No, I haven't fallen off the face of the earth! Sorry for the long silence - we were away on spring break last week, and this week is just insanely busy. I promise to catch up with you all soon.
In the meantime, I just want to pass along a message. The CFS Advisory Committee (CFSAC) here in the U.S. has still not announced a meeting date for their next meeting, which usually takes place in May. If you would like to be notified immediately when the meeting date is announced, you can e-mail Denise (at speakupaboutme at gmail dot com), who founded the Speak Up About ME advocacy group, and ask her to add you to her mailing list.
As soon as the CFSAC meeting is announced, anyone who wants a chance to give public testimony at the meeting (whether in person in Washington, DC, or by phone) will need to immediately send an e-mail to the committee, to request a speaking slot. Denise can let you know as soon as the meeting date is announced, and I will post it here, too (though probably not as quickly!)
If you want to know more about giving public testimony, just visit the Speak Up About ME blog, where Denise has recently posted about it. This semi-annual meeting is an excellent opportunity for our voices to be heard and for us patients to actually influence public health policy for CFS here in the U.S. (which usually influences public policy elsewhere also).
OK, back to my hundred or so new e-mails...back soon, I promise!
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.
thx for sharing....
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