The government has posted links to all of the public testimony that was delivered at the recent meeting of the CFS Advisory Committee (CFSAC). I haven't had a chance to read them all yet, other than those of a few close friends of mine, but what I have read so far has been moving, articulate, and heartfelt. You can read them yourself at this link - just scroll down to the public testimony section. You can also watch videos of the meeting or view slides of each of the presentations at that same link. If you are particularly interested in issues related to pediatric ME/CFS, be sure to check out the testimonies of Alexander Lopez-Majano, Denise Lopez-Majano, and Joan Militello - they are all a part of our local group for families of kids and teens with ME/CFS.
As I mentioned here before, I also submitted testimony to CFSAC but did not get a speaking spot. You can read my testimony at this blog post.
A huge thank you to all of the patients and family members who attended this meeting and gave testimony for all of us who were unable to.
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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