Author Archives: Jennie Spotila

Winning Contestants

Posted on September 17, 2012 by Jennie Spotila

Two contests, one that you may have heard of and one that you may not, are active right now with CFS related organizations in the running for cash. The Chase Community Giving contest on Facebook features two CFS organizations competing … Continue reading →

Posted in Commentary | Tagged , , , , | Comments Off on Winning Contestants

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

Preemptive Rest

Posted on August 28, 2012 by Jennie Spotila

I continue to wear my heart rate monitor every day, and generally listen to its alarm.  When it starts to sound, I sit down (although not instantaneously I will admit). And when I hit the part of the day where … Continue reading →

Posted in Occupying | Tagged , , , , , , , , | 12 Comments

Another Day, Another Letter

Posted on August 24, 2012 by Jennie Spotila

Last month, I joined six advocates in sending a letter to Assistant Secretary Howard Koh regarding the recent vacancy on the CFSAC and a proposed change to the committee charter. Yesterday, I received the response below. While there are no … Continue reading →

Posted in Advocacy | Tagged , , , , , | Comments Off on Another Day, Another Letter

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

New Life

Posted on August 15, 2012 by Jennie Spotila

I always wanted kids. When my husband and I got married, we thought three kids sounded like a good plan. Even though I got sick two months after we met, and was still sick when we married less than two … Continue reading →

Posted in Occupying | Tagged , , , , | 15 Comments

Free Turkeys

Posted on August 7, 2012 by Jennie Spotila

A keystone of successful efforts to combat complex diseases like CFS has been lacking for thirty years: strategic coordination. Other illnesses, including autism and Alzheimer’s, are now benefiting from coordinated federal strategic plans. In the last year, the Department of … Continue reading →

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