CHICAGO — As people with long-haul COVID-19 continue to recover from their illness, neurocognitive symptoms may persist or even worsen over time, as reported in new findings from researchers at DePaul University. Psychologist Leonard A. Jason led the study comparing those with long-haul COVID-19 with patients who have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Comparing long-haul COVID-19 with another chronic illness could help researchers uncover root causes of long-term illness and inform their approach to care, Jason said. Many other symptoms of long-haul COVID-19 do appear to improve over time, which diverges from the experience of most with ME/CFS. Findings were published in the journal “Fatigue: Biomedicine, Health & Behavior” and are available at http://bit.ly/LJ_C19.
“The symptoms hanging on most for COVID-19 long-haulers are sometimes referred to as ‘brain fog.’ People have trouble problem solving, or they get in the car and forget where they’re supposed to be going,” said Jason, director of the Center for Community Research at DePaul. Researchers defined long-haul COVID-19 as having serious, prolonged symptoms three months after contracting the SARS CoV-2 virus.
Researchers surveyed 278 long-haul COVID-19 patients about their symptoms at two points, six months apart. They also surveyed 502 ME/CFS patients about their symptoms, which have significant overlap with COVID-19. Jason and his team used the DePaul Symptom Questionnaire, a self-report measuring tool developed for use with ME/CFS patients. Researchers found:
- At the six-month mark, COVID-19 long-haulers report worse neurocognitive symptoms than at the outset of their illness, including trouble forming words, difficulty focusing and absent-mindedness. Still, these symptoms were ranked less severe than those with ME/CFS.
- Most other symptoms, including sleep problems, immune-related issues, pain and gastrointestinal issues, seem to improve over time for COVID-19 long-haulers.
- The most severe symptom for COVID-19 long-haulers and ME/CFS patients alike was post-exertional malaise, which includes feeling physically and mentally drained or heavy.
These findings may provide other researchers with insights into nervous system pathophysiology, such as that found in patients with ME/CFS. While ME/CFS is known to have many triggers, including the Epstein-Barr virus, not every patient knows what led to their illness, noted Jason. However, COVID-19 long-haulers have a single virus to point to as the initial cause of their symptoms. Both groups face similar challenges as their family members and health care workers may not understand the changing symptom patterns.
“We don’t know how many long-haulers will stay on this type of trajectory,” Jason said. He and other researchers estimate about 10% of people who have COVID-19 become long-haulers. In reviewing the literature, the researchers found that past epidemics, including the 1918 pandemic, have also led to many patients having long-term fatigue.
“These types of serious neurocognitive complications are incredible given that millions of people have been infected,” Jason said.
DePaul Center for Community Research co-authors on the study include Mohammed Islam, Karl Conroy, Joseph Cotler, Chelsea Torres, Mady Johnson and Brianna Mabie. Funding for this research was provided by the National Institute of Neurological Disorders and Stroke (grant number 5R01NS111105).
Kristin Claes Mathews
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.
contributed by Dr. Lily Chu
Contrary to popular belief, up to 50% of people who die by suicide may not be affected by a mental health condition. A substantial majority though had visited a healthcare provider in the previous year. These findings suggest that physical health, and not only mental health, may impact suicide risk.
One physical health condition that may increase suicide risk is myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). In fact, suicide may be the number one cause of death for people afflicted by ME/CFS. Most of the public and many healthcare professionals have never heard of this disease. Others might have been exposed to wrong or obsolete information. Crisis center staff and volunteers may encounter callers affected by ME/CFS. We share basic facts about ME/CFS and concrete steps crisis centers can take to help callers. By the end of this post, you will know more about this disease than most physicians!
Have you ever heard of or read about ME/CFS? Share your thoughts, experiences, and questions by commenting below.
What is myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS)?
ME/CFS is a chronic, complex, medical condition which affects at least a million Americans. That makes it more common than better-known conditions like multiple sclerosis or Parkinson’s disease. In the past, ME/CFS was believed to affect primarily upper-middle class, Caucasian, middle-aged women. Later studies showed that people of both sexes and all ages, races, and socioeconomic background can be affected.
ME/CFS often strikes people in their teenage or early adult years following common infections like Epstein-Barr virus mononucleosis (popularly called “mono”). For reasons we don’t understand yet, about 10% of people who fall ill do not recover and develop ME/CFS in the subsequent days to months. Current evidence does not suggest ME/CFS is contagious. Rather a persistent dysregulation of the immune system may have resulted in uncontrolled/ re-awakened infections or an autoimmune process in the sick individual.
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.
2019 (April 18). Leonard Jason, Academic Minute. Most people think of psychologists in very traditional ways. http://bit.ly/LJasoAM
Psychologists are more than therapists.
Leonard Jason, professor of clinical psychology at DePaul University, examines the field of community psychology.
Leonard Jason is a professor of clinical and community psychology in DePaul University’s College of Science and Health. He’s also the director of DePaul’s Center for Community Research. A DePaul faculty member since 1975, Jason’s research interests include chronic fatigue syndrome and myalgic encephalomyelitis, recovery homes, school violence and methods for prevention, smoking and methods for prevention, media interventions, children and media, and community building. He’s an editorial board member for the Journal of Community Psychology, the Journal of Prevention and Intervention in the Community, the Journal of Health Psychology, and Fatigue: Biomedicine, Health & Behavior. He’s the author of the 2013 book, Principles of Social Change. Jason holds a Bachelor of Arts in psychology from Brandeis University and a doctorate in clinical and community psychology from the University of Rochester.
Defining Community Psychology
Most people think of psychologists in very traditional ways. For example, if you were to close your eyes and imagine one, there is a good chance you would think of a therapist.
My field is called community psychology, and it is a wonderful blend of psychology and sociology. It creates new roles and opportunities for psychologists by extending the reach of services to those who have previously been under-represented. It also focuses on prevention rather than just treatment of psychological problems and on actively involving community members in the change process. In a sense, we are like community organizers but specifically trained to be able to evaluate whether or not our social justice interventions are effective.
The field of community psychology focuses on preventing — rather than just treating — psychological problems. In fact, no condition or disease has ever been eliminated by focusing just on those with the problem. An impressive example of prevention occurred with community efforts to change the landscape of tobacco use over the past 50 years. Today, attitudes have changed toward tobacco use and there are substantially fewer smokers. Community organizations aided by community psychologists made important contributions to these efforts.
The community psychology approach shifts the power dynamic to a less hierarchical, equal relationship, as all parties participate in the decision-making process. Community members are seen as resources, who provide unique points of view about the community and the institutional barriers that might need to be overcome in social justice interventions.
Community psychology’s focus on social justice is due to the recognition that many of our social problems are created when resources are disproportionately allocated throughout our society, which causes social and economic inequalities such as poverty, homelessness, unemployment and crime.
It’s important that we as a society continue to look for transformative ways of solving social problems, and community psychologists are here to help.