Tag Archives: speaking out

What To Look For

Posted on May 20, 2013 by Jennie Spotila

The CFS Advisory Committee will meet on Wednesday and Thursday this week (May 22nd and 23rd). The meeting will be webcast, and I’ll update with that information as soon as it becomes available. UPDATED: To call in to the CFSAC … Continue reading →

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2012 NIH Spending on CFS Studies

Posted on May 15, 2013 by Jennie Spotila

Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research. NIH spending on ME/CFS research has been controversial since I’ve been in advocacy, largely because the funding numbers are so low compared … Continue reading →

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CFSAC Input Template

Posted on May 10, 2013 by Jennie Spotila

If you subscribe to the CFS Advisory Committee email list, then you may have seen the preliminary agenda that went out last night. The High Priority recommendations list was not on it BUT we have confirmed with Dr. Nancy Lee … Continue reading →

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Why and How to CFSAC

Posted on May 9, 2013 by Jennie Spotila

I wrote an article for Phoenix Rising about a few things we can expect at the upcoming CFS Advisory Committee meeting on May 22-23rd. Today I want to focus on why you should participate, and how to do so. This … Continue reading →

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Full Text CFSAC Recommendations

Posted on May 7, 2013 by Jennie Spotila

As I’ve reviewed elsewhere in great detail, the CFS Advisory Committee will be discussing which recommendations should be designated “high priority” at their meeting on May 22-23rd. We now have the opportunity to voice our own views about which recommendations … Continue reading →

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Patient Representative

Posted on May 6, 2013 by Jennie Spotila

As of today, I have been appointed to the FDA’s Patient Representative Program. This has actually been in the works for awhile, and I’ve been anxious to tell you about it, but it finally becomes official today. The FDA Patient … Continue reading →

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I Thank You

Posted on May 2, 2013 by Jennie Spotila

When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most … Continue reading →

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What a Crash Looks Like

Posted on April 29, 2013 by Jennie Spotila

On the suggestion of my friend Claudia, I recorded a video of myself on the third day after the FDA Drug Development Workshop on ME and CFS. I had to swallow my pride to do this. Even some members of … Continue reading →

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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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Vincent Departs

Posted on April 19, 2013 by Jennie Spotila

Eagle-eyed Tom Kindlon posted on Twitter last night that Dr. Ann Vincent’s name has been removed from the CFS Advisory Committee roster. It appears that Dr. Vincent has resigned, although I have no information on when or why she may … Continue reading →

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