What I want for Christmas.....

Subject: [WECAN] What I want for Christmas ...

Date: Tue, Dec 16, 97 5:54 PM

My name is Mary Schweitzer. I have chronic fatigue syndrome. It has been three years since I was last able to teach, publish, ski, hike, walk on the beach, drive a car, bake Christmas goodies, or join my husband and children in family activities.

What do I want for Christmas this year? Respect. I am not a liar, I am not a hypochondriac, and I am not a shirker.

Twice as many Americans have chronic fatigue syndrome as have multiple sclerosis. Congress allocated only $13 million this year to the disease -- about the same as they gave to study funny-looking fish in the Potomac River. Starved for funds, research into the causes of the severe physical abnormalities in this disease creeps along slowly.

Temple researchers have shown that chronic fatigue syndrome victims are missing an important segment of RNA necessary for fighting viruses. This test remains unavailable to the public because of insufficient funding. A promising treatment has been held off the market for five years because of insufficient funds for testing: 80 desperate victims await the FDA's permission to join 20 others already paying $15,000-$25,000 out-of-pocket for six months of IV infusions.

The disease attacks all races and income groups equally, yet 90 percent of those diagnosed are white and well-off. HMOs and clinics refuse to treat the disease. HHS funds a special committee to coordinate activities on the disease; the NIH and NIAD publish diagnostic brochures, yet doctors receiving federal funds are free to insist they "don't believe in" chronic fatigue syndrome.

Diagnosis is nearly meaningless in the face of an intractible society that equates disability insurance with con artists. Years of payments into FICA and private insurance plans prove meaningless when faced with bureaucrats determined to find a loophole with which to deny your claim. At best, it takes one to four years to receive a penny from social security disability; private insurance companies with lawyers on retainer keep fighting until the claimant has no resources left with which to fight, and capitulates. Divorced housewives, students, those who left their jobs or agreed to work part-time before understanding how ill they were, face a future straight out of Dickens.

Rich or poor, the typical chronic fatigue syndrome victim will try to keep working until eventually they collapse, and those who collapse face a future of poverty no matter their original status in society. So why bother diagnosing those who are already poor?

What has happened to people in this country? Do we really think there are no invalids in our fantasy world? Or is America now closed to all except the vigorous and healthy?

What do we want for Christmas? Ignore the ridiculous name the CDC has given us, and learn about this disease. Quit mocking us; quit treating us as guilty until proven innocent. In the richest nation in the world, invalids and their families should not have to suffer so.

Mary Schweitzer, 16 December 1997