Note: This column is for information purposes only and is not intended as a substitute for professional medical advice.
Q: A New York City health commissioner reported that two-thirds of New Yorkers who got the West Nile virus in 1999 still complain of fatigue, difficulty walking, muscle weakness and memory loss, and more than one-third are depressed. She said, "Many people don't realize that this is not an infection that you always get over." Why are people who had West Nile Virus believed, while doctors still don't "believe" in PPS?
A: I don't know what causes doctors not to "believe" in post-polio sequelae. Young doctors may know too little about polio to even be interested in PPS. Older doctors, especially those who remember the polio epidemics, want to believe that polio is a thing of the past. All doctors may be so squeezed by HMOs that they turn their backs on polio survivors' need for more than the eight-minute average visit allowed by insurance companies. And no doctor will say he has time to read the 20 years of published research on PPS.
In spite of these similarities and the fact that PPS was first reported 127 years ago--versus three years ago for the first U.S. WNV case--the question remains: Why are fatigue and muscle weakness still not "believed" when they occur in polio survivors?
And there is another question: Will the 20 percent of West Nile patients who have mild flu symptoms and may never have been diagnosed with WNV go the way of the polio survivor? Will WNV patients 30 years from now join polio survivors, those with chronic fatigue syndrome, fibromyalgia--plus millions more with cerebral palsy, spina bifida, Guillain-Barre Syndrome and spinal cord injury who report fatigue and muscle weakness in midlife--and be told that they are malingering or that their symptoms are "all in their heads?"
This year truly has been the "Year of the Polio Survivor." The U.S. Social Security regulation for "The Late Effects of Poliomyelitis" was expanded and SSA personnel educated to stop inappropriate denials of benefits; European health ministers discussed providing information about PPS, treatment and disability benefits to polio survivors; Mia Farrow's post-polio letter has been translated into five languages with nearly one million copies distributed in 27 countries; Rotary International may create an official program to educate doctors and polio survivors about PPS in the United States and throughout the world. Yet, a week doesn't go by without a patient telling me that their doctor doesn't "believe" in PPS.
Let us together make a New Year's resolution to make 2003 the "Year of Caring for Polio Survivors," continuing PPS education and lobbying for treatment, not only for polio survivors but for everyone with the late effects of a chronic disability, including West Nile virus patients 30 years hence.