My Request to Dr. Lee

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, incompetence, and blatant misstatements related to the planning of this meeting was already long, too long for me to list here. But this latest decision disenfranchises all the patients scheduled to speak today, and will undoubtedly materially impair the Committee’s ability to discuss and consider the issues on the agenda.

OWH has an opportunity here to make a decision that will be welcomed by the advocacy community. OWH has a chance to do the right thing, and demonstrate respect for both ME/CFS patients and the gravity of the Committee’s work. Or OWH can barrel ahead with this ridiculous farce of a half-day session, and reap the criticism that will undoubtedly follow.

Please postpone this meeting. Take the time to properly plan the meeting, with all the appropriate public notice and comment requirements, and hold it in January.

Sincerely,
Jennifer Spotila

This entry was posted in Advocacy and tagged , , , , , . Bookmark the permalink.

6 Responses to My Request to Dr. Lee

  1. Thanks for writing to her, Jennie!

    Hopefully (especially if many other people write to her as well) the rescheduled event will revert to the previously used format of a two-day live meeting with video conferencing, rather than two half-days of just teleconferencing.

    The address:

    Nancy.Lee@hhs.gov

  2. Billie Moore says:

    Excellent!

    Bilie

  3. Ess says:

    You did it, Jennie–way to go!!!!!

  4. Shirley says:

    Thank you for that Jennie!

  5. Justin Reilly says:

    Thanks for taking a stand, Jennie. You are 100% right.

  6. Judy K Pals says:

    Thanks for all your hard work!

Comments are closed.