International CFIDS Awareness Day:  Lobby Days are here again!
By Kris Hopkins

This is always an exciting time of year for the CFIDS community. Information packets are being prepared, members of local and national media are being contacted and letter writing campaigns are being planned. Why? May 12th, CFIDS Awareness Day, is just around the corner! Marking its seventh year, International CFIDS Awareness Day is just that--a day to increase awareness about an illness which affects over 500,000 people in the United States.

How it began 
The first CFIDS Awareness Day was held on May 12, 1993. This date was chosen because of its significance as Florence Nightingale’s birthday. Nightingale was bedridden with a disease resembling CFIDS when she founded the International Red Cross. Organized by Tom Hennessy, president of RESCIND, Awareness Day events were held worldwide in an effort to focus attention for a single day on CFIDS and those suffering from it, thereby increasing the impact of the efforts of patients and CFIDS organizations to educate the general public, members of legislative bodies, the media and health-care professionals. Letters were written; phone calls and visits were made to local and national representatives. The message was beginning to be heard and understood--CFIDS was a debilitating illness which had become a serious national public health and economic issue.
 
May 12, 1994, marked the first-ever Lobby Day for CFIDS advocates in Washington, D.C. A 28-member group led by Kim Kenney, Executive Director of The CFIDS Association of America, and Tom Sheridan, a professional lobbyist hired by the Association, visited with key legislative staff members from 13 Congressional offices. These dedicated advocates spoke about the Association’s specific appropriations requests for Fiscal Year 1995 and more importantly about how this illness affected their lives. They put a face with the hundreds of letters, faxes and phone calls that members of Congress were receiving about this illness.

The beat goes on 
Each year the number of CFIDS Awareness Day activities increases as more and more support groups and organizations team together. In 1998, the number of CFIDS advocates traveling to Washington to participate in the Association’s Lobby Days was almost three times the number from 1994--which is remarkable considering participants must pay their own expenses and most are thrown into a relapse afterwards because of the challenging schedule. All agree that it is worth it, however, and are eager to advocate again the following year. They understand they are helping to bring about change in the lives of people with CFIDS. As one Lobby Day participant stated. "I learned how very important it is that we all speak up and do our part, no matter how small."
 
Awareness Day activities by local support groups have ranged from organizing information displays at malls, libraries and bookstores to hosting nationally known CFIDS researchers and clinicians to speak with health-care professionals at local hospitals. Support groups have had state and city Proclamations recognizing May 12 as CFIDS Awareness Day, and the number of proclamations increases each year. Reporters and editors at local newspapers and radio and television stations are contacted early each year by patients in a effort to spark coverage of this story from the local angle.

What can you do? 
Whether or not you can join us in Washington, D.C., for Lobby Day 1999, you can play an active role in educating those who need to be educated about this illness. Send letters, faxes or E-mail messages to your members of Congress, contact members of the local media or send information to local physicians. The Association has a free information packet available to those who are interested in participating and /or organizing May 12th events. It includes sample letters to members of the media and members of Congress, information on requesting a CFIDS Awareness Day Proclamation and first-hand accounts of past Lobby Day advocates. You can find that information on our web site, request a packet by calling the Resource Line at 704/365-2343, or by writing to The CFIDS Association of America, Attn: May 12th, PO Box 220398, Charlotte, NC 28222-0398.
 
The Association is here to guide you, but your words speak louder than ours do. Make your voices heard today! 

Kris Hopkins is in her ninth year of service to the Assocation.  She is the operations manager and this year took on new responsibilities as Support Network Services Director.

Let us know what you do 
If you or your support group participates in an Awareness Day activity, let us know about it. Send a note and, if appropriate, a photograph.

Please note: Travel and lodging expenses are the responsibility of the participants.

If you're writing to Congress ... 

Can you help by writing letters to your members of Congress? Here are some suggestions:

• Write three letters (if you can): one to each of your Senators and one to your Representative. If you don’t know the names of your members of Congress, call your local voter registration office or League of Women Voters.
• Keep your letters short, preferably only one page, and be sure to write legibly. Include the following points: Who you are, where you live, why you are concerned about CFIDS, and, most importantly, a request for support of CFIDS-related provisions in the annual appropriations bills.
• Be factual and state how more federal spending on research could help you. But avoid emotional or philosophical arguments.
• Use the following addresses:
    Senators: The Honorable (first and last name), United States Senate, Washington, DC 20510. Dear Senator (last name):
    Representatives: The Honorable (first and last name), United States House of Representatives, Washington, DC 20515. Dear Representative (last name):
• Send copies of your letters to The CFIDS Association of America, if possible.