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COVID Longhaulers Endure Long Wait for Recognition and Treatment

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woman with brain fog
Lauren Green
Brain fog, memory loss, fatigue, and depression are common symptoms that plague large numbers of COVID longhaulers, who have struggled to get recognition and treatment.

Northeast Ohio has two clinics offering special services for people with lasting symptoms from COVID-19.

But wait times are long and involve seeing several specialists.

WKSU’s Jeff St.Clair reports that one year into the pandemic, the road to recovery remains a long haul for many COVID patients and providers.

A COVID sucker punch

The coronavirus knocked Donna Zalezny flat. A former nurse in her 40s, she was hit with an onslaught of symptoms including severe muscle pains, sore joints, and shortness of breath.

"It just felt like there wasn’t enough air in the room,” Zalezny said.

photo of Donna Zalezny
Donna Zalezny
Donna Zalezny was knocked flat by COVID early in the pandemic, and more than a year later she still struggles to regain her former resilience. She's become a longhauler advocate as she awaits treatment for her lingering symptoms.

She had heart palpitations, trouble focusing, brain fog, and above all, extreme fatigue. An avid gardener and outdoors person, the coronavirus sapped all her stamina.

More than a year later Zalezny is still struggling to regain a fraction of her former resilience. A short walk can feel like a marathon.

“I can manage maybe half a mile as long as I go really slowly,” she said.

She’s a COVID longhauler, one of a growing number of Ohioans who experience symptoms more than four weeks after the initial infection.

The condition's formal title is Post Acute Sequelae of SARS-CoV-2, or PASC, a name virtually no one uses. It's universally known as long COVID. This article in Nature is a good summary of what's known so far.

The struggle to be heard

Like many longhaulers early in the pandemic, Zalezny met with skepticism when she tried to get help for her array of lingering, but unusual symptoms, including a racing heart.

“I had a cardiologist tell me that my tachycardia, and my chest pains, and my shortness of breath were anxiety,” Zalezny said.

It’s been a long wait for recognition, said Amanda Finley who is the moderator of the COVID-19 Long-Haulers Facebook group.

“When we try to explain some of these symptoms particularly the stranger ones, like teeth chipping or loss of smell, our physicians don’t know, and they just chalk it up to anxiety,” Finley said.

A survey of around 1,300 longhaulers in her group showed that COVID caused more than 200 symptoms.

chart of symptoms
Keith Freund
A survey of around 1,300 members of the COVID-19 Long-Haulers Facebook group showed more than 300 symptoms targeting all parts of the body, some common, on the left, and others experienced by just a few people, for example, on the right.

They range from the common, like headaches, fatigue, brain fog, and shortness of breath, to the bizarre, like tooth pain, ringing in the ears, or vivid dreams. Many longhaulers experience anxiety, insomnia, and memory loss.

Finley says rather than dismiss people’s outlying symptoms, doctors need to take note of them to track the full extent of COVID’s impacts.

“If we’re not taking careful notes of these little things, we could be missing out on clues to put things together and miss events that might lead to more serious complications down the road,” Finley said.

Woman are hardest hit

Dr. Kristin Englund is taking note of various ways the virus can have long-term effects.

She’s head of the reCOVer Clinic, a new service at the Cleveland Clinic specializing in long COVID patients.

Englund says patterns are emerging, especially the prevalence among women.

“We're seeing about 80% female,” said Englund based on data from the initial set of 105 patients at the reCOVer clinic.

Most have fatigue, she says, but other symptoms are common.

“Dizziness is in about 52% of patients, brain fog is about 68% ...,” Englund said.

Half experience psychiatric problems, she said, including depression and paranoia.

Other longhaulers have visual problems, says Englund, along with trouble sleeping, hair loss, rashes, GI problems, or intolerance to heat and cold.

“It is not like any virus we have seen, in that it’s really widespread throughout so many organs,” she said.

Englund coordinates a team of 18 specialties to treat long COVID patients. They include cardiologists, pulmonologists, vascular medicine, neurology, psychiatry, renal doctors, sleep specialists, physical therapists, and others.

Patients will often see more than one specialist in the quest for a diagnosis.

An unfolding healthcare crisis

MetroHealth Medical Center in Cleveland also offers a post-COVID clinic to treat longhaulers.

Dr. Elisheva Weinberger is a rheumatologist who helped launch it in December.

“The reason why we put this clinic together was because we saw that this was likely going to overwhelm the primary care doctors,” she said.

She says the need is enormous.

“I think we’re hitting the tip of the iceberg,” Weinberger said.

Studies show that around half of people who’ve had the infection become longhaulers. That means more than 500,000 Ohioans have dealt, or are still dealing with long COVID, according to Weinberger.

“This is absolutely going to be a huge burden on health care,” Weinberger said.

Zalezny, after four months on the waiting list, will meet with COVID doctors at the Cleveland Clinic next month. She’s not the only one at the end of her rope.

“I know there are a lot of discouraged longhaulers out there right now,” she said.

The transmission rate may be receding in Ohio, but the aftermath of COVID-19 remains a challenge for our health care system and economic recovery as the true toll of the virus becomes apparent.

Jeff St. Clair is the midday host for Ideastream Public Media.