DETROIT — Tania Allen wasn’t all that upset about being unable to smell her food anymore, though it was unsettling and she didn’t especially like that effect of COVID-19.
But it was when she realized she couldn’t take in the scent of her children’s hair when she hugged them that coronavirus hit her where it hurts.
“That brought me to tears,” said Allen, 42, of Harrison Township, a mother of two. “What bothered me the most is I couldn’t smell my kids.”
Though she didn’t have a severe case of COVID-19 and was never hospitalized, Allen still is plagued by headaches eight months after she first contracted the virus. Brain fog sometimes makes it hard for her to find the right words to say.
For Miriam Dinkins, exhaustion and shortness of breath are now fickle companions more than a year after she recovered from COVID-19 — there one day, gone the next.
Fear that she could contract the virus a second time sparks anxiety. Dinkins, 60, of Lincoln Park, who is fully vaccinated, said she is sometimes overwhelmed by panic thinking about the slim possibility.
She avoids crowded places and many of the things she used to do, like shopping, going to the movies or working in person at her office in Detroit, where she is in accounts payable for the Suburban Mobility Authority for Regional Transportation.
“I was … in intensive care,” she said of her hospitalization in March 2020. “I didn’t know if they were going to put me on the vent(ilator) or not. I felt like I was dying, you know? And when you hear people all around you, you hear ‘code blue’ and people running down the hall, that is just a scary, scary feeling.
“I feel like I have post-traumatic stress.”
That anxiety combined with the uncertainty of never knowing whether she’ll wake up each day feeling good or feeling crippled by her post-COVID-19 symptoms swirl together, causing depression.
“It just feels like a never-ending roller coaster ride,” Dinkins said. “This has got to stop.”
Becaye Kante said the coronavirus has stolen his quality of life too.
He contracted the virus in late January and still has difficulty walking long distances or standing for extended periods of time. His ears ring.
“When the symptoms are bad, I feel fatigued. My muscles ache, a little bit of headaches, a little bit of difficulty breathing,” said Kante, who is 49, lives in Detroit’s Midtown neighborhood and works as a quality operating system coordinator for Ford Motor Co. “I’m still working.
“It’s just that sometimes I feel these symptoms coming back. … They come and go. They come and go, come and go.”
All three Michiganders suffer from what’s now known as long COVID, or post-acute COVID syndrome.
All three also are seeking help from doctors at Henry Ford Health System, which has created a post-COVID recovery program to help patients overcome the myriad long-term aftereffects of the virus.
Post-COVID clinics are popping up all over the country at big medical centers such as Johns Hopkins in Maryland, Mount Sinai in New York, Yale University Medicine’s post-COVID recovery program in New Haven, Connecticut, and the University of Michigan in Ann Arbor.
What makes Henry Ford’s approach different is that it extends throughout the five-hospital health system and its network of outpatient clinics, enlisting more than 250 primary care doctors to treat COVID-19 long haulers, said Dr. Eunice Yu, an internal medicine physician who is medical director of post-COVID recovery care.
“What we’re hearing from patients with long COVID is that they need continuous care,” she said. “They need accessible care. They want comprehensive care, and it needs to be coordinated because a lot of times there’s multiple issues going on. … You need someone who is the quarterback of that team to help you … coordinate all of that.”
The quarterback is the primary care doctor, said Yu, who also is the physician lead of design and innovation for the health system.
“We have basically a pool of experts that we’ve assembled that any primary care doctor, really any clinician in the system, can reach out to … if they have questions about long COVID. And we work from a series of assessments and protocols and guidelines that our team has assembled with the help of over 11 specialties in our system to take better care of this group of folks.”
Those specialists include cardiologists, pulmonologists, experts in psychology, psychiatry, physical therapy and rehabilitation, neurology, speech language pathology and others.
For patients whose symptoms are especially challenging to treat, the health system has a multidisciplinary Covid Recovery Care Team, which brings specialists together to review the details of each case and make recommendations, much like a tumor board does for cancer patients.
The hope is that by taking this approach, help will be more accessible to more people. Demand for treatment of long COVID symptoms is so huge, Yu said, many clinics are overrun with patients.
“What many of these centers have found is that they immediately fill up and start having a wait list into 2022,” she said. “In order to manage their population, they’re creating exclusions like, ‘We can only see you if you were hospitalized for COVID’ or ‘We can only see you if you were in the ICU (intensive care unit) for COVID’ or ‘We can only see you if you have a documented laboratory positive COVID finding,’ even though early on in the pandemic, many COVID patients were not able to get testing.
“We wanted to be able to serve patients who had highly probable cases of COVID whether or not they were in the hospital. We wanted to serve our whole population.”
It’s unclear how many people who are infected with coronavirus go on to develop long COVID symptoms, though estimates range from 10% to 30%.
A June 15 report by the nonprofit Fair Health analyzed the private health insurance claims records of almost 2 million people who had COVID-19 in 2020. It found 23.2% of people reported one or more health problems that continued at least four weeks after being diagnosed with COVID-19.
If that statistic is accurate, that means in Michigan alone, as many as 200,000 people could be suffering from post-COVID health conditions that can affect multiple organ systems in the body — from the kidneys, to the lungs, heart, brain, nerves, liver and intestines.
The U.S. Centers for Disease Control and Prevention defines long COVID as a condition lasting four or more weeks after recovery from an initial coronavirus infection, with symptoms that most commonly include:
- Shortness of breath
- Cognitive impairment, also known as brain fog
- Chest pain
- Heart palpitations and/or tachycardia
- Joint and muscle pain
- Paresthesia, which is a tingling, prickling sensation that is usually felt in the hands, arms, legs or feet
- Abdominal pain
- Insomnia and other sleep difficulties
- Impaired daily function and mobility
- Mood changes
- Loss of sense of test and or smell
- Menstrual cycle irregularities
- Multisystem inflammatory syndrome (MIS) and autoimmune conditions
- Post-exertional malaise, which is the worsening of symptoms following even minor physical or mental exertion. Symptoms typically worsen 12 to 48 hours after activity and the malaise can last for days or weeks after.
Dr. Omar Danoun, a Henry Ford neurologist, describing SARS-CoV-2 as a virus that “is like pouring gasoline to the fire.”
Danoun treats Allen’s headaches and brain fog; she happens to work as a neurodiagnostic tech at the hospital. And he also helps other patients with long COVID, both in his medical practice and from his home, where he makes YouTube videos about it in English and in Arabic.
His videos offer tips and suggestions people can try at home to relieve their long COVID symptoms, and explain in simple terms what’s happening in their bodies to cause those symptoms.
“I should have done this 10 years ago,” said Danoun, whose videos have been viewed thousands of times by people from around the world. “I want to increase my impact. Instead of seeing five to 10 patients a day, I want to see thousands a day. How I can do that? Just by putting the information on the internet.
“If you provide the answer in a simple way that everyone can understand … you can make an impact. I started with the smell loss, and talking about neurology and COVID-19. … I want to make multiple videos to answer questions.”
Allen followed the suggestions Danoun offered her about restoring her sense of smell through olfactory training, which is a process of systematically using strong, commonly known scents to stimulate the brain to restore connections and allow a person to smell again.
People can try it with whiffing the aroma of things like lemons or oregano or by sniffing essential oils for about 25 seconds for each scent — with a 1-minute gap between odors — every morning and every evening over the span of several months, Danoun said.
It has been a long and slow process, but Allen says her sense of smell is much closer to normal now.
“Steak smells like steak,” she said. “A burger smells like a burger.”
And blessedly, the smell of her kids’ hair is back.