Monday, April 4, 2011

I have received more gratitude and praise than from anything else I have written in five decades in journalism

By Llewellyn King, Published April 4, 2011:

In 2010, I made more friends than in all of my life. They are scattered across the United States and around the world. But for their sake, I wish they had never heard of me.

Sadly, my new friends know me only because I have taken up their cause. I have written and broadcast about their plight, and they have responded by pouring out their hearts to me.

For very minor service, I have received more gratitude, more praise and more life stories than from anything I have written or broadcast in five decades in journalism.

My sad, suffering new friends are victims of a grossly misnamed disease: chronic fatigue syndrome (CFS). It was once known more robustly as myalgic encephalomyelitis (ME), which at least suggests seriousness even if it isn't quite accurate. Myalgic describes pain in the joints and encephalomyelitis, inflammation in the brain and spinal cord. CFS has no known cure, and varies in intensity during the sufferer's lifetime.

In 1988, the Centers for Disease Control named the disease chronic fatigue syndrome after an outbreak in 1985 at the Incline Village resort on Lake Tahoe, Nev.
As far back as the 18th century there were recorded outbreaks of the disease, which was given various given names. In 1955, there was a major outbreak at the Royal Free Hospital in London.
The 300-case cluster in Nevada is generally recognized to be the largest in the United States. The second-largest cluster occurred in Lyndonville, NY, a northwestern hamlet where 216 cases were confirmed in a population of fewer than 1,000, also in l985.
A Lyndonville physician, David Bell, is regarded as one of the true experts on CFS, as well as one of the most dispassionate in the controversies that swirl around the disease. Bell has resisted pressure from both the medical establishment and patients' groups while retaining their respect.

As I see it, there are four controversies that plague discussion, research and therapies:

Is it a psychological disease with severe physical manifestations (a diagnosis favored by the British medical establishment)?

Is it caused by the new retrovirus XMRV (first spotted in prostate cancers) as some researchers believe, and nearly all the 1 million patients in the United States pray will lead to a cure?

Some charge there is a conspiracy in the medical establishment to downplay CFS out of guilt over past indifference, or pressure from the psychiatric practitioners who are reluctant to surrender jurisdiction.

Others fear a threat to the general population — clusters confirm CFS is contagious. But the pathway of the pathogen (air, blood, sexual intercourse, surfaces, food) or how great the risk is unknown. Read more>>

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