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.


  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!

  2. Anonymous10:32 AM

    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!