I spent most of yesterday watching the first day of the CFSAC meeting, broadcast live over the internet from Washington, DC. It was their first-ever Science Day, a day filled with presentations from the top CFS scientists and doctors on the latest research. It was excellent and so amazing to be able to watch the whole thing while lying on my couch! I had wanted to go in person but am flying solo this week while Ken's traveling. I also turned out to be fairly badly crashed the past two days, so I was extra-grateful for the webcast.
Much of today's meeting is focused on disability benefits and Social Security - topics that don't affect me directly - so I left the couch for a short while and joined a friend on a Trader Joe's run (with Ken away, I had to stock up on ready-to-heat meals!). However, I did rush back home in time to tune in to the public comment period. I'm so glad I did.
Hearing the heartfelt testimony and pleas of long-suffering CFS patients was very moving - I broke out in tears several times. The highlight of the testimony (in my biased opinion!) was a friend of mine, one of our local CFS moms who has two teen boys, 17 and 19, with severely debilitating CFS. She and her boys made the trip to DC. I cried so hard through her entire 5 minutes that I could barely see the computer screen! Her testimony about what daily life is like for her and her boys, including some of it in their own words, was powerful and heartbreaking. You did a great job, Denise!
The meeting is on lunch break now but resumes again this afternoon at 1 pm eastern time, then continues again tomorrow morning at 9 am. I highly recommend you watch at least some of it. The second public comment period begins tomorrow afternoon at 1 pm. Here is the full meeting agenda so you can tune in for the parts that interest you. The technology is very cool! I use a Mac and had to download an extra application to watch it, but it only took a couple of moments. I know Jo logged in from the UK to see part of it yesterday, so it's available to anyone on the internet. Here's the link for the live videocast.
I will post my own summary, plus links to the presentations and online videos once they are posted. I was just so amazed by what I've seen that I wanted to share a bit with you while you still have a chance to watch live.
Lunch time, then nap, then Craig's soccer game...
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.
Thanks so much for the info. I've been too busy to watch and will look forward to your summary and comments. Try not to overdo while flying solo!!
ReplyDeleteI listened in rather than saw, but it was interesting.
ReplyDeleteCFS/ME is a disabling illness, as much as MS is. Attitudes have still to change to regard it as such and these attitudes inform everything from research to find a cure to providing affected people with enough money to live on.
I'm not surprised you responded emotionally. My own emotional response is currently extreme anger at not being believed. The work you do here on your blog helps change those attitudes. Thanks :-)
Thanks, Jo!
ReplyDeleteGreat that you were able to watch... that would indeed be very emotional, especially hearing a close friend!
ReplyDeleteFor me it's too much stimulus to follow the politics much. I think people are really brave to be publicly speaking about their illness and to be at such a high intensity event. I get dizzy thinking about it, really! So thanks for the info second hand.
Jo, I also feel a great deal of anger, which is not natural to my personality. Anger takes too much of my energy so I tend to wall myself off from contemporary events as best I can.
Serious accolades to all those who participated or even watched!
D.
I didn't watch this year because of MD appts and crashing. I heard they proposed a name change?
ReplyDeleteDid you hear that?
Thanks for the report on the first day.
I hope you get lots of chances to rest while flying solo!