April 20, 2023: Imani Ibrahim, a 33-year-old Chicago clinical social worker, became ill in January 2020. “I was very sick for a few days with flu-like symptoms. At that point, COVID-19 hadn’t become a big outbreak yet and I didn’t know what I had,” she said.
Two months later, he went to a conference just as “COVID became more of a media presence.” About a week later, Ibrahim began to experience a “constant, constant odor of cigarette smoke,” even though he did not smoke and did not live with smokers. The smell lasted a few weeks and became so overwhelming that it began to affect his mental health and quality of daily life.
Then she started to have no sense of smell at all. Although she was grateful to no longer feel the “ghost cigarette smell”, she would occasionally start to smell rotten meat. She also lost her sense of taste.
As the clinical director of a residential facility, Ibrahim was regularly tested for COVID and was always negative, but loss of taste and distorted smell caused people to avoid her, thinking she had COVID.
“Not only did I experience the stigma, but I was tired of not being able to enjoy food anymore,” she said. “Being able to share meals is important to me. I didn’t enjoy shared meals and had to change my mindset to eat just for sustenance, not because I enjoyed the food.”
But the stoy did not end there. A year and a half later, in December 2021, he contracted COVID again. “In addition to the loss of smell and taste, I started having migraines, which I had never had before, and feeling fatigue and severe brain fog..”
Now, nearly a year and a half after his second COVID infection, Ibrahim continues to battle migraines and brain fog, though sometimes his sense of taste returns a bit. “I can tell if something is sweet, but I can’t identify a particular taste of sweetness, like the taste of a donut,” he said.
Ibrahim is an example of someone who has persistent symptoms of long-term COVID, a condition that is the focus of a new study published in the annals of neurology. The study found what many patients and doctors are already finding: There is no single treatment for long-term COVID, and many different patients have many different symptoms.
Researchers in the new study looked at the first 600 patients with long-term COVID who were evaluated at the Northwestern Medicine Neuro COVID-19 Clinic, either in person or via telemedicine, between May 2020 and August 2021. The researchers compared those who had been hospitalized for acute COVID-19 pneumonia with those who had more severe forms. of the disease (100 vs. 500 patients, respectively). Patients were seen, on average, about 7 months after the onset of their COVID illness.
Only about 60% of the patients considered themselves “recovered” from their disease. Both groups of people showed an average of seven neurological symptoms, while more than nine in 10 said they had more than four symptoms.
Nearly all (81%) had brain fog, 70% had headaches, 56% lost their sense of smell, 55% had altered sense of taste, and 50% had dizziness. Other symptoms included muscle pain (48%), numbness/tingling (42%), pain other than chest (41%), ringing or other noise in the ear (29%), and blurred vision (26%).
“An important message from our new study is that COVID affects the nervous system and causes a severe decrease in quality of life and also causes cognitive dysfunction in patients,” said lead author Igor Koralnik, MD, chief of neuroinfectious diseases and global neurology. at Northwestern Medicine in Chicago.
Not ‘one size fits all’
Despite the common symptoms shared by hospitalized and nonhospitalized long-term COVID patients, the researchers found striking differences between the groups. For example, hospitalized patients had more abnormal neurological exams than nonhospitalized patients (62% vs. 37%), and they did worse on processing speed, attention, and working memory tasks. In contrast, non-hospitalized patients had lower scores only on care tasks.
“A second take-home message from our study is that the effects are not ‘one size fits all’: we saw differences in patients previously hospitalized for COVID pneumonia, compared with those who only had a mild case,” said Koralnik, who oversees the Neuro COVID-19 Clinic and is co-director of Northwest Medicine COVID-19 Comprehensive Center.
There were also demographic differences between the patient groups, Koralnik said. The patients who had been hospitalized were older, an average of 54 years old, and more ethnically and racially diverse, he said.
Previously hospitalized patients also had higher rates of other diseases, including diabetes, high blood pressure, high cholesterol, and heart disease.
By comparison, non-hospitalized patients were nearly a decade younger (average 45 years) and more likely to have depression and/or anxiety before becoming infected with COVID. There was a lower percentage of women among hospitalized versus non-hospitalized patients (58% versus 66%).
“Differences between non-hospitalized and hospitalized long-distance carriers suggest that there are distinct causes and mechanisms of long-term COVID in these populations,” Koralnik said.
This is one of the study’s innovations, Koralnik said. “This is the first study of its kind in the United States comparing these two patient populations. Previously, people weren’t separated based on the severity of acute symptoms.”
Even the definitions offered by the CDC, the World Health Organization, and the National Institutes of Health are “imprecise because they put everyone in the same basket.”
These approaches “do not distinguish between patients who had very severe acute illness and might even have suffered brain damage during their hospitalization versus those with milder illness who might have an autoimmune disease caused by persistence of the virus in the body.” Koralnik said.
He believes that “we need to pay attention to those similarities and differences in long-term COVID patients.” He recommends treating them with “precision medicine, based on their specific symptoms and needs.”
This is what Northwestern is doing, he said. For example, patients who arrive with mental confusion and perform below average on cognitive tests are referred to behavioral neurologists, who do a full evaluation and can find out what type of intervention the patient needs.
“‘Brain fog’ is an umbrella term that covers many different issues, such as processing speed, executive function or attention, and each may need a different intervention,” Koralnik said.
Fatigue and other non-neurological symptoms
In addition to neurological symptoms, people in the study reported other symptoms that reduced their quality of life: fatigue (86%), depression/anxiety (69%), insomnia (57%), shortness of breath (48%), changes in heart rate and blood pressure problems (34%), chest pain (30%), and gastrointestinal symptoms such as nausea, vomiting, or diarrhea (27%).
All patients showed significantly impaired quality of life in areas of cognition, fatigue, sleep, anxiety, and depression, compared with the rest of the US population.
“The fatigue I’ve had since COVID is not your usual tiredness, like you didn’t get enough sleep or you had a very busy day,” Imani said. “It’s extreme, and you feel like you have to go to sleep right now.”
And the brain fog is pretty severe, too, he said. For example, she could not remember her own date of birth and gave the doctor the wrong date. She has also had other memory problems, such as forgetting if she had taken Benadryl for allergies and taking an extra dose by mistake. “Now I write when I have taken a medication.”
Imani, who has a master’s degree in social work, also practices mindfulness that she has recommended to her clients in her private psychotherapy practice. “I try to be more organized and focused on what I do so that a situation like that doesn’t come up again.”
She uses mindfulness to expand the eating experience, due to her impaired sense of taste.
“Now, I’ve become a huge texture eater,” she said. I like to eat crunchier foods, which makes the eating experience more for me than just using food for sustenance. It’s a complete game changer for me to learn to be aware of other aspects of eating, not just the taste of food.”
Imani feels it is important to understand the daily challenges that COVID patients continue to face for a long time. She spoke “to raise awareness that there are people who don’t necessarily have COVID anymore, but are still dealing with difficult symptoms that continue to affect their lives.”