Just a quick note.
Here is a link to ALL of the testimony from the CFSAC meeting on Monday, both those were present and spoke at the meeting, as well as those like me who submitted written testimony ahead of time. It's quite a list! Lots of voices out there representing us - let's hope someone is listening!
Also, Annette Whittemore (yes, THAT Whittemore) is putting together some sort of public education effort on pediatric CFS and how it effects kids. Right now, I think they're looking at a TV segment featuring Dr. Donnica Moore, a wonderful CFS spokesperson who has appeared on Good Morning America and on the Dr Oz Show and who's own teen son has CFS.
So, they're looking for parents who might be willing to share their kids' or teens' CFS stories. I've already offered mine, based on my written testimony for CFSAC. Please e-mail me (my e-mail link is on my profile page) if you might be interested in helping with this project. Let's spread the word and help our kids!!
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.
5 comments:
Thanks for this, Sue! I'm not sure if I know anyone that can help in the kid department, but will ask around.
Sue ~
John Herd, the actor, spoke? I wonder if he has CFIDS? I wonder why we don't hear from Laura Hillendrand or Michelle Akers ever? (The author of Seabiscuit, and the former professional women's soccer hero.)
Thanks for your post!
Oh, please check out the Let Your Voice Be Heard Through Virtual Lobby Day 2010 link I posted at my Blog!
Judy
Hi, Judy -
Uh...I don't actually know who John Herd is, so I can't answer that question!
I do know that Laura Hillenbrand is just too sick to do much advocacy, though she has lent her name to a few events - she is rarely able to leave her house and pours all her energy into writing.
I think Michelle Akers is doing a bit better, and she is now involved in a horse rescue operation. ESPN just did a special on her! I saw the promo but missed the full show -maybe it's online.
We could sure use a celebrity spokesperson! Blake Edwards, the director, also has CFS but generally keeps his personal life private.
We need a Michael J. Fox!
Sue
P.S. I will check out your post - I tried to sign up to follow your blog, but it wouldn't let me - you might want to check your settings to see if following is turned on.
Hi Sue ~
Oh no! cuz my Blog is set to allow Followers, and there are five so far, including you. I hope folks can get through. I still can't figure out how to put titles on my posts...
Will check for Michelle on ESPN online.
Thanks, Judy
Thanks for posting links to the CFSAC testimony. I was too wiped out to find it myself.
That's great news that Annette Whittemore and Dr. Donnica are generating ideas, etc....regarding kids with this.
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