Author Archives: Jennie Spotila

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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Hypersensitive

Posted on August 13, 2013 by Jennie Spotila

FDA recently issued a warning about the risk of rare but serious skin reactions to acetaminophen. Widely known by the brand name Tylenol, acetaminophen is an active ingredient in many prescription and over-the-counter medicines for pain, headaches, migraine, cold and … Continue reading →

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Need to Reality

Posted on August 5, 2013 by Jennie Spotila

One of the key moments of the April FDA meeting on drug development for ME/CFS was when Bernard Munos said that ME/CFS patients will have to collect and pool their data to attract the interest of big pharma. Many advocates … Continue reading →

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Answering Attacks

Posted on July 31, 2013 by Jennie Spotila

When I posted about the “truthiness” I saw in a comment by Dr. Mikovits, I expected criticism. I’ve heard from folks in the comments, on Twitter and Facebook, and by email. I think some of the points and questions raised … Continue reading →

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Facts, Not Spin

Posted on July 29, 2013 by Jennie Spotila

I need to speak out about something, in part because I’m afraid no one else will. I’ve been following the comments posted in the FDA docket on ME/CFS, and I came across this comment from Dr. Judy Mikovits: During the … Continue reading →

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Drug and FDA News, July 2013

Posted on July 25, 2013 by Jennie Spotila

The big BIG reminder for the ME/CFS community is that the public comment docket on drug development for ME/CFS will close on August 2, 2013. As of this morning, there are only 201 comments! That’s disappointing, given that FDA said … Continue reading →

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How To Be Sick (Giveaway!)

Posted on July 15, 2013 by Jennie Spotila

I have been a fan of Toni Bernhard’s book How To Be Sick since it first came out in 2010. There is now an audiobook version available, which is fantastic for people who are too sick to read, and we … Continue reading →

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