Author Archives: Jennie Spotila

FDA Meeting Materials

Posted on April 22, 2013 by Jennie Spotila

The FDA Drug Development Workshop for ME and CFS is finally here!!! I will be speaking on a panel at the meeting on Friday, and am in frantic preparation mode. I’ve gathered the pertinent materials together in one post to … Continue reading →

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

Vincent Departs

Posted on April 19, 2013 by Jennie Spotila

Eagle-eyed Tom Kindlon posted on Twitter last night that Dr. Ann Vincent’s name has been removed from the CFS Advisory Committee roster. It appears that Dr. Vincent has resigned, although I have no information on when or why she may … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 14 Comments

I Heard the News Today, Oh Boy

Posted on April 16, 2013 by Jennie Spotila

What is there to say about something like the Boston Marathon bombing? There is no sane way to reconcile the gruesome images, the suffering and destruction with our need to believe that we are safe. We are privileged enough in … Continue reading →

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

Ring Theory

Posted on April 13, 2013 by Jennie Spotila

We’ve all had the experience of someone saying the wrong thing to us about our disease. “I hate that you always cancel at the last minute.” “You rest all day. Can’t you make dinner once in awhile?” “Work is killing … Continue reading →

Posted in Occupying | Tagged , , , , , | Comments Off on Ring Theory

Learning About FDA

Posted on April 11, 2013 by Jennie Spotila

FDA’s decision making process is complex, to say the least. But the more we can learn about the process and how FDA fulfills its mission, the better equipped we will be to participate meaningfully in the upcoming Drug Development Workshop … Continue reading →

Posted in Advocacy | Tagged , , , , , , | Comments Off on Learning About FDA

Down to the Wire

Posted on April 7, 2013 by Jennie Spotila

Tomorrow is the big deadline to register for the FDA meeting on Drug Development for ME/CFS. I’m recapping the deadlines and also providing a little more information on how participation will work: If you want to attend the meeting in … Continue reading →

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

In Which I Rant at NPR

Posted on April 4, 2013 by Jennie Spotila

Two weeks ago, NPR published a story about the rise in Social Security disability claims. The bottom line of the story is that unemployed people are choosing to go on SSDI because they have conditions that prevent them from doing … Continue reading →

Posted in Commentary | Tagged , , , , , , | 3 Comments

FDA Deadlines

Posted on April 3, 2013 by Jennie Spotila

Deadlines are coming fast and furious as we enter the home stretch before the FDA meeting on Drug Development for ME/CFS. Here are the key dates: APRIL 8TH: Deadline to register to attend the meeting in person – even if … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | Comments Off on FDA Deadlines

What FDA Wants

Posted on April 2, 2013 by Jennie Spotila

I think it’s clear what ME/CFS patients want to come out of the FDA’s Drug Development Workshop for CFS and ME. We want short, straight lines through the drug development landscape to FDA-approved treatments for our disease. But what does … Continue reading →

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

AAFP Follow Up

Posted on April 1, 2013 by Jennie Spotila

After the American Academy of Family Practitioners published an article on CFS in October 2012, Dr. Lucinda Bateman and I submitted a Letter to the Editor. Today, that letter was published and the full version is free online. There is … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 1 Comment