tag:blogger.com,1999:blog-22576999.post2983438523980042275..comments2024-03-27T14:05:22.815-04:00Comments on Live With ME/CFS: CFSAC Meeting May 11Sue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-22576999.post-75012057135359915482011-05-15T13:59:45.621-04:002011-05-15T13:59:45.621-04:00Well done, Sue!Well done, Sue!Laurelhttps://www.blogger.com/profile/01688914443102913569noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-19976493798864294612011-05-15T11:24:51.430-04:002011-05-15T11:24:51.430-04:00Sue - thank you so much for your heroic efforts in...Sue - thank you so much for your heroic efforts in getting your whole family to the CFSAC meetings. I am very encouraged to hear the response of people who were at the meeting at that time.<br /><br />MaxineMaxinenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-44354315950165444882011-05-14T08:07:11.868-04:002011-05-14T08:07:11.868-04:00TwoBoysMom -
Sorry to hear Valcyte didn't wo...TwoBoysMom - <br /><br />Sorry to hear Valcyte didn't work for your son. Anti-virals have helped me a tiny bit but didn't have a big effect. Is he receiving treatment for OI? That typically helps teens and kids more than anything.<br /><br />This committee DOES understand how many people (kids and adults) could never make the trip to a CFSAC meeting. One important thing to recognize is that this group is on our side - it is made up of some of the top doctors and researchers in the ME/CFS world. They see patients and they understand how bad ME/CFS can be. The trick is for the NIH and CDC to accept this committee's proposals and actually DO something. This meeting included some top-level people from NIH who seemed very receptive and understanding of the the need for action. Things have definitely changed from 5 years ago and are continuing to move forward.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-10220798632706941692011-05-13T23:33:55.672-04:002011-05-13T23:33:55.672-04:00Hi Sue,
Thank you for posting, by the time I got o...Hi Sue,<br />Thank you for posting, by the time I got on the computer to watch live - it was too late here on the west coast. Glad to see the kids!! Very emotional to say the least. Glad that NIH is considering funding pediatric studies. My son is now off Valcyte and unfortunately a nonresponder overall. Looking into other possibilites for his health. I hope these NIH members understand that there are many kids who couldn't possibly travel, my son is housebound. It would have been way too much for him to get there.<br />Much Love and Wishes for Better Days Ahead...Keep up the good fight!<br />TwoBoysMomAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-4156006698153752792011-05-13T18:04:59.131-04:002011-05-13T18:04:59.131-04:00IAmMe - thanks. I totally understand abut not bei...IAmMe - thanks. I totally understand abut not being able to watch it all at once. I was sobbing in the meeting, and one mom and dad had to leave the room during the public comment. It was very moving.<br /><br />Lee - The dearth of online activity yesterday may have been partially due to Blogger being unavailable all day - no one could post blog posts on Blogger or leave comments on Blogger-hosted blogs. Plus, for us, we were exhausted from the CFSAC meeting! Lots of key people were at the meeting, so that might have impacted yesterday, too.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-24176038197840152732011-05-13T17:41:30.413-04:002011-05-13T17:41:30.413-04:00That's so great, Sue! I was sort-of dishearte...That's so great, Sue! I was sort-of disheartened by the lack of May 12 activity, but you seem like you really got out there and made some noise. And so did your kids! Thanks to everybody.Leehttps://www.blogger.com/profile/07598902383588588136noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-30430253476105504972011-05-13T17:12:54.651-04:002011-05-13T17:12:54.651-04:00Thank you so much for sharing!
I watched parts of...Thank you so much for sharing!<br /><br />I watched parts of each day and it was truly emotional! I couldn't finish all of the public sessions because it was too emotional for me at the time. It was great to hear you share part of the story of your boys.<br /><br />That is so great to hear! Not only will there be positive action happening, but you also got great support and questions from others you know!Sarah Dawneéhttps://www.blogger.com/profile/07705550127874942327noreply@blogger.com