Founder's Forum
A dialogue with Association members

February 4, 2000

Dear Members,
For me, the beginning of a new century brings hope. The CFIDS Association of America is still here, undaunted and better armed than ever to battle this devastating and complex illness, which keeps a tight grasp on roughly a million Americans.

We are building on a solid foundation of advances over the last 10 years, including increased and broader research, Social Security Administration recognition of CFIDS as a legitimate disability, greater and more credible media coverage, government accountability made possible by Congress and the CFS Coordinating Committee, and the dissemination of reliable and useful information in the Chronicle and elsewhere.

Despite our successes, we still have a long way to go. However, I am confident that the next decade will be a "decade of discovery" for CFIDS, both in terms of medical research and public awareness. The time is ripe for mainstreaming our illness. CFIDS needs to become as accepted and cared about as other less prevalent chronic disorders, such as multiple sclerosis or lupus. This is the only way ample financial and intellectual resources will be attracted and dedicated to mastering and ultimately defeating CFIDS.

Mainstreaming can have an immediate impact on our daily lives. If we can erase the stigma associated with CFIDS and replace it with understanding and concern, a higher percentage of persons with CFIDS will be diagnosed. We will also be treated more fairly in the workplace, the medical office, social settings and at home.

The recent coverage of the Centers for Disease Control's misdeeds ("CDC misled Congress on Spending, Records Show" [2/2/00]) on the front page of the Washington Post proves how mainstreaming produces compelling results. More than a million people read about the widespread pattern of abuses and financial mismanagement within the agency that resulted in crucial funds being diverted from CFS and other research programs. Suddenly our issue became even more of a public health concern, as the story broke when the nation was already focused on politics. It certainly shook up Capitol Hill.

Mainstream coverage brought about expanded legislative hearings that put CDC in the "hot seat," a call  for a more comprehensive General Accounting Office investigation of the agency and renewed interest in beginning criminal proceedings by the Department of Justice.

You can read more about the fallout on pages 8-10. The effects of having the public eye focused on our issue have been wide-reaching. This coverage is a direct result of The CFIDS Association holding CDC and NIH accountable, and it is giving us a way to keep bringing CFIDS back into the limelight.

The bottom line is that we have been victimized by discrimination and ignorance far too long. Main-streaming is a major goal, and we intend to do everything in our power to make it happen, from turning up the heat on government to educating physicians. The past injustices cannot be wiped out, but we can open a new chapter in the history of our illness by gaining the recognition and respect we deserve.

A new century means new opportunities. Opportunities for discovery. With your support, we will wake up the world.

Sincerely,

Looking to make a difference in 2000? Submit an article to the Chronicle , raise awareness by joining the CPR Team, or further the Association’s mission by making a contribution (see page 31).