Author Archives: Jennie Spotila

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 →

Posted in Advocacy | Tagged , , , , , , , , | 26 Comments

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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Comparing Exercise Advice

Posted on January 18, 2013 by Jennie Spotila

Exercise is an issue for every CFS patient, and there is no shortage of advice on whether and how to do it. On January 14th, the CDC hosted a conference call as part of its Patient Centered Outreach and Communication … Continue reading →

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Best Laid Plans

Posted on January 15, 2013 by Jennie Spotila

This is not the day I planned to come back from my holiday hiatus, nor is this the post I planned for the beginning of a new year. But as they say: “The best laid plans of mice and men … Continue reading →

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Hiatus

Posted on December 18, 2012 by Jennie Spotila

Sing with it with me: It’s the most challenging time of the year! Some CFS patients I know feel like summer is the most challenging time, between the heat and kids being off school. For me, it’s the holidays. Every … Continue reading →

Posted in Occupying | Tagged , , | 8 Comments

NIH Collaboration

Posted on December 17, 2012 by Jennie Spotila

The news didn’t make much of a splash, but NIH recently issued a funding opportunity announcement that could benefit people with CFS. This purpose of this funding opportunity is to support “collaborative translational research projects” aimed at turning basic discoveries … Continue reading →

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Coffee

Posted on December 13, 2012 by Jennie Spotila

I graduated with honors from an Ivy League law school, and it was largely made possible by coffee. There was a Cinnabon right around the corner, so most mornings I picked up a ginormous vat large cup to get the … Continue reading →

Posted in Occupying | Tagged , , , , , | 10 Comments