I spent the day today hanging out on the Whittemore Peterson Institute's Facebook page while at the same time watching the testimony taking place at the CFSAC (Chronic Fatigue Syndrome Advisory Meeting) meeting in Washington, DC. It was a great place to hang out and "talk" with other ME/CFS/XAND patients who were also watching.
It was an emotional day. I'm crashed and have a splitting headache along with feeling dizzy from the high dose of Keflex I'm taking so this will be a brief post. I wanted to post the testimony of Annette Whittemore who is the President and founder of WPI. She also has an adult daughter who suffers from this disease for twenty (?) years. Her testimony followed Dr. Peterson's. I can only imagine how heartbreaking it has been for her to watch her daughter suffer from this illness since age 12. Here's her testimony. It was posted on youtube by khalyal. If it weren't for Annette Whittemore's tireless determination to get help for her daughter I don't think XMRV would have been discovered. Or at least not for a very long time the way things were going. She and everyone involved with the WPI are true heroes. I'm also trying to find videos of Dr. Mikovitz who is another heroine. All I have to say is God Bless these people. Words are inadequate to express the depth of gratitude I have for them.
Thursday, October 29, 2009
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6 comments:
What a great post. Very encouraging. As a caregiver/advocate of a girl who became sick with this illness when she was 12 years old and, luckily, is managing at about 70 - 75%, my biggest fear is that it will return full force. This gives me tremendous hope for her future.
Thank you for sharing so much in these last two posts and most of all for spending yesterday engaged in the important happenings of the day so that you can share them with us.
I understand the exhaustion that ensues with having ME/CFS and the amount of concentration that must have taken. (I've had ME/CFS for over twenty years and my cognitive window has grown very narrow--and the ensuing symptoms quite severe. I could not have taken part and thank you and others for doing so...and taking the physical and cognitive consequences)
Yeah--on your beginning XMRV virus tx. trials. To know its a reality gives such hope. May I link my blog to your post about beginning tx.trial--as a way to spread the hope?
hi
i'm a fellow cfids/lyme sufferer in berkeley. i just rec'd my positive xmrv test results. i see cheney, but would like to find someone to back him up in the bay area. will you share who you see?
thanks so much.
warmly, lisa in berkeley
Hi Lori-
I'm glad you found the post encouraging. I think there is reason for hope.
When it becomes available I'll post Dr. David Bell's testimony who talked about pediatrice ME/CFS. It was very good.
Terri
Hi Kerry-
It's nice to "see" you again! Thank you for your kind words.
The cognitive window and other symptoms seem to shrink and increasee respectively don't they?
I have such respect for you and others who have suffered with this for so many years.
I'll be posting more videos as I find them.
Terri
Hi Lisa-
I'm in the next city to you. Contact me at cfswarrior@gmail.com and I'll be happy to share the name of my doctor with you.
Did Dr. Cheney test you for XMRV?
When you write me we can talk more.
Terri
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