Sorry for not posting much this week. I know you're all eager to hear more about the CFSAC meeting. I've just been incredibly busy taking care of the kids and the house on my own this week. Besides all the usual school and soccer stuff, both boys had two days this week when they got out of school early, Jamie had an orthodontist appointment, and our cleaning service came yesterday (which means I had to scramble to pick up all the stuff still all over the floor from last weekend's camping trip). This morning, I need to head out to the grocery store. Thank goodness Ken comes home today - hurray! I've missed his help and also his company.
So, just quick post this morning.
The biggest news from the CFSAC meeting was a unanimous vote to change the name of the committee immediately to ME/CFSAC and to request an official name change to ME/CFS from the US government's Department of Health and Human Services. Yay!! It's about time. Here's a news article with details of the proposed name change (thanks for forwarding the news article, Martine!)
And, here is the page with links to videos of all 3 days of the CFSAC meeting (see Archived Video links at the bottom). I highly recommend the first day, the Science Day presentations. There were no politics or boring meeting formalities on Day 1, just a series of very informative presentations from CFS expert doctors and researchers. I watched most of Day 1 (except for the afternoon during nap and Craig's soccer time), and I promise to post my notes when I have a bit more time (probably next week but maybe later today). I also recommend the public comment periods on Days 2 and 3 (10:45 am on Day 2 and 1 pm on Day 3).
So, that's it for now. Another busy day with more driving kids around! On Sunday, two local CFS moms and I are going to attend the New Jersey CFS Association's Fall Conference. The line-up of speakers looks great, including my own ID doc. It will be a long day for me, but one of my friends is doing most of the driving, so I'm hoping I manage OK. Plus, we have soccer games, friends over, and Jamie's homecoming dance this weekend...whew.
Hope you have a good weekend!
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.
4 comments:
Thanks for the info Sue....hang in there for your conference and busy busy weekend....Yikes!
I already changed all references that I make on my blog to ME/CFS or just ME. The door just opened, so I'm running through it. I posted Patient Advocate's post today from the mtg. It was great! You might want to take a look at it!
Thanks for the shout-out Sue! Brush with greatness ; )
You don't let any grass grow, missy!!
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