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!).
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.