CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of K. Kimberly McCleary

March 2007

One of my favorite days of the year is Lobby Day. This might seem strange, since I didn’t care about politics when I was a teen or even as a young adult. I never got involved in campus rallies or voter registration drives. I didn’t tune in to Sunday morning’s political pundits or pay attention to opinion polls. But 15 years ago, that all changed. Why? Because I experienced my first Lobby Day.

There were just three of us—Tom Sheridan, a paid lobbyist we’d recently hired at the strong urging of two wise benefactors, Roy Snoeyenbos, a man with CFS living in D.C. who wanted to build a stronger presence for CFS on Capitol Hill, and me. The three of us spent a little time in the morning reviewing what we’d each cover in the 15-20 minutes we’d have in each office, and Tom schooled us on how to handle staffers’ questions. It was my first crash course in lobbying, and I’ll admit to being intimidated when we arrived at the Russell Building, with its marble floors and long hallways spotted with state flags marking Senate offices. I hadn’t been to Capitol Hill since my ninth grade social studies trip to Washington, D.C.

By the end of the second meeting, I was hooked. Although, I was prepared to face the challenge of getting uninformed people to understand the serious and disabling nature of CFS, the doubt and skepticism I expected didn’t surface. The health staffers were aware of CFS and several had heard from constituents about it.

Roy told his story and I shared facts. Tom put our requests—all pertaining to a bill in the Senate that would direct the activities of the National Institutes of Health—into clear, concise language I only partially understood at the time, but that the staffers immediately recognized. We concluded with a restatement of our request—that four CFS-specific provisions be included in that bill—and a promise to follow up.

We did follow up with those offices, and Tom also contacted other key members of the committees responsible for shepherding that bill through Congress. When President Clinton took office in January 1993, the first bill he signed was the NIH Reauthorization Act. It included the four CFS-specific provisions, marking the first formal legislative recognition of CFS. That bill remained the legal authority for NIH for 13 years, until last December when a new law was passed in the very, very last hours of the 109th Congress.

I recognize the importance of demonstrating to members of Congress, in real and personal terms, how CFS affects their constituents and the country. Lobby Day is our primary means of doing that. But over the years, what’s become as important to me is the effect that Lobby Day has on those who participate in the annual event.
 
I get to watch as participants from all walks of life go through the training and begin to feel comfortable with both the information and the process involved. I see them become more confident as Tom guides them through the talking points we’ll all use the next day in our meetings. Excitement builds as the schedules are distributed and groups focus on the legislators they’ll see the next day.

By the time we meet again as a group for a celebratory reception at the end of the lobbying experience, the group is exhausted, but empowered and buoyant. The feelings of being taken seriously, of being part of something larger, of directly engaging in the democratic process (often for the first time) generate the same “high” that I remember feeling first in September 1992.

For many participants with CFS, they know a “crash” may follow this major energy expenditure. For many, the actual expense of attending Lobby Day creates a financial crash of its own. But there’s a reason that each year 40-50% of attendees are Lobby Day alumni, returning for a second, fifth or tenth time. That high—and the unique camaraderie that exists among participants—is a powerful draw. And then there’s the opportunity to influence legislation moving through Congress. That’s a powerful draw, too.
 
Whatever might draw you, we invite you to take part in this year’s Lobby Day. With heightened visibility created by the national awareness campaign, exciting momentum in CFS research and lots of newcomers and leaders in Congress to educate, we anticipate this will be our most powerful event yet. We hope you’ll be part of it—on the Hill with the group, or from your home or office through the Virtual Lobby Day we’ll create using our online Grassroots Action Center.

To learn more about attending Lobby Day visit http://www.cfids.org/advocacy/lobby-day.asp. 

Editor's Note:
Can’t come to D.C.? If you’ve got online access, you can add your voice to the message we deliver on Capitol Hill. In the April edition of the CFIDSLink, we’ll tell you how to take part in Virtual Lobby Day!