Author Archives: Jennie Spotila

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

FDA Webinar on Advocacy

Posted on November 16, 2012 by Jennie Spotila

Yesterday, the FDA hosted a webinar for the ME/CFS community on “Working Together for Change.” Their stated goal was to show what has been successful for patient groups in the past in working with FDA and other entities. The slides … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , | 12 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 →

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CFSAC Testimony of Dr. Joan Grobstein

Posted on November 8, 2012 by Jennie Spotila

Dr. Joan Grobstein delivered these comments to the CFS Advisory Committee at its October 3-4, 2012 meeting. She has kindly given me permission to publish them here. Hello.  I’m Dr. Joan Grobstein.  I’m a physician. My topic is responsibility. Recently … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , | 4 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 →

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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

Patient Focused Drug Development

Posted on October 25, 2012 by Jennie Spotila

The FDA hosted a public meeting this morning to discuss the Patient Focused Drug Development (PFDD) initiative. The meeting was available via webcast, and a transcript will be published on the FDA website. CFS is on the list of candidate … Continue reading →

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

Mary Dimmock’s Comments to the FDA

Posted on October 25, 2012 by Jennie Spotila

Mary Dimmock presented a shortened version of these comments at the FDA meeting today on the Patient Focused Drug Development initiative. She has kindly given me permission to post her comments in full here. My name is Mary Dimmock and … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 3 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

This. Is. Why.

Posted on October 17, 2012 by Jennie Spotila

I’m on the verge of tearing my hair out, and I suspect I’m not the only one. The American Academy of Family Physicians published a review article about CFS (paywall) on Monday, accompanied by a patient information sheet. From the … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 30 Comments