The CFS Advisory Committee to the Department of Health and Human Services (U.S.) met yesterday and today. I had requested a speaking slot, after speaking for the first time at the May meeting about the plight of kids and teens with ME/CFS. I was hoping to go in person but figured I could call in my testimony if I wasn't able to travel to DC. Unfortunately, I didn't get a speaking slot this time - they had too many people requesting time (which is a good problem to have - our invisible community is becoming more visible!). Then, we found out last week that my husband had to go out of town, so my going to DC became impossible anyway.
But I did turn in my testimony, and I think it will be included in the written copies handed out to CFSAC members. Our local parent group had agreed to focus our testimonies this time on the difficulty of getting appropriate educational support for kids and teens with ME/CFS. I have been working on a more detailed post about 504 plans and IEPs and hope to post that later this week. In the meantime, here is my (unheard) testimony: