Thursday, May 29, 2014

CFSAC Meeting June 16-17

The 2014 Spring Meeting of the CFS Advisory Committee (CFSAC) will be held on Monday, June 16, 2014, from 12:00 p.m. until 5:00 p.m. (ET) and Tuesday, June 17, 2014 from 9:00 a.m. to 5:00 p.m. E.T. and take place at the Department of Health and Human Services, Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Great Hall, First Floor, Washington, D.C. 20201. CFSAC is a part of the U.S. Department of Health & Human Services and usually meets twice a year.

The entire 2-day meeting is open to the public, with time set aside for public comment. If you'd like to attend the meeting or provide public comment (you don't have to be physically present to give testimony - you can do it via phone or ask for someone else to read your testimony during the meeting), you can register at this website. You have to submit a copy of your written testimony when you register, but you can make changes up until the meeting. If you are able to attend in person, it is a wonderful experience to meet others in a similar situation.

I have attended a CFSAC meeting twice before, once with my whole family, and presented testimony both times. Here is a video of our testimony from one year, with my sons on either side of me (my husband was there, too, but got cut out of the video!):

The meeting will also be live-streamed through this website, and you can view archived video of past meetings here.

In the past 10 years, the ME/CFS patient community has made great strides in joining together and making our voices heard, but we need for all patient voices to be heard! Make plans to participate in CFSAC in any way that you can - whether it's watching the live webcast from home (they keep track of how many people sign up and watch), submitting testimony to be read over the phone or by proxy, or actually attending the meeting, your voice as a patient can be heard and counted.

I haven't decided yet whether I can attend in person this time - my husband will be out of town that week - but I do plan to submit testimony and watch as much as I can online, if I can't go.

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