Last week (was it only just last week?), I attended the Fall 2012 CFS Advisory Committee Meeting at the Department of Health and Human Services. I was only able to be there for a few hours, and I gave my testimony during the public comment period. The HHS has posted video clips of each section of the meeting on Youtube, so I thought I'd share the links here for everyone who wasn't able to attend the meeting.
I think I will post the clips from Day 1 here and the clips from Day 2 in another post, so it's not too long.
Welcome and opening remarks:
Presentation: Biomarkers: An Overview and Future Look:
Public Comment Period #1 (am): My testimony is at 11 min, 15 sec, Denise Lopez-Majano, founder of Speak Up About ME, gave her son's testimony starting at 44:35, and the last speaker is Laura Hillenbrand's father.
Agency Updates from HRSA, NIH, and FDA:
FDA and Drug Development:
Public Comment #2 (pm): Faith Newton gives her testimony at 30 minutes; Faith is a good friend of ours - her teen son has CFS and goes to the same high school as my sons and she is an educational expert.
Committee Discussion and Plans for Day 2:
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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