Sorry for the silence - I've been far too busy to blog! We went to my mom's in Connecticut for the weekend and are leaving again tonight for Washington, DC, to participate in this week's CFS Advisory Committee meeting. This is the special awareness event I mentioned in an earlier post for focusing attention on kids and teens with ME/CFS.
At last count, they are expecting 35 participants from 14 different states. The kids and teens (and me!) will be wearing matching t-shirts, many people (including my family) will be giving testimony during the public comment period of the meeting, and we are also visiting our Congressional representatives to ask for more funding for ME/CFS research, with a special focus on pediatrics.
You can watch some or all of the meeting LIVE online. Just go to the NIH webcast website and click to watch. The event for kids and teens is tomorrow, May 11, and the public comment period tomorrow is between 1-2 pm Eastern time. So tune in to see my family and many others address the CFS Advisory Committee!
PANDORA and Denise Lopez-Majano have done a fabulous job of coordinating all of this. I am somewhat crashed from all the traveling we've been doing (in between CT and DC, Jamie and I drove to NJ yesterday to see our Lyme doctor), but we are all very excited to be able to participate. You can find me lying on the couch Thursday...
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.
2 comments:
You will be in my thoughts and prayers Sue....Wonderful that you are able to do this...You are so gifted in advocating for those with CFS and so many other areas too.
Sue,
What a wonderful opportunity for you and your family! We will all reap the benefits of your hard work.
God Bless,
Elaine
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