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Author Archives: Jennie Spotila
(Lack of) Progress Report
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
Posted in Advocacy
Tagged CDC, CFSAC, DHHS, government, NIH, occupy, politics, priorities, recommendations, speaking out, testimony
22 Comments
Ess, CFSAC Testimony, December 2013
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
Jennifer Spotila, CFSAC Telephone Comment, December 2013
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
Jennie Spotila, CFSAC Testimony, December 2013
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
Posted in Advocacy, Commentary
Tagged CFSAC, DHHS, government, occupy, politics, speaking out, testimony
10 Comments
Sr. Sandra Duma, CFSAC Testimony, December 2013
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
Mary Dimmock, CFSAC Testimony, December 2013
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
Gabby Klein, CFSAC Testimony, December 2013
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
My Request to Dr. Lee
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
CFSAC Last Minute Change
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
Posted in Advocacy
Tagged CFSAC, DHHS, government, occupy, politics, speaking out
Comments Off on CFSAC Last Minute Change
IOM Panelists: Balancing Act
There is a good deal more to discuss about the Institute of Medicine ME/CFS case definition panelists beyond their individual backgrounds (see the known and unknown panelists’ profiles). Our team has been grappling with those issues, not always achieving consensus. … Continue reading →