Tag Archives: occupy

Will FDA Step Up?

Posted on September 13, 2012 by Jennie Spotila

The Federal Drug Administration held a conference call today to speak with CFS patients, advocacy groups and other interested parties. This is the first time in the history of this disease that FDA has communicated with the patient community in … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 25 Comments

Testimony Tips

Posted on September 11, 2012 by Jennie Spotila

The CFS Advisory Committee meeting is less than a month away (October 3 and 4), and sign ups for public comment opened last night. At every CFSAC meeting, the public is given the opportunity to offer comments, but you have … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 4 Comments

Imperfect

Posted on September 7, 2012 by Jennie Spotila

I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , | 11 Comments

Adapting

Posted on August 31, 2012 by Jennie Spotila

I remember my mother and grandmother canning every year. My grandmother would put up jars of peach halves and applesauce, and my mother made strawberry jam. It always seemed like a silly waste of time to me, since you can … Continue reading →

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

Tale of Two Letters

Posted on August 22, 2012 by Jennie Spotila

Advocating for an adequate federal response to CFS usually feels like banging your head against a brick wall. Every once in awhile, you knock out a brick but it feels like so much more because you’ve been banging away for … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 4 Comments

Spontaneity

Posted on August 2, 2012 by Jennie Spotila

I’ve always been a planner, and living with CFS wreaks havoc on plans. I never know if I’ll be able to follow through on plans, big or small. I missed my cousin’s high school graduation, and at least three weddings … Continue reading →

Posted in Occupying | Tagged , , , , , , , , | 2 Comments

Can’t Drive 95

Posted on July 2, 2012 by Jennie Spotila

Almost as soon as I had decided to raise the limit on my heart rate monitor to 105 beats per minute, my physical therapy team smacked that idea down. They told me that one week with the monitor was not … Continue reading →

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

Joint Request for Action

Posted on June 22, 2012 by Jennie Spotila

I joined in this effort by advocacy groups and individuals to secure a meaningful response to CFS from the Department of Health and Human Services. This letter was sent to Secretary Sibelius and others on June 5th. The coalition of … Continue reading →

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

CFSAC Testimony of Matthew Lazell-Fairman

Posted on June 21, 2012 by Jennie Spotila

Matthew Lazell-Fairman delivered these comments to the CFS Advisory Committee at its June 14, 2012 meeting. He has kindly given me permission to publish them here. To those responsible for health policy on ME/CFS, I need you to listen and … Continue reading →

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

CFSAC Takeaways

Posted on June 18, 2012 by Jennie Spotila

I won’t attempt a comprehensive writeup of the recent CFS Advisory Committee meeting. This meeting was one of the most thoroughly covered: on Twitter (#CFSAC), real-time reports from Phoenix Rising, and a writeup by Tina Tidmore. Instead, I offer comments … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 9 Comments