Tag Archives: speaking out

Swift Response

Posted on March 1, 2013 by Jennie Spotila

I am pleased to share with you the response from HHS to Public Citizen’s letter to the Acting General Counsel about the CFSAC High Priority Recommendations. Public Citizen wrote to the Acting General Counsel on my behalf on February 14th, … Continue reading →

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Coverage

Posted on February 25, 2013 by Jennie Spotila

Thank you, everyone, for your comments on my Public Citizen story. I’ve heard from you on the blog, email, Facebook and Twitter. Thanks! We are still awaiting a formal response from the Acting General Counsel of HHS. I will share … Continue reading →

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A Public Citizen

Posted on February 18, 2013 by Jennie Spotila

When I wrote about the CFS Advisory Committee’s creation of a High Priority Recommendations document and how their process violated their own charter, many people asked me “What can we do about it?” Today, I can finally tell you what … Continue reading →

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Ampligen is Not AZT

Posted on February 11, 2013 by Jennie Spotila

In recent weeks, some ME/CFS advocates have been calling for NIH to conduct a clinical trial of Ampligen based on the reasoning that NIH conducted trials of AZT during the early years of the AIDS crisis. Unfortunately, this analogy does … Continue reading →

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On the Shelf

Posted on February 7, 2013 by Jennie Spotila

I recently read Spillover by David Quammen, a book about human diseases that originate in animals. ME/CFS is not mentioned in the book, but a passage about the origin of HIV struck very close to home. Quammen describes how HIV … Continue reading →

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Highest Priority, Part Two

Posted on January 30, 2013 by Jennie Spotila

When I posted the other day about the CFS Advisory Committee’s list of High Priority Recommendations (pdf link), I said that I had done some digging and that what I found wasn’t pretty. To be blunt, what I found is … Continue reading →

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Highest Priority, Part One

Posted on January 28, 2013 by Jennie Spotila

Over the years, the CFS Advisory Committee has made dozens and dozens of recommendations to the Secretary for Health and Human Services. This month, the Committee posted a document entitled “High Priority Recommendations from CFSAC, January 2012” (pdf link) which … Continue reading →

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Gratitude

Posted on November 20, 2012 by Jennie Spotila

We celebrate Thanksgiving in the United States on Thursday, and you may have seen the 30 days of gratitude meme on social media this month. I decided to share my gratitude in one post, and focus on aspects of my … 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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Puzzle Pieces

Posted on October 30, 2012 by Jennie Spotila

Let’s play a game. Imagine you have a large puzzle that makes an Impressionist picture of a colorful cottage-style garden. You can put it together as long as you have the picture on the box. First you assemble the lower … Continue reading →

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