Tag Archives: DHHS

Requesting an Investigation

Posted on June 18, 2013 by Jennie Spotila

You may recall that at the May 23, 2013 CFS Advisory Committee, voting members Eileen Holderman and Dr. Mary Ann Fletcher stated on the record that they had been intimidated for expressing their views. With assistance from two fellow advocates, … Continue reading →

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No Facts for YOU!

Posted on June 6, 2013 by Jennie Spotila

The NIH funding argument is a broken record: Advocates and researchers say, “We want more funding!” NIH replies, “We need more applications!” And advocates and researchers reply, “Your review panel is made up of dentists!” Back and forth. Back and … Continue reading →

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

Perplexed

Posted on June 3, 2013 by Jennie Spotila

The good news, I guess, is that we survived another CFS Advisory Committee meeting. The bad news is that much of what happened made no sense to me. Some excellent summaries of the meeting are available, including this very detailed … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , | 24 Comments

Fireworks

Posted on May 26, 2013 by Jennie Spotila

I will be posting a summary of what we learned (or didn’t learn) at last week’s CFS Advisory Committee meeting, but one incident requires detailed examination. Towards the end of the second day, conflict erupted between several committee members, allegations … Continue reading →

Posted in Advocacy | Tagged , , , , , | 21 Comments

CFSAC Testimony from Amy Squires

Posted on May 22, 2013 by Jennie Spotila

Amy Squires is my dear friend, and serves as Chairman of the Board of Directors of the CFIDS Association. She has given me permission to post the comments she made to the CFS Advisory Committee today. My name is Amy … Continue reading →

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CFSAC Testimony May 2013

Posted on May 22, 2013 by Jennie Spotila

I submitted two versions of testimony to the May 22-23, 2013 CFS Advisory Committee meeting. My written testimony can be viewed here.  What follows is the testimony I delivered by telephone this morning: My name is Jennifer Spotila, and I … Continue reading →

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What To Look For

Posted on May 20, 2013 by Jennie Spotila

The CFS Advisory Committee will meet on Wednesday and Thursday this week (May 22nd and 23rd). The meeting will be webcast, and I’ll update with that information as soon as it becomes available. UPDATED: To call in to the CFSAC … Continue reading →

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Why and How to CFSAC

Posted on May 9, 2013 by Jennie Spotila

I wrote an article for Phoenix Rising about a few things we can expect at the upcoming CFS Advisory Committee meeting on May 22-23rd. Today I want to focus on why you should participate, and how to do so. This … Continue reading →

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Full Text CFSAC Recommendations

Posted on May 7, 2013 by Jennie Spotila

As I’ve reviewed elsewhere in great detail, the CFS Advisory Committee will be discussing which recommendations should be designated “high priority” at their meeting on May 22-23rd. We now have the opportunity to voice our own views about which recommendations … Continue reading →

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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 →

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