Make your voice heard
Recently, I met Association President Kim Kenney and CFIDS lobbyist Tom Sheridan, who came to my state to talk to patients about Congressional activism. The meeting made me realize the importance of every CFIDS patient seeking out Congressional support.

Many patients would rather persuade a tortoise to run a marathon than nudge the government into action. As Kim and Tom noted, CFIDS patients are deprived symptomatically of one of the main qualities needed for lobbying — persistence. But every champion in government can make an enormous difference in CFIDS recognition and funding. Every dollar of government funding represents not only new research, but cultural validation that could produce a snowball effect on reinvigorated private funders and CFIDS researchers.

Individual patients can incite change by being unflinchingly honest with legislators about the effects of CFIDS on their lives. Anyone who has viewed The Names Project’s AIDS quilt knows that a million statistics cannot match the power of one human story. At the Project’s home office, anyone can walk in and sew a square about a single life. As CFIDS patients, fractured at the most basic level of community, many of us deem our capacity for political effort to be insubstantial, but we too have the power to do a lot with whatever bit of individual “thread” we possess. Without our stories, there is no comprehension. Without comprehension, there cannot be a just response.

We must fight for our own visibility and make sure our stories are heard.
Peggy Munson, Providence, R.I.
Munson is editor of “Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome” (Haworth Press).

“Valuable” lessons
Thanks very much for publishing, “I am valuable: Finding ways to cope with severe CFIDS” (Fall 2001). I deal with many of the same feelings and physical challenges as the author. It is comforting to hear that I am not alone. Her courage is an inspiration to keep going on.

Also, as a believer in God, it is extremely comforting to know that someone cares what we are going through — someone who can always be called upon to give peace and comfort in the midst of chaos.
A PWC in California

CFIDS info on the way
The fall 2001 issue of The CFIDS Chronicle contains a letter lamenting the lack of current information on the Web site of the Centers for Disease Control and Prevention.

The New Jersey Chronic Fatigue Syndrome Association lobbied its state legislature for an appropriation to cover the cost of production and distribution of a Physicians’ Manual for the Diagnosis and Treatment of Chronic Fatigue. The panel began its work last fall; the manual is now being reviewed by an independent reviewer and the New Jersey Department of Health, and, hopefully, will be distributed this spring.

The intent of the manual is to make family physicians (and every physician within the State of New Jersey) aware of CFS and the principles by which CFS patients should be treated. Secondary goals would be for the manual to serve as a current source of information for CFS patients and to serve as a model for other states to follow. Perhaps arrangements can be made to reprint the manual in some form for broader distribution.
Kenneth J. Friedman, PhD, Associate Professor, University of Medicine and Dentistry of New Jersey, Newark, N.J.