Summer Is Prime Time To Be Heard:

Connecting Locally with Your Member of Congress

Congress takes its annual recess in August and many U.S. Senators and Representatives will spend time being more visible in their home communities this month. With health care reform, the economy and military operations in Afghanistan and Iraq on constituents’ minds, they will be hosting town hall meetings, listening sessions and other forums to gage public opinion. Here are some pointers about ways you can identify and use these opportunities to bring CFS to lawmakers’ attention.

Town Hall Meeting/Public Session

In a congressional town hall meeting, members of Congress invite their constituents to gather together to discuss pressing issues. These events are advertised in the local paper, in newsletters that your member of Congress sends to all postal patrons in the mail and via postcards sent to postal patrons before the meetings. The schedule is also likely to be posted on their website (see the list of online resources at the end of this article). You can also call the Congress member’s office, or sign up to receive an electronic newsletter (if one is offered on his or her website) that will keep you updated on public appearances.

At the town hall meeting, the member of Congress will typically make opening remarks, then take questions from the audience. Sometimes they restrict discussion to a single topic (like healthcare or bringing jobs back home). Any constituent can raise his/her hand and ask questions of the member of Congress.

Things to Consider:

• Your question should be very brief—not a speech. You should speak for no more than one-and-a-half or two minutes.
• You should be very respectful or your question will not be taken seriously.
• You should immediately identify yourself as a constituent and as a person living with CFS (or a family member/friend of a person living with CFS).
• You should very briefly explain how this disease has impacted your life. This portion of your statement should be less than a minute.
• If the topic is healthcare reform, consider asking a question such as this: “You’ve been hearing from the American Medical Association and other organizations the importance of health care reform not putting the government between patients and their doctors when it comes to making decisions about care. I have chronic fatigue syndrome and the research simply hasn’t been done to know what kinds of treatments are most effective. I ask you to make sure that the reform bill not limit my options for care by imposing a ‘cookie-cutter’ approach to medical care for conditions that aren’t yet well understood, like CFS.”
• Share your experience with us by e-mail to cfidsadvocacy@cfids.org. Please let us know if follow-up is required and what information needs to be provided to whom.

Face-to-Face Meeting with Member or Staff Member
Most members of Congress have multiple offices around the state (for U.S. senators) or district (for U.S. representatives), depending on the size of the community they represent, both in terms of geography and population. You can generally locate the local offices on your members’ websites or in the “government” pages of your local phone book. Links to helpful websites are provided below.

Call the local office and ask for 10 minutes to come in and talk to the member of Congress. Be persistent and flexible in your scheduling. If you’re unable to meet directly with the member (be persistent in asking!), agree to meet with a staff member—preferably one who deals with health issues. Consider taking a friend or family member with you who can share their perspective about how CFS has affected your life (and help you get to the meeting and follow up after it). If you’re a member of a local support group, you might consider making this a group effort. (Caution: Don’t make this a bigger project than it needs to be! Sometimes corralling a whole group can slow things down, rather than expedite the process.)

Things to Consider:

• Follow the same format as for the town hall meeting (above), with the understanding that you will have about 10 minutes to make your case.
• You can give more detail on how CFS has impacted your life or that of a loved one.
• Give the member of Congress the one-page fact sheet prepared by the CFIDS Association that provides an overview of chronic fatigue syndrome (see the link in the online resources listed below).
• If the conversation comes around to health care reform, consider asking a question such as this: “You’ve been hearing from the American Medical Association and other organizations the importance of health care reform not putting the government between patients and their doctors when it comes to making decisions about care. I have chronic fatigue syndrome and the research simply hasn’t been done to know what kinds of treatments are most effective. I ask you to make sure that the reform bill not limit my options for care by imposing a ‘cookie-cutter’ approach to medical care for conditions that aren’t yet well understood, like CFS.” You might also emphasize the need for continued support of federally funded research into objective diagnostics and effective treatments.
• Share your experience with us by e-mail at cfidsadvocacy@cfids.org. Please let us know if follow-up is required and what information needs to be provided to whom.

Stories from Past Town Hall Meeting Attendees:

“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 . 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.

“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 e-mail after e-mail, 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

Online Resources

Here are some useful links to help you connect with your members of Congress:

One-page fact sheet about CFS:
http://www.cfids.org/cfidslink/2008/ldfs0708.pdf

Two-page Research!America fact sheet about CFS: http://www.cfids.org/advocacy/researchamerica.pdf

U.S. House of Representatives website: www.house.gov
(You can enter your zip code and connect to your member’s web site)

U.S. Senate website: www.senate.gov
(You can find your state’s two U.S. Senators’ web sites)

Grassroots Action Center: http://capwiz.com/cfids/home/

Sign up to receive Grassroots Action Center Alerts:
http://capwiz.com/cfids/mlm/signup/

Advocacy Archives: http://www.cfids.org/advocacy/advocacy-archives.asp

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