Author Archives: Jennie Spotila

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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Care and Services Recommendations

Posted on March 8, 2013 by Jennie Spotila

See Part One – Tangled Web See Part Two – CFSAC Specific Recommendations Only ten recommendations are assigned to this category. See pages 12 – 15 of the Recommendations Chart (pdf link). Most relate to the categorization of CFS in … Continue reading →

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CFSAC Specific Recommendations

Posted on March 7, 2013 by Jennie Spotila

See Part One – Tangled Web The CFSAC Specific category contains eleven recommendations regarding the Committee’s own operation. See pages 16 – 18 of the Recommendations Chart (pdf link). However, one recommendation concerns the case definition so I will cover … Continue reading →

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Tangled Web

Posted on March 6, 2013 by Jennie Spotila

The CFS Advisory Committee has hit the reset button on their High Priority Recommendations, which means we will have a chance at the next meeting to offer our input on the list. We can tell the CFSAC which of their … Continue reading →

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No News is No News

Posted on March 4, 2013 by Jennie Spotila

The ME/CFS advocacy community has been hopping recently, with participation in the FDA meeting on Ampligen, my effort with Public Citizen, and Bob Miller’s hunger strike. We’ve been anticipating some sort of response from HHS, especially in the wake of … Continue reading →

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Swift Response

Posted on March 1, 2013 by Jennie Spotila

I am pleased to share with you the response from HHS to Public Citizen’s letter to the Acting General Counsel about the CFSAC High Priority Recommendations. Public Citizen wrote to the Acting General Counsel on my behalf on February 14th, … Continue reading →

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Coverage

Posted on February 25, 2013 by Jennie Spotila

Thank you, everyone, for your comments on my Public Citizen story. I’ve heard from you on the blog, email, Facebook and Twitter. Thanks! We are still awaiting a formal response from the Acting General Counsel of HHS. I will share … Continue reading →

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