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.
Unfortunately, I have to say that the management and execution of this meeting has been dismal from start to finish. Your decision to hold this meeting today, everything that preceded that decision, and the technical difficulties we’ve experienced today have all undermined the public trust and the fundamental ability of this Committee to function. You have demonstrated a lack of respect for ME/CFS patients and for the importance of the Committee’s substantive work. This is a serious failure to serve the public interest.
Many advocates, including myself, have dedicated hours to working to improve CFSAC, to supporting CFSAC, and trying to improve the impact of its work on patients. This is personally disappointing to us. I gladly cede the remainder of my time to my fellow advocates.