

Naming

Posted on July 22, 2016 by Jennie Spotila

Do you notice anything different at the top of the page? Occupy CFS is now Occupy M.E. I thought long and hard about the change, and would like to share my reasoning. First of all, CFS is a crappy name. … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , | 26 Comments