April 20, 2023 – Imani Ibrahim, a 33-year-old clinical social employee from Chicago, became sick in January 2020. “I was very sick for a few days with flu-like symptoms. At that point, COVID-19 was not a major outbreak and I didn't know what I had,” she said.
Two months later, she attended a conference just as “COVID was becoming more present in the media.” About per week later, Ibrahim began to “smell cigarette smoke continuously and constantly,” although she neither smoked nor lived with smokers. The smell lasted for just a few weeks and have become so overwhelming that it affected her mental health and her quality of life every day.
Then she lost her sense of smell. Although she was grateful to now not have the option to smell the “phantom smell” of cigarettes, she occasionally began to smell spoiled meat. She also lost her sense of taste.
As the clinical director of a residential facility, Ibrahim was repeatedly tested for COVID and the outcomes were consistently negative. However, on account of the lack of taste and distortion of smell, people avoided her, pondering 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 didn't enjoy communal meals and had to change my mindset and just ate to nourish myself, not because I liked the food.”
But the story didn't end there. A 12 months and a half later, in December 2021, she contracted COVID again. “In addition to losing my sense of smell and taste, I started getting migraines that I'd never had before, and I felt tired and had a very foggy feeling..”
Now — nearly a year and a half after her second COVID infection — Ibrahim continues to struggle with migraines and mental confusion, although her sense of taste sometimes returns a little. “I can tell if something is nice, but I can't discover a particular sweet flavor, just like the taste of a doughnut,” she said.
Ibrahim is an example of someone who has persistent symptoms of Long COVID, a disease that Focus of a new study published in Annals of NeurologyThe study revealed what many patients and doctors already know: There is no one-size-fits-all treatment for Long COVID, and many different patients have many different symptoms.
The researchers of the new study examined the first 600 long-COVID patients which 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 milder forms of the disease (100 and 500 patients, respectively). The patients were evaluated an average of about 7 months after the onset of their COVID illness.
Only about 60 percent of patients considered themselves “recovered” from their disease. Both groups of people had an average of seven neurological symptoms, while more than nine out of ten reported having more than four symptoms.
Almost all (81%) experienced brain fog, 70% had headaches, 56% lost their sense of smell, 55% had an altered sense of taste, and 50% experienced dizziness. Other symptoms included muscle pain (48%), numbness/tingling (42%), pain outside the chest (41%), ringing or other noises in the ear (29%), and blurred vision (26%).
“An essential message from our latest study is that COVID affects the nervous system, resulting in severe reductions in quality of life and cognitive dysfunction in patients,” said lead author Igor Koralnik, MD, chief of the Division of Neuroinfectious Diseases and Global Neurology at Northwestern Medicine in Chicago.
No one size fits all solution
Despite common symptoms shared by former hospitalized and non-hospitalized long-COVID patients, researchers found notable differences between the groups. For example, hospitalized patients had more neurological examination abnormalities compared to non-hospitalized patients (62% versus 37%) and performed worse on tasks of processing speed, attention, and working memory. In contrast, non-hospitalized patients performed worse only on attention tasks.
“A second essential message from our study is that the results are usually not 'uniform' – we found differences in patients who had previously been hospitalized for COVID pneumonia in comparison with those that had only a gentle case,” said Koralnik, who led the Neuro COVID-19 Clinic and is co-director of the Northwestern Medicine Comprehensive COVID-19 Center.
There are also demographic differences between patient groups, Koralnik said. Hospitalized patients are older – an average of 54 years old – and more ethnically and racially diverse, he said.
Patients who had previously been hospitalized were also more likely to have other medical conditions, such as diabetes, high blood pressure, high cholesterol and heart disease.
In comparison, non-hospitalized patients were nearly a decade younger—an average of 45 years old—and were more likely to have depression and/or anxiety before contracting COVID. The proportion of women among hospitalized patients was lower than among non-hospitalized patients (58% versus 66%).
“The differences between non-hospitalized and hospitalized long-term patients suggest that there are different causes and mechanisms for long COVID in these populations,” Koralnik said.
This is one of the novelties of the study, said Koralnik. “This is the primary study of its kind within the United States to check these two groups of patients. Until now, people haven't been differentiated in line with the severity of acute symptoms.”
Even the definitions of the CDC, the World Health Organization and the National Institutes of Health are “inaccurate because they lump everyone together.”
These approaches “don't distinguish between patients who had a really severe, acute illness and will even have suffered brain damage during their hospital stay, and those that have a milder illness and could have an autoimmune disease attributable to the persistence of the virus within the body,” Koralnik said.
He believes we need to “listen to those similarities and differences in patients with Long COVID.” He recommends treating them with “precision medicine based on their specific symptoms and wishes.”
That's exactly what Northwestern does, he said. Patients who come in with brain fog, for example, and who score below average on cognitive tests, are referred to behavioral neurologists who can do a comprehensive evaluation and figure out what kind of intervention the patient needs.
“'Brain fog' is an umbrella term that covers many various problems, resembling processing speed, executive function or attention, and every of those may require a distinct intervention,” Koralnik said.
Fatigue and other non-neurological symptoms
In addition to neurological symptoms, study participants reported other symptoms that affected their quality of life: fatigue (86%), depression/anxiety (69%), insomnia (57%), shortness of breath (48%), heart rate fluctuations and blood pressure problems (34%), chest pain (30%), and gastrointestinal symptoms such as nausea, vomiting, or diarrhea (27%).
In all patients, quality of life was significantly impaired in the areas of cognition, fatigue, sleep, anxiety and depression compared to the rest of the US population.
“The fatigue I actually have had since COVID just isn't normal fatigue, like while you haven't slept enough or have had a really stressful day,” Imani said. “It's extreme and you are feeling like you have got to fall asleep in the mean time.”
And the brain fog was pretty bad, too, she said. For example, she couldn't remember her own birth date and gave the doctor the unsuitable date. She had other memory problems too, like forgetting if she'd taken her Benadryl for allergies and unintentionally taking an additional dose. “Now I write down when I took a medication.”
Imani, who has a master's degree in social work, also practices mindfulness, which she recommends to her clients in her private psychotherapy practice. “I try to become more organized and focused so that a situation like this doesn't happen again.”
Because of her impaired sense of taste, she uses mindfulness to reinforce her eating experience.
“Now I eat a lot more texture,” she said. I prefer to eat crunchier foods, which makes eating more of an experience for me moderately than simply using it as food. It's been a whole shift for me as I'm learning to listen to other features of eating, not only the taste of the food.”
Imani believes it is important to understand the daily challenges long-term COVID patients continue to face, saying she was speaking out “to lift awareness that there are people who find themselves now not necessarily sick with COVID, but are still coping with difficult symptoms that proceed to affect their lives.”