Cape Cod Times
When Marianne Williams of Marstons Mills got sick with COVID-19 in March, her symptoms were relatively mild. She lost her sense of taste and smell and experienced some shortness of breath but never developed a sore throat.
Williams thought she, along with her husband and daughter, had dodged a bullet.
“We all got it,” said Williams, 56. “Not only were we not hospitalized, we never even had a fever.”
But 11 months later, she has never fully recovered.
“Some days I can’t walk up the stairs. I can’t catch my breath.”
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Her sense of taste and smell have come back, but not completely.
“Peanut butter ice cream tastes like cigarette smoke to me. It’s the weirdest thing,” Williams said. Some other foods also taste strange but she worries most about not being able to smell gas since her family has a gas stove.
“It never really was bad,” she said about her case of COVID-19. “But it just never went away.”
Williams is one of the thousands — and potentially millions — of COVID-19 survivors nicknamed “long haulers” who suffer lingering effects from the coronavirus infection.
What are COVID long-haulers?
“Published studies and surveys conducted by patient groups indicate that 50% to 80% of patients continue to have bothersome symptoms three months after the onset of COVID-19 — even after tests no longer detect virus in their body,” Dr. Anthony Komaroff wrote in the Harvard Health Letter, of which he is editor-in-chief.
Sufferers experience a bewildering array of symptoms, the most common of which are hair loss, body aches, headache, difficulty sleeping, fatigue and shortness of breath.
Individuals on a Facebook group for long haulers called Survivors Corps also describe experiencing heart palpitations, skin lesions, blurry vision and a phantom smoke smell.
Long haulers say they feel frustrated at the lack of treatments or understanding of the lingering symptoms that currently exist in the medical community.
“I just want answers. I feel I’ve been waiting so long,” said Claudine Wrighter of Pocasset, who developed pain in her joints months after being discharged from a hospital after receiving treatment of COVID-19.
“The scary thing is it’s so new,” said Kevin Lasit, of Sandwich, who experienced persisting symptoms after he was hospitalization with the coronavirus.“No one really has any answers.”
“To say it’s poorly understood is true,” said Dr. Christian Sandrock, a professor of pulmonary and critical medicine at the University of California Davis School of Medicine.
Sandrock, who prefers to use the term post-acute COVID syndrome to describe the phenomenon, said its impact on people who were never hospitalized for coronavirus “is actually really quite unique.”
“We don’t see it as much with influenza and other viral infections,” he said during a Feb. 17 Zoom session for the media hosted by Sci-Line, a program of the American Association for the Advancement of Science.
For those who were hospitalized with COVID-19, the persistence of symptoms is more common than not, according to recent studies.
A Jan. 8 report in the medical journal The Lancet shows that 76% of 1,733 adult COVID patients discharged from a hospital in Wuhan, China, reported at least one lingering symptom, the most common of which was fatigue or muscle weakness, six months after falling ill.
Pain getting worse
Forty-five-year-old Wrighter thought at first that her persistent symptoms were related to post-traumatic stress from spending nine days in a negative pressure room at Falmouth Hospital in March, fighting to breathe with double pneumonia and sepsis from COVID-19.
“I thought I was on the road to recovery,” said the mother of two daughters, ages 13 and 15.
But in September she started experiencing excruciating knee pain. The past couple of months the body aches spread to her fingers.
“Even pulling the sheets up in the morning — it hurts to pull my sheets up,” she said. “I’m just tired. The biggest thing is the pain. My pain is not getting better. It’s really gotten worse.”
After standard medical tests didn’t show abnormalities, Wrighter said she got her CK (creatine kinase) levels tested at a friend’s suggestion and found they were elevated.
An enzyme that leaks out of damaged muscle, CK at high levels in blood samples indicates destruction by some sort of process that could include inflammation.
Wrighter said she has an appointment with a rheumatologist to discuss the results.
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Post-acute COVID patients could be suffering from excess inflammation caused by autoimmune antibodies, Sandrock said.
Other possible culprits include the impact of the virus on the central nervous system — which could affect taste and smell — and COVID-related microvascular disease that damages tissues and restricts blood flow in capillaries.
Microvascular disease can cause strokes and heart attacks in patients with acute COVID-19, Sandrock said. It may also persist for months and cause chest pain, low oxygen levels and fatigue.
But putting a finger on one cause could be difficult, Sandrock said. “The hard part is to figure out what’s leading to most of this.”
What are the most common long-term symptoms of COVID-19?
For many long haulers, depression and anxiety accompany pain, fatigue and memory loss associated with “brain fog.”
“If I don’t write it down, forget it,” Wrighter said.
“You sit at the computer and you just forget. It’s got me (feeling) blah.”
Fifty-three-year-old Lasit said dealing with lingering symptoms of COVID-19 as well as the pandemic’s effects on society “really did a number on me.”
He was surprised when it took him six months to get back to his regular 4-mile walks on the Cape Cod Canal after being treated for COVID-19 from March 27 to April 2 at Cape Cod Hospital in Hyannis.
And for months he experienced intermittent fatigue and body aches.
“My muscles felt sore. My bones felt sore. I can’t pinpoint why I would feel more fatigued some days. It would vary from week to week, month to month,” said Lasit, an actor and drama director for the Sandwich High School drama club.
“This whole year really shook me to the core,” he said. “I even battled depression because of it. I felt different about who I was and how I was functioning in the world.”
Williams said a physician gave her a prescription for Ativan to deal with the anxiety brought on by periods of shortness of breath.
“There’s no rhyme or reason. Around Christmas, I was sitting on the couch and couldn’t catch my breath. It’s very scary,” Williams said. “I was getting panicky. Then I couldn’t breathe because I was panicked.”
Post-acute COVID syndrome is real
It’s important that both sufferers and their physicians recognize post-acute COVID syndrome is an actual disease, said Sandrock, who works with post-acute patients at a U.C. Davis clinic.
In the Harvard Health Newsletter, Komaroff includes among long haulers not only people diagnosed with COVID-19 but also those likely to have been infected by it.
That definition includes Williams, whose husband, Greg, 70, was the only member of the family able to get a COVID-19 test in March.
Gregory and their daughter Livvy, 20, have since recovered, Williams said.
She said the doctor said the whole family should be considered infected since both she and Livvy had symptoms including the loss of their sense of taste and smell.
“I spilled bleach, and I couldn’t smell it. That’s how I knew,” said Williams, who still can’t stand the taste of her favorite beet salad.
Lifestyle modifications important
Sandrock said post-acute COVID syndrome shares some similarities with chronic fatigue syndrome, another little-understood syndrome that people too often dismiss as a psychiatric issue.
Since there are no medically approved treatments for post-acute COVID syndrome, physicians who work with those patients suggest making lifestyle changes that ease pain and stress, Sandrock said.
Yoga, meditation, regular walks, good nutrition and good sleep habits are key, as is taking more time to accomplish tasks when necessary and carving out quiet time during the day, he said.
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Williams said she maintains a yoga practice at home, doing the poses to recordings from her favorite local studio.
Wrighter said keeping busy during the day when her pain is less severe — helps. She got a real estate license during the pandemic and is slowly rebuilding her business, Pocasset Pretzel.
Lasit, who said his symptoms are going away on their own, still has days when he feels more fatigued than he would have pre-COVID.
“When it happens, you just have to lay low. I’ve been really focusing this year on myself. If that means halfway through the day I have to stop and take a nap, that’s what I do,” he said.
Lasit, who also helps his wife, Melinda, direct the Sandwich High School show choir, Sandwich Soul, said he meditates regularly and writes in his journal.
Both Lasit and Wrighter said they have donated plasma at the American Red Cross in Raynham several times to help treat COVID-19 patients.
The next appointment for Lasit is March 16 — a year to the day since he fell ill with COVID-19.
Who is researching long-term symptoms of COVID?
While post-acute COVID syndrome is still a medical mystery, hospitals and research centers around the country are beginning to study the long-hauler phenomenon.
In June, Spaulding Rehabilitation Network started enrolling adults who received acute COVID care within
the Massachusetts General Brigham hospital system and post-acute care at Spaulding to study the course of recovery, Timothy Sullivan, spokesman for Spaulding, said.
One hundred nine participants are currently enrolled and more Spaulding patients are expected to join. The study is funded through the Spaulding Discovery Center for COVID-19 Recovery.
The National Institutes of Health is conducting a study of long-term medical problems and immunity after COVID-19.
Dr. Hana Akselrod, assistant professor of medicine at the George Washington University School of Medicine and Health Sciences, said the school has a post-COVID clinic that is planning to study a diverse cohort of patients.
The pandemic requires medical centers to balance care for those who are acutely ill “with all the follow-up care in a health care system that is straining at the seams,” she said.
Research centers need to find a way to share data on post-acute COVID syndrome patients, Sandrock said. And he said individual institutions need to develop an interdisciplinary approach to patients.
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The post-acute COVID clinic at U.C. Davis involves nine departments, including pulmonary and ear, nose and throat, whose members regularly have Zoom meetings to discuss patient cases, Sandrock said.
“We actually just sit in and talk about what we’re doing. And we’ll say, hey, I tried anticoagulation, and I noticed this group of patients gets better. Now, that’s far from science. That’s purely anecdotal, but it gives us some sense of where we may go,” he said.
Williams has thought about participating in a clinical trial, but she is nervous about being in a hospital setting.
“Right now I’m managing it. I’m living my life,” said Williams, a grant writer for a nonprofit organization.
She said her message for the public is to take COVID-19 seriously.
“You don’t have to die for it to affect you for the rest of your life,” Williams said.
Symptoms of post-acute COVID-19 syndrome
Ongoing, sometimes debilitating, fatigue
Shortness of breath
Loss of taste and smell — even if this didn’t occur during the height of illness
Source: University of California at Davis
How to relieve symptoms of post-acute COVID-19 syndrome
There are no medically approved treatments for post-acute COVID syndrome, but physicians suggest patients make the following lifestyle changes that ease pain and stress:
Regular moderate exercise such as taking a walk
Good sleep habits