Tag Archives: DHHS

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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Clarity on Comment

Posted on March 28, 2013 by Jennie Spotila

As I said when the FDA formally announced the commenting process for the Drug Development Workshop, the process will be very different from what we’re used to from CFS Advisory Committee meetings. At the CFSAC, we sign up for a … 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 →

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Evidence Based at NIH

Posted on March 21, 2013 by Jennie Spotila

Last year, NIH said it was undertaking a process to identify a research case definition for ME/CFS, but individuals like me were unable to get any additional information about what NIH intended. Now additional information has been made public in … Continue reading →

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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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Tell It To The FDA

Posted on March 15, 2013 by Jennie Spotila

The much anticipated FDA meeting on drug development for ME/CFS on April 25-26th is fast approaching, and your participation is needed! There is a great deal of time set aside for patient input, but the process will work very differently … Continue reading →

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News That Is Mostly Not

Posted on March 13, 2013 by Jennie Spotila

This week, the CFS Advisory Committee made two announcements that I think you will want to know about. First, the spring CFSAC meeting will be May 22-23rd in Washington, DC. There is no additional information about the agenda, beyond the … Continue reading →

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Research Recommendations

Posted on March 12, 2013 by Jennie Spotila

See Part One – Tangled Web See Part Two – CFSAC Specific Recommendations See Part Three – Care and Services Recommendations See Part Four – Education and Training Recommendations Appropriately enough, the CSFAC has made more recommendations on research than … Continue reading →

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Education and Training Recommendations

Posted on March 11, 2013 by Jennie Spotila

See Part One – Tangled Web See Part Two – CFSAC Specific Recommendations See Part Three – Care and Services Recommendations The CFSAC lists fourteen recommendations in this category, but I covered one recommendation on ICD-10-CM in the Care & … Continue reading →

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