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

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.


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4 Responses to Jennifer Spotila, CFSAC Telephone Comment, December 2013

  1. Ess says:

    Your frank telephone comments to the CFSAC are well warranted, Jennie. Thank you!

  2. Carrie says:

    Thank you for speaking up about the meeting issues. Indeed, it is a serious failure to serve the public interest.

  3. Ess says:

    On the main HHS website the HHS PRIORITIES are listed—MENTAL HEALTH is third in the column; LASTLY IS HIV/AIDS—there is NO mention of ME/CFS — NO ‘specific’ mention.

  4. Thank you Jennie for representing all of us. I am in awe of the work you’re doing, despite being so ill, to help bring ME/CFS into the mainstream of the medical community. What would we do without you?

    With love and respect,

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