Tag Archives: post-exertional malaise

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

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 →

Posted in Advocacy | Tagged , , , , , , , , , , | 2 Comments

Comparing Exercise Advice

Posted on January 18, 2013 by Jennie Spotila

Exercise is an issue for every CFS patient, and there is no shortage of advice on whether and how to do it. On January 14th, the CDC hosted a conference call as part of its Patient Centered Outreach and Communication … Continue reading →

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

Best Laid Plans

Posted on January 15, 2013 by Jennie Spotila

This is not the day I planned to come back from my holiday hiatus, nor is this the post I planned for the beginning of a new year. But as they say: “The best laid plans of mice and men … Continue reading →

Posted in Occupying | Tagged , , , , , , , | 9 Comments

Speeding Things Up

Posted on December 10, 2012 by Jennie Spotila

In my previous post, I explained the definitions FDA used to determine that CFS is a serious or life-threatening condition. But the true significance of FDA’s decision is that it makes CFS treatments eligible for programs that speed up the … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , | 1 Comment

Insufficient Data

Posted on December 4, 2012 by Jennie Spotila

One of the most frustrating aspects of coping with CFS is the lack of definitive data. A PubMed search for “chronic fatigue syndrome” yields 4,877 results (as of today), but as a patient on the front lines I have to … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , | 21 Comments

Rest Medicine

Posted on November 28, 2012 by Jennie Spotila

I have been working really hard at resting. That probably doesn’t make sense, but I have been struggling to incorporate preemptive rest into my routine and it feels like a lot of work. The rationale for preemptive rest is that … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , | 6 Comments

Hurricane Drunk

Posted on November 6, 2012 by Jennie Spotila

No walls can keep me protected No sleep, nothing in between me and the rain And you can’t save me now I’m in the grip of a hurricane I’m gonna blow myself away (Florence + the Machine)   Hurricane Sandy … Continue reading →

Posted in Occupying | Tagged , , , , , , | 3 Comments