Email to Dr. Lee: Request to Cancel Today’s CFSAC Meeting

Dear Dr. Lee,

Thank you for sending the updated agenda for today’s CFSAC meeting 1.5 hours before the start of the meeting. I take that to mean that the meeting will take place although the email did not expressly say so.

Is there any plan to contact today’s speakers by phone to let them know that their comment time was cut to 3 minutes? As far as I know, this has not happened yet. The comments are scheduled to be given in less than 2.5 hours. Not everybody checks their emails frequently. Seamon Corporation has in the past contacted speakers about their public comments. Why is this not happening here when it’s clearly crucial that speakers are aware that they only have 3 minutes instead of the promised 5 minutes? Will you just cut speakers off at 3 minutes?

Also, what will happen to the 5-minute “video” comments? Are they just not going to be “shown” at all or will they be cut off at 3 minutes? For the record, I object to having my video cut off at 3 minutes. I also object to the fact that only the audio portion of videos will be shown, if at all. Had I known that the video part of my “video comments” will be excluded, I would have opted for phone comments. This was not made clear in the instruction for the meeting and I am sure you would agree that it’s not at all reasonable to suspect that.

I hereby renew my request to cancel today’s meeting and schedule a proper in-person, two-day meeting in January. It appears that the sequester may be over, so the excuse for the webinar format is not in place anymore. Let alone that no other federal advisory committee seems to have changed their format. ME patients clearly receive special treatment, not the good kind.

Again, for the record, the patient community has never been this upset. The disrespect that HHS has demonstrated with regard to the handling of this meeting is unprecedented and absolutely astounding. The questions regarding the meeting qualifying as a public meeting and regarding accommodating disabled people remain unanswered.

Sincerely,
Jeannette Burmeister

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3 Responses to Email to Dr. Lee: Request to Cancel Today’s CFSAC Meeting

  1. Ess says:

    Thank you for sending the e-mail letter to Dr. Lee, Jeannette, and speaking to the INEQUITIES of ‘said’ farcical meeting. YESSS, we are plenty UPSET and with PROVOKED reason!!

    Reply

  2. susanna says:

    Possibly this is just the result of normal bureaucratic indifference and insensitivity. In any case they ought to know that they are dealing with a particularly vulnerable and badly treated group of people and have more sense and sensitivity.

  3. Pingback: CFSAC Meeting December 2013: Webinar from Hell | Thoughts About M.E.

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