Author Archives: Jennie Spotila

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

Stick a Fork In It

Posted on September 18, 2012 by Jennie Spotila

After three years of controversy about the purported association between CFS and XMRV, and after two years of waiting for the definitive Lipkin study to be finished (full text of the paper is here), we have our answer. Stick a … Continue reading →

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

The News on XMRV

Posted on September 18, 2012 by Jennie Spotila

I am going to refrain from any comment on the XMRV study results announced today until I have had a chance to read the paper, listen to the press conference, and think about the whole thing for a few hours. … Continue reading →

Posted in Research | Tagged , , , , , , , , , | 3 Comments

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 →

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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 →

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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 →

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