Friday, May 13, 2011
CFSAC Meeting May 11
So, yes, we did go to Washington, DC, on Wednesday along with about a dozen other families - lots of parents and teens there - as a part of the Speak Up About ME campaign. It was a very moving experience. Here's a picture of the teens that were there - all with ME/CFS. Many of our local group were there among them.
We were first to give our testimony at the start of the afternoon session, followed by many other parents and even a couple of brave teens who gave their own testimony. I cried through the whole hour! It was very moving, especially hearing the teens' own words. I highly recommend listening to the full hour - go to this NIH link, click on the video for May 11, and the public comment period starts at hour 4 and goes until hour 5 (you can also download it as an MP3).
If you're not up to listening to a full hour but would like to hear our 5-minute testimony, here it is:
Important note: my husband Ken was right there with me, sitting next to our youngest son, Craig, but they completely cut him out of the video! If you look carefully, you can spot his arm. I just wanted you to know he was there with us, one of only two dads.
After the public comment period, we all left to go visit our Congressional representatives to ask for more equitable distribution of research funds. We pointed out the huge disparity in the amount of research money devoted to ME/CFS compared to other, similar illnesses, especially given that ME/CFS affects far more people than the comparison illnesses. We also asked that they help to ensure that the CDC and NIH finally take action on the items they've promised for years, including establishing centers of excellence for research and patient care for ME/CFS. I don't know about everyone else's meetings, but ours went well, and the staffers we met with seemed truly interested and sympathetic. I think having the kids there really made an impact.
The best news of all? Our efforts are already beginning to pay off. At the end of the meeting, CFSAC discussed pediatric ME/CFS and talked about setting up a database to begin assessing how many kids and teens in the US have ME/CFS. They also agreed to set aside time in the next meeting to learn more about pediatric ME/CFS from expert speakers. Also, Dr. Leonard Jason says he's already working on a grant to study pediatric ME/CFS.
As a side benefit, I've gotten some great feedback from my family and friends. Every year for ME/CFS Awareness Day, I send out some sort of information to my family and friends, and usually I don't get much response. But this year, sharing the video of our testimony has resulted in an avalanche of support and questions! If nothing else, I've educated the people around me.
Craig was wiped out, but rebounded by 10 am yesterday, so he could go to school mid-day. Jamie and I are still crashed, but we feel it was worth it!