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The Hidden ME-Too

The hidden ME too: 100,000 people in Illinois could suffer from debilitating disease

Chicago researchers are searching for a cure for ME,
which is more widespread and serious than previously thought.
by Megan Doherty

What if, on a daily basis, you had to choose between taking a shower or doing laundry? Making dinner or taking out the trash? Reading a book or catching up on e-mail?

You need to pick. You can’t do both today.

If you do, you’ll suffer for it.

These are the kinds of calculated trade-offs that people suffering from myalgic encephalomyelitis (ME) are forced to make. Our lives exist on the razor’s edge between functioning and crashing.
I say “our” because this is now my life, too. With a relatively mild case, I can walk and talk—except for those times I can’t.

ME is a debilitating neuroimmune disease recognized by the World Health Organization since 1969. Yet it was given what many advocates say is a misleading set of diagnostic criteria and a trivializing name, chronic fatigue syndrome, by researchers at the U.S. Centers for Disease Control 30 years ago. This moniker doesn’t do justice to what patients suffer, which includes an array of symptoms that can go far beyond unrelenting fatigue. From neurological to cardiovascular, ME affects nearly every system in the body—especially if you do too much. That crash after exertion of any form makes everything worse.

And by “worse,” I mean near-paralytic muscle weakness and the feeling you’ve been poisoned.

Not surprisingly, a Danish study of the quality of life experienced by those with a range of diseases found that people with ME have the lowest scores of those suffering from diseases, including multiple sclerosis, chronic renal failure, stroke, lung cancer, diabetes, and heart failure. A quarter of ME patients are homebound or completely bedridden, and as many as nine in ten lose their jobs because of the illness, according to the Solve ME/CFS Initiative, an advocacy group. The economic cost in lost productivity and health care expenses is estimated to be in the billions, according to a report by the National Academy of Medicine. That report also estimates that there are up to 2.5 million people with ME in the U.S., with up to 91 percent of cases undiagnosed. That would amount to nearly 100,000 people in Illinois, and would make the disease more common than Parkinson’s, multiple sclerosis, or HIV/AIDS.

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