CFS Advocates Turn Out for Town Hall Meetings

In the last edition of CFIDSLink we shared how August is a great time to get attention from members of Congress while they’re back in their states and districts holding Town Hall meetings. After reading our Town Hall pointers and downloading the CFS information we provided, many of you turned out for meetings and raised CFS as a health priority.

As a result, many Congress members across the country now have a real face and story from their state or district to connect with CFS. And several of you were able to get commitments of support from members of Congress with whom you met.

Here’s what a few of you had to say about the experience:

“My mom and I went to a Town Hall meeting held by our representative, Adam Smith last night here near Seattle. I went prepared with the information provided on the CFIDS Association website and my question thought out. It was an interesting experience and well worth the fatigue and pain. . . .

“More people than usual showed up and the room was filled to the brim [and not everyone’s questions were able to be addressed.] . . . We weaved our way to the front, and as Mr. Smith was about to exit, my mom snuck in there and grabbed his arm. She said, ‘I'm sorry to grab you, but I’m a concerned mother. My daughter is ill, and she’s sat here the whole time and she’s sore. She’d like to ask you a question.’ He turned his attention to me right away. . . I simply told him ‘I have chronic fatigue syndrome, and I was hoping that you would be willing to send a letter to ask the National Institutes of Health to make CFS a higher priority (I showed him the letter to Dr. Zerhouni from June 26th with the signatures from 12 senators and 36 representatives)’

“Right away he said, ‘Absolutely. I can do that.’ . . . So it appears to be a success. Here's hoping.”
- Amanda Rinkel, WA

“I went to a ‘meet and greet’ event with Allyson Schwartz, my Pennsylvania representative, and waited for a long time while others aired their views. . . Finally, though, [I met with her and] she said she would sign [the letter to NIH]! . . . I feel good! We'd been sending email after email, and we never got any action from her overworked staffer.”
- Lela Betts, PA

“Mike Honda, a representative in California, held a Town Hall meeting last night, and I was the second person to get the mic and ask my question. I was a little scared because this was my first time, and the audience was quite cantankerous after the congressman had just finished talking about Iraq. I had one minute to ask my question, and I was thankful I had [my request] scripted out ahead of time so I could just read it. . . .

“I was stunned when the audience broke into applause when I finished! . . . I feel like I brought awareness to the hundreds of people sitting in the auditorium. When I walked out to leave, I had three different people come up to me to share their story or congratulate me. It was such an empowering experience, I can’t wait to do it again.”
- Carolyn Field, CA

The Association congratulates all of you who took advantage of local opportunities to wield your power as citizens and to hold your members of Congress accountable to your needs and the needs of everyone with CFS!

To be notified of Town Hall meetings and events in your area in the coming months, sign up now for the CFIDS Association’s Grassroots Action Center (GAC) listserv. You’ll receive email Action Alerts when a meeting is happening in your area or an opportunity arises for you to flex your advocacy power online. Visit http://capwiz.com/cfids/mlm/signup/.

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The CFIDS Association fights for the rights of people with CFS and their families by advocating for increased government funding of research and improved public policy. Your donations make this work possible.

If you care about making CFS a national priority with lawmakers and health officials, donate now to support the CFIDS Association’s advocacy, research and education efforts.