Tag Archives: testimony

Tell It To The FDA

Posted on March 15, 2013 by Jennie Spotila

The much anticipated FDA meeting on drug development for ME/CFS on April 25-26th is fast approaching, and your participation is needed! There is a great deal of time set aside for patient input, but the process will work very differently … 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 →

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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 →

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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 →

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Another CFSAC Done Gone

Posted on October 6, 2012 by Jennie Spotila

The CFS Advisory Committee held its second meeting of the year on October 3-4, 2012. Last time, I organized my summary around the good, the bad, and the WTF moments. This time, I am organizing around the discussion themes. Overall, … Continue reading →

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Metrics

Posted on October 3, 2012 by Jennie Spotila

I delivered the following testimony via telephone to the CFS Advisory Committee on October 3, 2012. I would like to note something that Dr. Nancy Lee said today: “Nothing about me without me.” That’s what we’re asking for. FDA is … Continue reading →

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Meeting This Week

Posted on October 1, 2012 by Jennie Spotila

UPDATE: You can watch the meeting via webcast OR you can call in to the meeting in listen-only mode at  1-866-761-7202. Passcode: 3117619.   The CFS Advisory Committee will meet on Wednesday and Thursday this week. The registration deadline for attendance … Continue reading →

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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 →

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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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The Fine Print

Posted on July 5, 2012 by Jennie Spotila

Earlier this month, I told the CFS Advisory Committee to keep track and keep asking about how DHHS was responding to its recommendations. I discussed four recommendations in detail, including: Regarding your recommendation that HHS engage the expertise of the … Continue reading →

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