Tag Archives: action

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

On The Record

Posted on November 22, 2013 by Jennie Spotila

Public comment for the CFS Advisory Committee is due next Friday, November 29th. That’s not much time to prepare and submit comments, but I believe that you should if at all possible (instructions are here). Here’s why: CFSAC and HHS … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 26 Comments

Don’t Lose Sight of CFSAC

Posted on October 22, 2013 by Jennie Spotila

The IOM controversy and the government shut down have been distracting, but CFS Advisory Committee deadlines are fast approaching. The CFSAC meeting is just three weeks away – November 12-13th – which means that public comment will be due soon, … Continue reading →

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

Lips Are Sealed

Posted on September 21, 2013 by Jennie Spotila

Whatever happened to that investigation we requested after the last CFS Advisory Committee meeting? Good question. You may recall that at the May 2013 CFSAC meeting, voting member Eileen Holderman alleged that she and two other members had been intimidated … Continue reading →

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

Precision Is Required

Posted on June 25, 2013 by Jennie Spotila

Post updated June 28, 2013. See end of post for additional information from FDA. Five ME/CFS advocates recently sent a letter to DHHS, FDA and select members of Congress requesting that FDA convene a second meeting with ME/CFS patients “to … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 20 Comments

Requesting an Investigation

Posted on June 18, 2013 by Jennie Spotila

You may recall that at the May 23, 2013 CFS Advisory Committee, voting members Eileen Holderman and Dr. Mary Ann Fletcher stated on the record that they had been intimidated for expressing their views. With assistance from two fellow advocates, … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 9 Comments

Perplexed

Posted on June 3, 2013 by Jennie Spotila

The good news, I guess, is that we survived another CFS Advisory Committee meeting. The bad news is that much of what happened made no sense to me. Some excellent summaries of the meeting are available, including this very detailed … Continue reading →

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

CFSAC Testimony May 2013

Posted on May 22, 2013 by Jennie Spotila

I submitted two versions of testimony to the May 22-23, 2013 CFS Advisory Committee meeting. My written testimony can be viewed here.  What follows is the testimony I delivered by telephone this morning: My name is Jennifer Spotila, and I … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 18 Comments

What To Look For

Posted on May 20, 2013 by Jennie Spotila

The CFS Advisory Committee will meet on Wednesday and Thursday this week (May 22nd and 23rd). The meeting will be webcast, and I’ll update with that information as soon as it becomes available. UPDATED: To call in to the CFSAC … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , | Comments Off on What To Look For

I Thank You

Posted on May 2, 2013 by Jennie Spotila

When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , | 5 Comments