"a killing field for hypotheses" (madman101) wrote,
"a killing field for hypotheses"

Disdain for CFS / ME

Pain and Prejudice

I couldn’t turn over in bed...

Though I felt like I was suffering in my own private hell, more than a million Americans 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.

Hidden in these numbers is astonishing suffering. Patients with chronic fatigue syndrome (CFS) have the lowest quality of life and greatest disability of any disease tested, including lung disease, rheumatoid arthritis and heart disease. A quarter of us are homebound. In 2014, a quarter of Canadian patients had less than $20,000 a year in income, and more than a quarter lived with food insecurity, the highest rate of any disease. Because CFS can disable people for decades, its economic impact is huge: In the U.S., it accounts for between $18 billion and $24 billion per year in medical costs and lost wages.

But public health agencies have treated chronic fatigue syndrome as if it were the jest the name suggests. The Centers for Disease Control and Prevention (CDC) chose and promulgated that insulting name even though internationally the disease is more commonly known as “myalgic encephalomyelitis” or ME (literally meaning “muscle pain and inflammation of the brain and spinal cord”). The CDC then worsened its mistake by using absurdly broad definitions of the disease that include many people who are chronically tired but don’t have CFS at all, scrambling the research and confusing doctors. In particular, their definitions don’t require the hallmark symptom of the illness: Even slight exertion can exacerbate all the other symptoms of the disease. And medical schools rarely train doctors about ME/CFS at all, so few patients can get skillful medical care...

Also, for years the National Institutes of Health (NIH) invested only $6 million a year in research on ME/CFS—six bucks a patient. To be comparable to other diseases with a similar impact, that budget would need to be $150 million or more. In 2000, the disease was moved to the Office of Research on Women’s Health, even though some 200,000 men have the disease, and the funding dropped immediately and steadily. Contempt for the illness at the CDC was so great that even when the U.S. Congress set aside money for ME/CFS research in the 1980s, the agency used that money for other purposes—and then lied to Congress to cover it up.

Furthermore, much of the pitiful bit of research money has gone to scientifically flawed studies claiming that the disease was substantially psychological...

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Tags: all * mob psychology, blame the victim, books - 'thirty years of disdain', books - cfs / me, culling the herd, dimmock - mary, health - cfs - 1, health - cfs - books

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