April 20, 2023 – Imani Ibrahim, a 33-year-old Chicago-based 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 had not yet become a big outbreak, and I didn’t know what I had,” she said.
Two months later, she went to a conference just as “COVID became more of a media presence.” About a week later, Ibrahim began sensing a “nonstop, consistent smell of cigarette smoke,” although she was not a smoker and didn’t live with smokers. The odor lasted for a few weeks and became so overwhelming that it began to affect her mental health and day-to-day quality of life.
Then she began having no sense of smell at all. Although she was grateful to no longer sense the “phantom cigarette odor,” she occasionally began smelling rotten meat. She also lost her sense of taste.
As the clinical director of a residential facility, Ibrahim was being tested regularly for COVID and consistently tested negative, but the loss of taste and the distortions in odor made people avoid her, thinking that she had COVID.
“Not only did I experience 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 wasn’t enjoying shared meals and had to shift my mindset to eating only for sustenance, not because I enjoyed the food.”
But the story didn’t end there. A year-and-a-half later, in December 2021, she got COVID again. “In addition to the loss of smell and taste, I began to have migraines, which I never had before, and to feel fatigue and severe brain fog.”
Now – almost a year-and-a-half after her second COVID infection – Ibrahim continues to struggle with migraines and brain fog, although sometimes, her sense of taste returns a little. “I can tell if something is sweet, but I can’t identify a particular flavor of sweetness, like the taste of a doughnut,” she said.
Ibrahim is an example of someone who has lingering symptoms of long 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 discovering: There is no single treatment for long COVID, and many different patients are having many different symptoms.
Investigators in the new study looked at the first 600 long COVID patients who were evaluated at the Northwestern Medicine Neuro COVID-19 Clinic, either in person or via telemedicine, between May 2020 and August 2021. Researchers compared those who had been hospitalized for acute COVID-19 pneumonia to those who had had milder forms of the disease (100 vs. 500 patients, respectively). Patients were seen, on average, about 7 months after the start of their COVID illness.
Only about 60% of patients regarded themselves as “recovered” from their illness. Both groups of people showed an average of seven neurological symptoms, while more than nine out of 10 said they had more than four symptoms.
Almost all (81%) had brain fog, 70% had headaches, 56% lost their sense of smell, 55% had an altered sense of taste, and 50% had dizziness. Other symptoms included muscle pain (48%), numbness/tingling (42%), pain other than in the chest (41%), ringing or other noises in the ear (29%), and blurred vision (26%).
“An important take-home message of our new study is that COVID affects the nervous system and causes severe decrease in quality of life and also causes cognitive dysfunction in patients,” said senior author Igor Koralnik, MD, chief of neuroinfectious diseases and global neurology at Northwestern Medicine in Chicago.
Despite common symptoms that former hospitalized and non-hospitalized long COVID patients share, the researchers found notable differences between the groups. For example, hospitalized patients had more abnormal neurologic exams, compared to non-hospitalized patients (62% vs. 37%) and did worse on processing speed, attention, and working memory tasks. By contrast, non-hospitalized patients had lower results in attention tasks only.
“A second take-home message of our study is that the effects aren’t ‘one-size-fits-all’ – we observed differences in patients previously hospitalized for COVID pneumonia, compared to those who only had a mild case,” said Koralnik, who oversees the Neuro COVID-19 Clinic and is co-director of the Northwestern Medicine Comprehensive COVID-19 Center.
There were also demographic differences between the groups of patients, Koralnik said. Patients who had been hospitalized were older – an average of 54 years old – and and more ethnically and racially diverse, he said.
Previously hospitalized patients also had higher rates of other illnesses, such as diabetes, high blood pressure, high cholesterol, and heart disease.
By comparison, non-hospitalized patients were almost a decade younger – on average, 45 years old – and were more likely to have depression and/or anxiety before being infected with COVID. There was a lower percentage of women among the hospitalized vs. the non-hospitalized patients (58% vs 66%).
“The differences between the non-hospitalized and hospitalized long-haulers suggests that there are distinct causes and mechanisms of long COVID in these populations,” Koralnik said.
This is one of the study’s innovations, Koralnik said. “This is the first-of-its-kind study in the United States comparing these two populations of patients. Previously, people were not separated based on acute symptom severity.”
Even the definitions offered by the CDC, the World Health Organization, and the National Institutes of Health are “imprecise because they put everybody into the same basket.”
These approaches “don’t distinguish between patients who had very severe acute illness and might even have sustained brain damage during their hospitalization vs. those who had milder disease who might have an autoimmune illness caused by the persistence of the virus in the body,” Koralnik said.
He believes we “need to pay attention to those similarities and differences in patients with long COVID.” 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 come in with brain fog and perform below average on cognitive tests are referred to behavioral neurologists, who do a full assessment and can find out what type of intervention the patient needs.
“’Brain fog’ is an umbrella term covering many different issues, like processing speed, executive function, or attention, and each one may need a different intervention,” Koralnik said.
Fatigue and Other Non-Neurological Symptoms
In addition to the neurological symptoms, people in the study reported other symptoms that lowered their quality of life: fatigue (86%), depression/anxiety (69%), insomnia (57%), shortness of breath (48%), variations of heart rate and blood pressure issues (34%), chest pain (30%), and gastrointestinal symptoms, such as nausea, vomiting, or diarrhea (27%).
All of the patients showed significantly impaired quality of life in areas of cognition, fatigue, sleep, anxiety, and depression, compared to the rest of the U.S. population.
“The fatigue I’ve had since COVID isn’t ordinary tiredness, like if you haven’t gotten enough sleep or have had a very busy day,” Imani said. “It’s extreme, and you feel you have to go to sleep right now.”
And the brain fog is also quite severe, she said. For example, she couldn’t remember her own birth date and gave the wrong date to the doctor. She’s had other memory problems as well, like forgetting if she had taken her Benadryl for allergies and mistakenly taking an extra dose. “Now I write down when I’ve taken a medication.”
Imani, who holds a Master’s degree in social work, also practices mindfulness she has recommended to clients in her private psychotherapy practice. “I try to become more organized and focused on what I do so that a situation like that won’t come up again.”
She uses mindfulness to expand the experience of eating, because of her impaired sense of taste.
“Now, I’ve become a huge texture eater,” she said. I like to eat more crunchy food, which makes the eating experience more for me than just using food as sustenance. It’s a whole shift for me in learning to be mindful about other aspects of eating, not just how the food tastes.”
Imani feels it’s important to understand the day-to-day challenges long COVID patients continue to face. She spoke out “to bring 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.”