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?


       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.


                 But recent research coming out of Chicago could help explain one of ME’s most destructive symptoms: the cognitive impairments that leave patients lost in a “brain fog” of slowed comprehension and short-term memory loss.

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       While researchers have made inroads using this technology to study other neurological disorders like Alzheimer’s, the DePaul group is the only one in the world using it to evaluate the association between how neural networks communicate and the cognitive symptoms of ME patients.



                 Compounding the diagnostic problem further, only one-third of medical schools in the U.S. even teach their students about ME, the DePaul researchers said. Doctors can’t know how to test for something they don’t understand, and this lack of understanding can also hurt patients. Starting in 1970, ME was often misconstrued as having a psychological origin rather than a physiological basis, the National Academy of Medicine has noted. British psychiatrists even suggested ME was actually just “mass hysteria” because most patients were women. This thinking eventually extended to researchers at the National Institutes of Health and the CDC, according to journalist Hillary Johnson in her book Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. The idea that the illness was psychological led to treatments focusing on exercise and changing how one thinks about the disease—which, ineffective at best, are more often harmful for ME patients. It wasn’t until 2017 that the CDC (mostly) removed recommendations for these therapies from its ME web page.



                 As much as there is still to learn about ME in adults, there has been even less research involving children and adolescents. The Center for Community Research is currently finishing data collection for two NIH-funded studies on the prevalence and predictors of the illness in young people.

“Visibility action,” Sat 5/12, 11:30 AM, The Paul and Gabriella Rosenbaum Garden, 140 E. Oak, bit.ly/MillionsMissingChicago”..  F