There is a common misconception that people who come down with COVID-19 experience one of two disease courses: They have minimal or no symptoms that clear up in a week, or they get extremely ill and either die or recover after receiving intensive care treatment.
But now that the coronavirus has been under sharp focus for more than six months, physicians are noting that this binary belief is inaccurate. Some patients in both categories experience lingering symptoms and are at risk for long-term damage to organ systems weeks and months later.
According to a late July article in Science, the magazine of the American Association for the Advancement of Science, “The list of lingering maladies from COVID-19 is longer and more varied than most doctors could have imagined.” Among the continuing issues that patients encounter, the article says, are fatigue, a racing heartbeat, shortness of breath, achy joints, foggy thinking, a persistent loss of sense of smell and damage to the heart, lungs, kidneys and brain.
[See: What Are the Symptoms of Coronavirus?]
It’s hard to know how many patients develop long-term symptoms, the AAAS reports, because various studies all look at different outcomes and time periods. For example, a study from Italy published in JAMA revealed that 87% of patients hospitalized for COVID-19 were still experiencing at least one symptom — particularly fatigue or trouble breathing — two months later. The COVID Symptom Study, consisting of millions of patients from the U.S., U.K. and Sweden, found that 10% to 15% of patients have lingering health issues.
Some of these ongoing symptoms can be very serious. The Mayo Clinic reports that organ damage can occur in the following parts of the body:
— Heart. Heart scans taken months after COVID-19 recovery have shown “lasting damage” to the heart muscle, even in patients who had mild coronavirus symptoms. One study published in JAMA Cardiology found that 78 of 100 subjects diagnosed with COVID-19 showed evidence of heart damage caused by the disease weeks after they recovered.
— Lungs. Pneumonia, which often develops from COVID-19, can leave scar tissue on the air sacs (alveoli) in the lungs, which can cause long-term breathing problems.
— Brain. COVID-19 can cause strokes, seizures and Guillain-Barre syndrome, even among young patients. It may also add to the risk of developing Parkinson’s disease and Alzheimer’s disease.
— Circulatory system. COVID-19 appears to raise the risk for blood clots. Larger clots can cause heart attacks and strokes. But very small clots in the capillaries of the heart muscle are believed to cause most of the lasting cases of heart damage. Weakened blood vessels may also lead to long-term liver, kidney and leg problems.
“There is a misunderstanding that if I am young, healthy and make it out of the ICU, I will be fine, but recovery is not just surviving the ICU,” says Hallie Zeleznik, a doctor of physical therapy, board-certified neurologic clinical specialist and director of strategic initiatives and professional development for the Centers for Rehab Services at the University of Pittsburgh Medical Center. “Survival should be defined as returning to actions you enjoy and are important to you. You can work fully, interact with family and not be impacted by other problems. The idea that (COVID-19) survival (always) results in full recovery is a misconception. We know people who survive a critical illness may not return to normal health. Some can’t even drive again.”
[See: Fear, Courage, Grit: Meet More Than 50 ‘Hospital Heroes’ in Pictures.]
Post-Intensive Care Syndrome
Along with the damage done by the virus itself, many patients who spend time in an ICU, for any reason, suffer a condition called post-intensive care syndrome, or PICS. Symptoms include new or worsening impairments in physical, cognitive or mental health after a critical care stay that persist after hospital discharge. It’s pretty common, Zeleznik says. “In the U.S., about 5 million people are admitted to ICUs each year, and about 70-90% who survive can have PICS,” she says.
Physical problems, the most common, affect about 70% of PICS patients and include muscle weakness, walking and balance problems, pain, decreased lung function and difficulty with daily activities like bathing, dressing and doing laundry. Cognitive issues include loss of memory and organizational skills, and affect about half of those with PICS. Mental illness, including anxiety, depression and PTSD, can occur in 20-30% of patients.
PICS also impacts one’s ability to return to work. “At three months (post-ICU stay), 67% are not back to work,” Zeleznik says. “At one year, 40% are still not back. At five years, 33%. That’s a huge problem.”
COVID-19 is bringing more attention to PICS, which has been known about for a long time, Zeleznik says. “It’s hard to get accurate numbers on COVID now, but I think it’s a substantial problem. Patients are in the ICU and they are in there for longer period of time,” she says.
The good news is that rehab can help many PICS patients. Zeleznik, a spokesperson for the American Physical Therapy Association, has done extensive research on PICS and co-authored a paper published in the Physical Therapy Journal offering guidelines for managing PICS. The bad news, she says, is that rehab is not always a cure. “Over time, we know from the literature, people continue to have problems. Rehab helps, but generally people still have problems months to years out. This is a more longstanding problem.”
[See: Myths About Coronavirus.]
Long-Hauler Syndrome and the Coronavirus
Another issue afflicting COVID-19 patients has come to be known as long-hauler syndrome. A Centers for Disease Control and Prevention study found that 35% of people who test positive for COVID-19, even those with mild cases, continued to have persistent symptoms an average of 16 days after testing positive. (That compares to only 10% for the flu.) These symptoms include exhaustion, brain fog, insomnia, muscle pain, headache, heart palpitations and neurological problems, and can last for weeks or months.
They are often diagnosed as fibromyalgia, chronic fatigue syndrome or myalgic encephalomyelitis, and have followed many viral infections, including H1N1, MERS and SARS. Though statistics are unknown at this time, COVID-19 seems especially good at causing them.
“Basically, post-viral fatigue represents a human ‘energy crisis,’ where the virus causes a circuit breaker in the brain called the hypothalamus to malfunction,” says Dr. Jacob Teitelbaum, an authority on chronic fatigue syndrome and fibromyalgia. “It’s like when you plug in too many space heaters and you trip a circuit breaker. This pushes people over the cliff.” The hypothalamus controls sleep and hormonal function, and when it trips, it results in a combination of insomnia despite exhaustion, along with chronic pain, he says. “From there, it can then trigger an almost dizzying array of other symptoms.”
Teitelbaum, the author of the best-selling book “From Fatigued to Fantastic!” and the lead author of four studies on effective treatment for CFS and fibromyalgia, has been studying the syndrome since “a nasty viral infection knocked me out of medical school and left me homeless in 1975,” he says. After recovering, he focused his career on post-viral fatigue and developed a protocol of treatments which he calls SHINE, for sleep, hormones, immunity/infections, nutrition and exercise (as able).
“The key thing is helping the immune system,” Teitelbaum says, by providing it with zinc and vitamins D, K and C. Improving sleep patterns is also critical for immune function, he says. A study Teitelbaum authored found that the SHINE treatments helped 90% of people with CFS and fibromyalgia improve, with an average 91% increase in quality-of-life assessments.
“This is very, very, very treatable,” Teitelbaum claims. “Don’t be discouraged if your doctor is not familiar with it.” If you are still experiencing any of these symptoms six weeks after recovering from COVID-19 or another viral infection, he says, “it is time to be proactive to help your body recovery.”
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