Tag Archives: occupy

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

Gratitude

Posted on November 20, 2012 by Jennie Spotila

We celebrate Thanksgiving in the United States on Thursday, and you may have seen the 30 days of gratitude meme on social media this month. I decided to share my gratitude in one post, and focus on aspects of my … Continue reading →

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

In Concert

Posted on November 14, 2012 by Jennie Spotila

I went to a concert on Saturday night. I know, right? Given how sick I have been, and how much I have struggled after outings, a concert sounds pretty crazy. In fact, I haven’t been to a concert in many … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , | 5 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

Puzzle Pieces

Posted on October 30, 2012 by Jennie Spotila

Let’s play a game. Imagine you have a large puzzle that makes an Impressionist picture of a colorful cottage-style garden. You can put it together as long as you have the picture on the box. First you assemble the lower … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 13 Comments

FDA Input Sought

Posted on October 20, 2012 by Jennie Spotila

As part of its commitment under the recently approved Prescription Drug User Fee Act (PDUFA V), the FDA will be conducting an initiative, called the patient-focused drug development initiative, to provide for a more systematic approach to obtain the patient’s … Continue reading →

Posted in Advocacy | Tagged , , , , , | 7 Comments

Metrics

Posted on October 3, 2012 by Jennie Spotila

I delivered the following testimony via telephone to the CFS Advisory Committee on October 3, 2012. I would like to note something that Dr. Nancy Lee said today: “Nothing about me without me.” That’s what we’re asking for. FDA is … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 6 Comments

Meeting This Week

Posted on October 1, 2012 by Jennie Spotila

UPDATE: You can watch the meeting via webcast OR you can call in to the meeting in listen-only mode at  1-866-761-7202. Passcode: 3117619.   The CFS Advisory Committee will meet on Wednesday and Thursday this week. The registration deadline for attendance … Continue reading →

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

How Did They Get Here?

Posted on September 21, 2012 by Jennie Spotila

I’ve been following the work of the CFS Advisory Committee closely, and after the latest group of new members were appointed I wondered who had nominated them. I’ve done some research, and the answer might surprise you. Just getting this … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , | 32 Comments