Sick women are remaining undiagnosed and untreated, for a tangle of reasons with sexism at the core.
the complaint of someone too lazy to keep up. The words stung my lips with insult: “chronic fatigue syndrome.”shared my fate. Worldwide, the number is estimated at between 17 and 30 million. Though the disease has been characterized as the “yuppie flu,” it is more common in poor people. It occurs in all racial groups and ages but most of us are women—around 80 percent.
the complaint of someone too lazy to keep up. The words stung my lips with insult: ‘chronic fatigue syndrome.’Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand Furthermore, much of the pitiful bit of research money has gone to scientifically flawed studies claiming that the disease was substantially psychological.and ballyhooed in the media worldwide: the $8 million British PACE trial, which claimed that psychotherapy and exercise could help or even cure CFS.
The stigma began to develop not long after the CDC started investigating a mysterious and terrifying illness that swept through the Lake Tahoe area in the mid-1980s. Along with staggering, crushing fatigue, the patients experienced a bizarre multitude of extreme symptoms: dizziness, rashes, gut problems, hair loss, sensitivity to light, racing hearts, blurred vision, confusion, seizures. Some were paralyzed or unable to speak.
Around this time, unusual patients began appearing in the office of a young immunologist who specialized in AIDS cases, Dr. Nancy Klimas. They didn’t have HIV, but they were unimaginably exhausted. They were convinced something was wrong with their immune systems. Tests showed such a consistent set of immune abnormalities that Klimas became convinced they were suffering from some unidentified illness.
Klimas also studies the better-funded Gulf War Illness, which affects veterans in ways that are symptomatically indistinguishable from ME/CFS. “I have to say that there’s a gender thing,” she said. “Three hundred thousand people, mostly men, are as sick as 1 million people, mostly women. And they have 10 times the research budget. What’s that about?”
When health agencies for years ignored calls for a national registry of patients for research—a foundational need for any illness—SMCI stepped into the gap and started one. And after Congress zeroed out the CDC’s research budget for ME/CFS each of the past several years, SMCI, working with other advocates, convinced it to restore the funding.
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