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.
Despite this, there’s still no consensus about the cause of ME, although a viral origin has been suspected. There is neither an FDA-approved treatment nor cure.
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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Part of the problem with understanding ME has been that early brain research, and even some research through the 1990s, failed to examine how the brain functioned as a whole, experts said. “The brain research from the 1800s was very focused on saying this piece of the brain does this function,” says Leonard Jason, director of DePaul University’s Center for Community Research. “But the brain actually comes together to take on tasks. The brain can change, but there’s a possibility that the brain can become dysregulated. If so, it can become very hard for it to function.”
He and his team study communication between neurons and how the brain functions as a system. Dysregulation occurs when different parts of the brain don’t communicate correctly, leading to functional impairment, he says. In the case of ME patients, our brains are far less efficient than they should be, perennially stuck in low gear.
To glimpse what your brain is doing, you could get an EEG, which is a readout of the electrical activity at the surface of the brain. But from this information alone you can only discern major disruptions like seizures. To detect the subtleties of what’s going on inside the brains of ME patients, you need to go deeper.
Jason and fellow DePaul researchers Marcie Zinn and Mark Zinn are conducting neuroimaging studies by taking the raw EEG data—the squiggles on a page you’d see at the doctor’s office—and feeding them into a program that applies complex math using a method called exact low-resolution electromagnetic tomography (eLORETA). The resulting quantitative EEG (or qEEG) traces brain activity down to the source, on a millisecond timescale.
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.
Although it only weighs three pounds, the brain consumes 40 to 60 percent of the body’s total blood glucose, Marcie Zinn says. To do everything it needs to do as efficiently as possible, the brain organizes its neurons into smaller clusters, relying on fewer long-distance connections between groups of clusters—because these connections require more energy.
In ME, the balance between local clustering and global processing is thrown off, resulting in significantly fewer neurons being recruited to perform a function than normal, and the neurons that are engaged aren’t given enough time to do their jobs, the DePaul research has found. ME patients’ brains also have reduced alpha-wave activity—associated with being alert but relaxed—and more delta waves, which typically occur during deep sleep. If your frontal cortex is hanging out in delta, this suggests your arousal level will be lower and higher cortical functions will be suppressed, which the Zinns noted in a 2016 study in the journal NeuroRegulation. It feels like I’m awake, but my brain hit the snooze button.
When I sat down to participate in one of these studies after suffering from the worst of this disease nearly three years ago, I wasn’t sure what to expect as I filled out a lengthy screening questionnaire to confirm whether I fit the criteria for participating. I’d long since come up against the limits of standard medical testing: no matter how bad I felt, all my blood work always came back frustratingly labeled normal. There’s no single, easy blood test available that can make an ME diagnosis.
Marcie Zinn says modern medicine still has too many blind spots, even for major medical problems. “Anything in the ‘black box’ called the skull is very, very hard or impossible to diagnose,” she says.
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 I sat in an office at DePaul’s Lincoln Park campus, 19 electrodes were fixed to my head for five minutes while I had my eyes closed, then five minutes with them open. That produced a 3-D model of my brain bathed in blue, representing abnormally low activity. At last I had my hard evidence that there is something wrong with me.
I wept with relief.
The DePaul group is charging ahead with its qEEG studies without grant support. “If you look at NIH, [ME] is not funded at the level it probably needs to be,” says Jason. Historically, research on ME has been underfunded. In 2016 ME research received just $7.8 million from the National Institutes of Health, hardly more than hay fever. That’s less than NIH gave to studies of multiple sclerosis ($97.1 million), Parkinson’s ($161.1 million), and HIV/AIDS ($3 billion). ME funding increased in 2017 but it still trails many other diseases.
The researchers’ hope is that their study will help doctors make and confirm ME diagnoses as well as monitor the disease’s progression. “We want to use this knowledge to help people with all neurological disorders regain their cognitive function,” says Marcie Zinn, who said that one potential treatment for ME is learning to regulate your brainwaves through neurofeedback, which also shows promise in treating other problems like traumatic brain injury.
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.
“Chicago will have two data sets on relatively young people, and that’s been totally understudied. Almost all the research is on adults,” says Jason. “No one is doing this in the world.”
To determine the youth prevalence rate, his team called more than 5,000 households in the greater Chicago area. Those with ME-like symptoms had medical examinations at Lurie Children’s Hospital in Streeterville. The collaborators, including Northwestern’s Dr. Ben Katz, a professor of pediatrics, will use blood samples to continue looking for biomarkers to help differentiate between the ME group and healthy control subjects.
The center is also wrapping up a prospective longitudinal research project that followed 4,000 Northwestern University students, tracking those who got mononucleosis. Characterized by flulike symptoms, that disease is caused by the Epstein-Barr virus, a possible risk factor for ME. Katz oversaw the collection of blood samples from the entire cohort when they were healthy. Further samples were taken from those who came down with mono, with additional samples taken six and 12 months later. This could help researchers find clues as to why some infected students go on to develop ME while others fully recover, and whether there is any correlation between the diseases.
These studies rely on samples from a more socially and
demographically diverse group of people than was used in much prior research, which was often based on patients who could afford to go to clinics and enroll in studies, Jason says. While there had been outbreaks in recorded cases of ME since the 1930s, the surge of cases in the United States in the 80s was dubbed the “yuppie flu”—and something that predominantly plagued “overachieving” white women. This was partially due to the fact that the people who suddenly became the face of the disease were those who had the means to continue going from doctor to doctor searching for answers. While 75 percent of those diagnosed with ME are women, a 1999 study Jason published in Archives of Internal Medicine showed it is actually even more common in minority groups and those with lower socioeconomic status.
Jason hopes these projects will bust another common myth: the belief that kids with ME symptoms are just faking them to skip school and have nothing actually wrong with them. A UK study found that ME is the biggest cause of long-term health-related school absence.
ME has interrupted the studies of Lizzie Mooney, 12, of west suburban Riverside, who has been homebound with ME for more than three years. When able, she works on English and math with a private tutor, but the rest of her studies
have stopped.
“These kids are fighting for their health. It’s not just emotional drama,” says her mother, Amy Mooney, who said she’s often had to convince school personnel that her daughter wasn’t just trying to avoid going to class. “You always have to explain, just to be heard, that your child is not well. And that’s the frustrating piece that I don’t think any other illness has to go through.”
This Saturday, May 12, Mooney is hosting a “visibility action” event, part of a global campaign for parity in ME medical research and education. Called Millions Missing—there are an estimated 20 million people worldwide with ME—it will feature talks by the DePaul researchers and patient testimony. There will be dozens of pairs of shoes, representing people with ME who are simply too sick to attend.
“They are with us in spirit,” says Mooney. “These are the shoes they wore when they lived an active life. v