For most patients, CFS is a one-way ticket to hell

By Llewellyn King, June 2, 2011:

Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.

Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?

None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.

The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.

The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.

Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.

The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.

Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.

They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.

For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.

According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.

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Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is lking@kingpublishing.com.