Tag Archives: action

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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Two Surveys, Two Opportunities

Posted on March 22, 2013 by Jennie Spotila

In addition to all the ways you can participate in and comment on the upcoming FDA Drug Development for ME/CFS Workshop, you can also participate in two surveys that will collect data for presentation at the Workshop. The CFIDS Association … Continue reading →

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

Showcase

Posted on March 19, 2013 by Jennie Spotila

The upcoming FDA Drug Development Workshop for ME/CFS will be a showcase for our disease and our patient community. We must prepare now to bring our A game on April 25th-26th. FDA first announced this workshop in the summer of … Continue reading →

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Quick Announcement

Posted on March 18, 2013 by Jennie Spotila

Finally (!) I am able to share the news that I’ve been invited to serve on a panel at the upcoming FDA Drug Development for ME/CFS Workshop. I’ve wanted to announce this for awhile, but panelists were asked not to … Continue reading →

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No News is No News

Posted on March 4, 2013 by Jennie Spotila

The ME/CFS advocacy community has been hopping recently, with participation in the FDA meeting on Ampligen, my effort with Public Citizen, and Bob Miller’s hunger strike. We’ve been anticipating some sort of response from HHS, especially in the wake of … Continue reading →

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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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2011 NIH Spending on CFS Studies

Posted on July 16, 2012 by Jennie Spotila

At the June 2012 CFS Advisory Committee meeting, Dr. Susan Maier from the NIH Office of Research on Women’s Health reported that NIH funding of CFS research in 2011 totaled $6.3 million. In the past, advocates have questioned whether studies … Continue reading →

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