Friday, June 08, 2012

Pediatric CFS Topic at June CFSAC Meeting!

I have great news about the agenda for the upcoming CFS Advisory Committee (CFSAC) meeting being held on June 13-14 in Washington, DC.  Our attendance, testimony, and pleas at last May's meeting must have worked because they are devoting a large portion of Day 1's agenda to the topic of pediatric/early onset ME/CFS!  Hurray!!

After years of feeling ignored, the large population of kids, teens, and young adults with ME/CFS will finally get some attention from this important committee that is chartered by the US Department of Health and Human Services.  Here is a quick run-down of the relevant agenda items for June 13:
  • Presentation by Dr. Peter Rowe, renowned pediatric CFS/OI expert
  • Presentation by Gail Houle, PhD, Associate Division Director of Special Education Programs, Department of Education
  • Panel Discussion, including Dr, Rowe and Dr. Houle, plus:
    • Faith Newton, mother of a 16-year old son with ME/CFS and an education expert.
    • Matthew, 19-year old with severe ME/CFS, a patient of Dr. Rowe, who continues to be severely disabled, despite trying all kinds of treatments.
    • Tina, 16-year old with ME/CFS, also a patient of Dr. Rowe, for whom treatments have helped tremendously; her OI was so severe at one point that she was passing out multiple times a day; she is now able to do school work for several hours a day, attended her prom recently, and is even running (yes, running!).
I am pleased to say that the 3 panel members representing young patients are all good friends of mine, all part of our local group of families affected by early-onset CFS.  I am so excited that they will have such an active part in this meeting, telling the CFSAC member all about what life is like for kids and teens afflicted by ME/CFS.  I was asked to be on the panel but will not be able to attend the meeting; I am thrilled by the final line-up. 

In addition, public testimony will be heard at 3:30 pm on June 13 and 11:30 am on June 14.

So, this should be a good one!  If you are unable to attend the CFSAC meeting in person, be sure to tune into the live video stream on June 13-14,  Yes, due to popular demand, CFSAC has reinstated the live video feed!  I think you will be able to access the live video at this link on the day of the meeting.

2 comments:

  1. Faith Newton2:21 PM

    I am a parent representative at the CFSAC Meeting this Wednesday, June 13th. I would love to know what 1 thing you would like the committee members to know. If you could make 1 recommendation what would it be? Thank you!

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  2. Hi Sue ~

    Hope you and your family are doing well. Thanks for the up-to-date info!

    Will you do me a huge favor? Will you comment on my latest blog post about what my so-called friend said to me about my having CFS? I would greatly appreciate the support, as she follows my blog.

    If anyone else is reading this comment and feels inpspired to help me, please know you are welcome to!

    Judy



    http://judithactonayala.blogspot.com/2012/06/omg-i-cant-believe-horrid-things-my.html

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