Category Archives: Advocacy

Jennifer Spotila, CFSAC Telephone Comment, December 2013

Posted on December 11, 2013 by Jennie Spotila

This is what I told CFSAC via telephone today. It took three phone calls for them to connect me to the meeting. My name is Jennifer Spotila. I submitted written comments for the record, and I’ve posted those to occupycfs.com. … 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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Sr. Sandra Duma, CFSAC Testimony, December 2013

Posted on December 11, 2013 by Jennie Spotila

Sr. Sandra Duma was scheduled to give her first ever CFSAC public comment yesterday, and like all the other Tuesday slots hers was unilaterally cancelled when Dr. Lee decided to dispense with the first day of the meeting. I’m happy … Continue reading →

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Mary Dimmock, CFSAC Testimony, December 2013

Posted on December 10, 2013 by Jennie Spotila

Mary Dimmock had a comment slot for Tuesday, and like all the other Tuesday slots hers was unilaterally cancelled when Dr. Lee decided to dispense with the first day of the meeting. did not receive a public comment slot. I’m … 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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IOM Panelists: The Knowns

Posted on December 7, 2013 by Jennie Spotila

In this post, we present profiles of the eight members of the Institute of Medicine ME/CFS definition panel who are known to the ME/CFS community in some capacity. Many, but not all, of them are ME/CFS experts in that they … Continue reading →

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IOM Panelists: The Unknowns

Posted on December 5, 2013 by Jennie Spotila

In this post, we present profiles of the seven members of the Institute of Medicine ME/CFS definition panel who were unknown to the ME/CFS community. You can read about the team who put this together and the methods we used … Continue reading →

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IOM Panelists: Method to Our Madness

Posted on December 5, 2013 by Jennie Spotila

My plan upon the announcement of the Institute of Medicine panel was to provide detailed write ups on all the members within 48 hours. Reality smacked me upside the head after about 24 hours. I am working with a wonderful … Continue reading →

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