Author Archives: Jennie Spotila

I Thank You

Posted on May 2, 2013 by Jennie Spotila

When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , | 5 Comments

Moving On Up

Posted on May 1, 2013 by Jennie Spotila

For years, the Pacific Fatigue Lab at the University of the Pacific has done the best research on exercise and ME/CFS. Staci Stevens, Dr. Chris Snell, and their collaborators perfected the use of two-day cardio-pulmonary exercise testing (CPET) in people … Continue reading →

Posted in Occupying, Research | Tagged , , , , , , , , | 1 Comment

What a Crash Looks Like

Posted on April 29, 2013 by Jennie Spotila

On the suggestion of my friend Claudia, I recorded a video of myself on the third day after the FDA Drug Development Workshop on ME and CFS. I had to swallow my pride to do this. Even some members of … Continue reading →

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

Start as You Mean to Go On

Posted on April 25, 2013 by Jennie Spotila

I’m not sure which way to describe the ME/CFS community reaction to the announcement that Kim McCleary will be leaving the CFIDS Association: that people were so stunned you could hear a pin drop or that the news was the … Continue reading →

Posted in Commentary | Tagged , , , , , | 11 Comments

FDA Meeting Materials

Posted on April 22, 2013 by Jennie Spotila

The FDA Drug Development Workshop for ME and CFS is finally here!!! I will be speaking on a panel at the meeting on Friday, and am in frantic preparation mode. I’ve gathered the pertinent materials together in one post to … Continue reading →

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Vincent Departs

Posted on April 19, 2013 by Jennie Spotila

Eagle-eyed Tom Kindlon posted on Twitter last night that Dr. Ann Vincent’s name has been removed from the CFS Advisory Committee roster. It appears that Dr. Vincent has resigned, although I have no information on when or why she may … Continue reading →

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I Heard the News Today, Oh Boy

Posted on April 16, 2013 by Jennie Spotila

What is there to say about something like the Boston Marathon bombing? There is no sane way to reconcile the gruesome images, the suffering and destruction with our need to believe that we are safe. We are privileged enough in … Continue reading →

Posted in Commentary | Tagged , , , , | 11 Comments

Ring Theory

Posted on April 13, 2013 by Jennie Spotila

We’ve all had the experience of someone saying the wrong thing to us about our disease. “I hate that you always cancel at the last minute.” “You rest all day. Can’t you make dinner once in awhile?” “Work is killing … Continue reading →

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Learning About FDA

Posted on April 11, 2013 by Jennie Spotila

FDA’s decision making process is complex, to say the least. But the more we can learn about the process and how FDA fulfills its mission, the better equipped we will be to participate meaningfully in the upcoming Drug Development Workshop … Continue reading →

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Down to the Wire

Posted on April 7, 2013 by Jennie Spotila

Tomorrow is the big deadline to register for the FDA meeting on Drug Development for ME/CFS. I’m recapping the deadlines and also providing a little more information on how participation will work: If you want to attend the meeting in … Continue reading →

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