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Researchers in Chicago conduct longitudinal study of 4,500 undergraduates
CHICAGO — Many college students fully recover from infectious mononucleosis (which is almost always caused by Epstein-Barr virus) within 1-6 weeks, but some go on to develop chronic fatigue syndrome, also called myalgic encephalomyelitis (ME/CFS). A longitudinal study from DePaul University and Northwestern University followed 4,501 college students to examine risk factors that may trigger longer illness. The research appears in the journal Clinical Infectious Diseases and was funded by the National Institute of Allergy and Infectious Diseases.
Previous retrospective studies found that risk factors for developing ME/CFS after catching mono included preexisting physical symptoms and the number of days spent in bed, according to co-principal investigators Leonard A. Jason, professor of psychology at DePaul University; and Dr. Ben Z. Katz, a professor of pediatrics at Northwestern University’s Feinberg School of Medicine and a pediatric infectious disease specialist at Ann & Robert H. Lurie Children’s Hospital of Chicago.
“We are the only study to collect comprehensive biological and behavioral data prior to illness onset, which for the first time allowed us to identify some of the predisposing circumstances or conditions that make certain individuals more likely to get ill due to mono and stay ill,” said Jason, director of the Center for Community Research at DePaul.
Of the 4,501 college students in the study, 238 or 5.3% developed mononucleosis; and 55 of those (23%) met criteria for ME/CFS six months later, 20 of whom (8%) met criteria for severe ME/CFS. Researchers found that those who developed ME/CFS had more physical symptoms and immune irregularities at baseline, but they did not start out with statistically significantly more psychological symptoms such as stress, depression, anxiety or abnormal coping.
“Some people who are attacked by a virus stay sick. What we’ve found is that their emotional functioning and psychological states are not statistically different from those who get attacked by the same virus and recover. This becomes important validating information for those people who have this illness,” said Jason.
Participants in the study each completed seven different surveys to assess potential symptoms of ME/CFS. They also received a comprehensive psychiatric exam, and provided samples of serum, plasma and white blood cells. In future publications, researchers aim to analyze cytokine networks in participants’ blood and other risk factors. Deficiencies in certain cytokines “might suggest predisposing irregularities in immune response,” wrote the researchers.
Vicky Whittemore, the program director at the National Institute of Neurological Disorders and Stroke (NINDS), stated that NINDS is supporting follow-up research to continue to study this cohort, and to examine possible predictors of COVID-19 as well. “Since we have baseline data on nearly all of the 4,500 students, we can use our same database to tease out risk factors for COVID infection as well as prolonged recovery from that illness” said Katz.
Other co-authors on the study are Joseph Colter, Mohammed F. Islam and Madison Sunnquist of DePaul’s Center for Community Research. The study, “Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study” was supported by the National Institute of Allergy and Infectious Diseases, grant number AI 105781. The full study is available at http://bit.ly/MECFS_2021.
DePaul scientists work to unravel the mystery of chronic fatigue syndrome
By Abigail Pickus
In 1980, a high school English teacher from Wisconsin named Pat Fero went on a trip to England. Healthy and in her 30s, she noticed something was very wrong toward the end of the trip.
“We were in this beautiful countryside, and we went to climb a hill to get a better view of a lake and I just couldn’t do it. I thought, I am really out of shape. I couldn’t get up that hill. My legs hurt, and I was dizzy and short of breath,” recalls Fero.
When she returned home the fever hit.
“I had a 104° fever for a week and a headache from hell. I had extreme pain in my neck and shoulders that lasted another week,” she says.
Over the next few years she got progressively sicker until she couldn’t climb the stairs at school without resting on the landing. Then she was unable to write on the chalkboard. “I would misspell things. I couldn’t form the letters correctly. I would miss words. Day-to-day communication became tough. That’s why I left the classroom. You can’t be in front of 20-some kids and seriously not know what you’re talking about,” she says.
In 1988, Fero went on medical leave—and never returned. That was the year she finally received a diagnosis for her suffering: chronic fatigue syndrome.
Tragically, Fero is not alone. Using research data developed at DePaul, the Centers for Disease Control and Prevention (CDC) estimates that there are currently more than1 million people in the U.S. and more than 17 million worldwide with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)—and these are just the ones who have been diagnosed. (See What’s in a Name?)
Often triggered by a virus, this debilitating disease continues to plague people for years with symptoms that run the gamut from nerve pain and cognitive impairments to a fatigue better characterized as bone-crushing exhaustion.
“Don’t use the word fatigue. It’s an exhaustion so severe that you can’t stand up because you feel like you’re going to faint,” says Fero.
Often lumped together with other so-called “mystery illnesses” such as Lyme disease and fibromyalgia, CFS/ME is historically misdiagnosed or underdiagnosed simply because one of its defining symptoms—fatigue—is both commonplace and seemingly benign. Adding insult to injury, CFS/ME is notoriously stigmatized because of its name “chronic fatigue,” suggesting that the patient is merely tired.
But the medical community is baffled, from what causes it to what it really is: A brain disease? A virus? And with federal funding for research into CFS/ME improving but still lower than for other major diseases, the quality of life for millions of Americans is left hanging in the balance.
Enter Leonard Jason, a professor of psychology at DePaul, who with his team has been making serious inroads into cracking the code on this mystery illness. “DePaul has been trying to validate the experience of patients with CFS/ME, to find ways to lessen the burden of this illness by reporting on accurate prevalence numbers among adults and children, to find effective treatments and to understand its etiology,” says Jason.
It’s a tall order, but with more than 800 professional publications and 25 books to his name (many on CFS/ME), plus more than $36 million in research grants, Jason and the DePaul Center for Community Research have emerged as leading figures in an area of medicine otherwise shrouded in darkness.
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.
Eight broadcasts featuring Leonard A. Jason from the Science to Patients Netherlands Program
Is it possible that a disease as impairing as Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease could be repeatedly belittled and delegitimized by scientists and health care professionals? Tragically, this is the case for a devastating illness affecting over one million Americans, and these patients have been deprived of their basic rights to respect, appropriate diagnosis, and humane treatment.
In the beginning, patients with this illness had a credible name, myalgic encephalomyelitis (ME), and diagnostic criteria that had been developed by the distinguished British physician, Dr. Melvin Ramsay. Yet, in 1988, the Centers for Disease Control (CDC) renamed this illness chronic fatigue syndrome (CFS). Patients were unanimous in their disdain for this trivializing term, but they were no match for the supreme power and authority of the CDC. The new name placed patients around the world in a compromised position, as they were now forced to use a degrading and stigmatizing term in explaining their illness to family members, friends, work associates and medical personnel.
Click here to read more on Leonard Jason’s blog for Oxford University Press.