Tag Archives: DHHS

Yay, and Also Boo

Posted on March 3, 2014 by Jennie Spotila

Yay! The CFS Advisory Committee will meet on Tuesday, March 11th from 12-5pm. This is the makeup day for the meeting cancelled on December 10, 2013. Boo! This is another webinar, and one can only hope the technical aspects will … Continue reading →

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(Lack of) Progress Report

Posted on December 12, 2013 by Jennie Spotila

The December 2013 CFS Advisory Committee meeting was controversial before it began, and honestly things only went downhill from there. I don’t think I have it in me to list everything that was wrong with the meeting, and I’m pretty … Continue reading →

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Ess, CFSAC Testimony, December 2013

Posted on December 12, 2013 by Jennie Spotila

Ess submitted anonymous written comments for the public record. I’m happy to publish her comments in their entirety, using her screen name with her permission. Introduction Thank you very much for this most important opportunity to add written comments to … Continue reading →

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Jennie Spotila, CFSAC Testimony, December 2013

Posted on December 11, 2013 by Jennie Spotila

I submitted these comments in writing for the public record. However, given all that has transpired since then, I will not be delivering these remarks during my comment slot today. The relationship between ME/CFS advocates and the federal government has … Continue reading →

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Gabby Klein, CFSAC Testimony, December 2013

Posted on December 10, 2013 by Jennie Spotila

Gabby Klein was waitlisted for a public comment slot on both days of the 2013 CFS Advisory Committee meeting. I’m happy to publish her comments in their entirety. My name is Gabby Klein.  I became very ill in February 2003 … Continue reading →

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My Request to Dr. Lee

Posted on December 10, 2013 by Jennie Spotila

Dr. Lee, I know the government is closed today, and you may not be working. But I must appeal to you regarding the OWH decision to condense the two half-day CFSAC meetings into a single half-day. The list of mistakes, … Continue reading →

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CFSAC Last Minute Change

Posted on December 9, 2013 by Jennie Spotila

UPDATE 10:00am from Dr. Nancy Lee:   Because of a snow storm in the Washington DC area, the Federal Office of Personnel Management has closed all federal govt. offices in DC.  This includes the tech support we need for webinars. … Continue reading →

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Musical Chairs

Posted on December 2, 2013 by Jennie Spotila

Understanding the CFS Advisory Committee is not limited to what happens in the meetings. The paths that lead members to their seats at the table are very important too. Regular readers of this blog know that I’ve tracked the nomination … Continue reading →

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Which Disease Is HHS Studying?

Posted on November 27, 2013 by Jennie Spotila

I am very pleased to share space today with Mary Dimmock. She has written this guest post about which disease HHS has asked IOM to define. Her conclusion will probably increase any concerns you have about the IOM study. Mary … Continue reading →

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Nothing to See Here

Posted on November 25, 2013 by Jennie Spotila

After more than four months, Assistant Secretary Dr. Howard Koh has finally responded to our request for an investigation into the allegations that Dr. Nancy Lee attempted to intimidate at least two voting members of the CFS Advisory Committee. His … Continue reading →

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