Tag Archives: government

IOM Panelists: Balance = Experts + Information – Bias

Posted on December 16, 2013 by Jennie Spotila

The issue on everyone’s mind is whether the Institute of Medicine panel is the right group to come up with a new ME/CFS clinical case definition. Our team has been debating this for nearly two weeks now, and we have … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 16 Comments

IOM Panelists: Balancing Act

Posted on December 13, 2013 by Jennie Spotila

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 44 Comments

(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 →

Posted in Advocacy | Tagged , , , , , , , , , , | 22 Comments

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 →

Posted in Advocacy | Tagged , , , , , | 8 Comments

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 →

Posted in Advocacy | Tagged , , , , | 4 Comments

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , | 10 Comments

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 →

Posted in Advocacy | Tagged , , , , | 4 Comments

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 →

Posted in Advocacy | Tagged , , , , | 11 Comments

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 →

Posted in Advocacy | Tagged , , , , , | 12 Comments

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 →

Posted in Advocacy | Tagged , , , , , | 6 Comments