Tag Archives: occupy

Guest Post: Homeless

Posted on February 10, 2014 by Jennie Spotila

I continue to struggle with the crash from hell, but Joe Landson has graciously stepped up to provide a guest post. His chance encounter on the streets of Washington, DC gave him a powerful insight into our own advocacy situation. … Continue reading →

Posted in Commentary | Tagged , , , , , , , | 24 Comments

The Finger

Posted on February 3, 2014 by Jennie Spotila

Last week, my body gave me the finger. I can’t even say I didn’t deserve it. After more than 19 years, I still don’t always listen to my body and this makes her very, very angry with me. I’ve previously … Continue reading →

Posted in Occupying | Tagged , , , , , | 44 Comments

Accurate and Precise

Posted on January 27, 2014 by Jennie Spotila

This is the text version of my presentation to the Institute of Medicine Panel today. I delivered my comments remotely, because a fever has kept me bedridden for three days. I tried to speak as naturally and extemporaneously as possible, … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 55 Comments

At the Microphone

Posted on January 20, 2014 by Jennie Spotila

Next Monday, the IOM Panel creating new diagnostic criteria for ME/CFS will hold a public meeting. This may or may not be the only public meeting for the study, and it will be webcast. As you can see, I am … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 85 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

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

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

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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Giving Thanks

Posted on November 30, 2013 by Jennie Spotila

November has become a gratitude month in the US, with Thanksgiving happening this week. Last year, I posted a list of ME/CFS related things I was grateful for, and I think it might be a healthy tradition to maintain. I … Continue reading →

Posted in Occupying | Tagged , , , , , , | 8 Comments

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 29 Comments