Author Archives: Jennie Spotila

Don’t Stop!

Posted on September 4, 2013 by Jennie Spotila

As of 11:09 Eastern this morning, the sole source contract notice for the IOM case definition was updated to read: Because of all of the concern from the public surrounding this potential sole source requisition, we have decided to discontinue … Continue reading →

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Simple Action

Posted on September 4, 2013 by Jennie Spotila

I am not the only ME/CFS patient worried about what kind of case definition the Institute of Medicine might create for my disease. I don’t have anything against the IOM. To the contrary, I recognize that it is an institution … Continue reading →

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If You Want Our Support

Posted on September 3, 2013 by Jennie Spotila

A week ago, ME/CFS patients found out about HHS’s plan to sole source a contract to the Institute of Medicine to create a consensus case definition for our disease when the sole source notice was published. Today, the CFS Advisory … Continue reading →

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Foreshadowing

Posted on September 3, 2013 by Jennie Spotila

The prospect of the Institute of Medicine creating a consensus case definition for ME/CFS scares me. It’s not free-floating anxiety or IOM-hatred. We have a current example of what this IOM contract might mean for ME/CFS and it’s not pretty. … Continue reading →

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IOM On The Case

Posted on August 29, 2013 by Jennie Spotila

No announcement and no fanfare, but it became public this week that the Office of the Assistant Secretary intends to award a sole source contract to the Institute of Medicine to create a consensus clinical definition for ME/CFS. Here’s the … Continue reading →

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Directional Signs

Posted on August 26, 2013 by Jennie Spotila

Last week, the CFIDS Association announced the formation of a Research Advisory Council and its newly appointed members. A close look at the roster reveals some interesting signs about the direction the Association may be headed, and it may surprise … Continue reading →

Posted in Research | Tagged , , , , , | 7 Comments

Drug and FDA News, August 2013

Posted on August 23, 2013 by Jennie Spotila

Next week, I will be attending the FDA’s Patient Representative Workshop for new patient reps. The meeting is 1.5 days of orientation and discussion, and I am eager to meet my fellow patient representatives. I will report back on the … Continue reading →

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The Full Ninety

Posted on August 22, 2013 by Jennie Spotila

Ninety-one days have passed since the last CFS Advisory Committee meeting. As of the date and time of this post, none of the materials related to the meeting have been posted on the CFSAC website. Federal law requires that the … Continue reading →

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CFSAC Interviews

Posted on August 20, 2013 by Jennie Spotila

Gabby Klein has written an article for Phoenix Rising that features interviews with CFS Advisory Committee members Dr. Gailen Marshall and Dr. Susan Levine, and non-voting members Dr. Kenneth Friedman, Leigh Reynolds and Dr. Fred Friedberg. It’s an interesting read, … Continue reading →

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Lightning Book Review: How To Wake Up

Posted on August 19, 2013 by Jennie Spotila

It’s time to debut a new sometime feature on the blog: Lightning Book Review, quick reviews of about 500 words to give you my bottom line opinion. Our debut is Toni Bernhard’s new book, How To Wake Up, officially released … Continue reading →

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