How Are Post-COVID Care Clinics Helping Long-Haul Patients?

Katy McLean just wants to go for walks again, or do the dishes. 

But as a result of her now 10-month battle with post-viral COVID-19 symptoms, both activities are outside her range of movement. Like other long haulers, McLean often finds herself bedridden while fighting off cycles of fatigue, brain fog, headaches, and a high heart rate, among other symptoms.

“Simple things that we take for granted, they become impossible,” McLean tells Verywell. “Even things like taking a shower and washing my hair will take so much out of me that I have to lay down after.”

McLean remains primarily housebound, if not bedbound, in her home in Vancouver, Canada, where she also visits a post-COVID care clinic, she adds. She was referred to the clinic in November 2020, when her symptoms didn’t go away two months after her initial diagnosis with COVID-19.

“I have been lucky in terms of having supportive care. However, I think at this point there's just not enough known in terms of treatment, and patients are pretty desperate to kind of get any quality of life back,” McLean says.

Prior to her admission, she was given two referrals—one by her general provider and another from an emergency room she had visited during a relapse. She then underwent an initial phone consultation, during which she completed surveys that determined which specialists at the clinic could treat her symptoms. The process was followed by an in-person consultation complete with medical tests and initial meetings with the specialists.

Outside of Medical Treatment, Long Haulers Care for Themselves

McLean now visits the clinic every couple months for appointments with two neurologists, a physiatrist, and a physiotherapist. She is unable to work and is on disability benefits. Outside of her treatment, she spends a large chunk of her time caring for herself.

She says one of the most helpful tools she’s learned in her clinic is how to “pace” herself to manage symptoms on her own. Pacing is a tool used by members of the chronic pain community to monitor their energy levels to limit flares and fatigue.

“If all I can do in a day is take a shower, watch a TV show and have one 15-minute phone conversation, then I have to stay within those energy parameters,” McLean says. “Otherwise there's a price to pay—and it’s symptom relapse.”

Even on low energy days, she records her symptoms in a day timer, tracking data like sleep patterns, heart rate, and energy levels. The day timer serves as a guide to help pace herself throughout the day. 

“The idea is to avoid the crash and push cycle because that can actually deteriorate you further overtime,” she adds.

Difficult Access to Long COVID Clinics

Ashley McLaughlin spent five months trying to get placed in a post-COVID care clinic in Pennsylvania before giving up and moving to Colorado.

She was initially barred from entering because she was a New Jersey resident. She then worked to get referrals from her doctors in Maryland, where she previously attended college. By the time the clinic offered her a spot, she had already finalized moving plans.

Relocating from New Jersey to Colorado wouldn’t cure her long COVID symptoms, but the less humid environment was easier on her body, she says. Besides, her hometown doctors were not offering her the support she felt she needed anyway.

“I really wanted to get into the post COVID clinic because all the doctors are going to believe you, so they're going to actually treat you like they believe you,” McLaughlin says.

Additionally, specialists in the clinic could work together to provide her with a more comprehensive, holistic treatment, she adds. Previous physicians dismissed McLaughlin’s symptoms as anxiety and some went so far as to tell her that she would feel better if she just got a boyfriend.

This type of dismissive reaction to chronic pain is not uncommon, Peter Staats, MD, MBA, medical advisor for Survivor Corps and President of the World Institute of Pain, tells Verywell. 

To better treat and validate the concerns of patients dealing with chronic pain, Staats founded the pain medicine division - Johns Hopkins Blaustein Pain Treatment Center - at Johns Hopkins University in 1994. When he first launched the program, almost every patient with chronic pain was dismissed by their primary care doctors and surgeons as “malingerers, or weak personalities, or fakers, or drug seekers,” he says.

“I frankly see history repeating itself with [long COVID] where the doctors don't understand what's going on with the patients,” Staats says. 

When working with long COVID patients, he likewise tries to validate their concerns even though not all the answers to diagnosis and treatment are available, he adds. 

How Are the Clinics Helping?

Given the various unknowns about how to diagnose and treat long COVID, physicians at post-COVID care clinics are tasked with a two-fold challenge: how to treat each individual patient and devise a future, longer lasting solution.

“Every doctor's goal should be to go in and take care of that patient sitting in front of them and give them their full and undivided attention,” Staats says. “Having said that, we don't have all the answers today. Part of helping [the patient] right in front of us is going to be developing randomized controlled trials or post prospective trials to help others.”

At her current clinic in Vancouver, McLean is participating in an optional research study to help further research on long COVID.

“They're looking for anything that could be a pre-determining factor for long COVID,” she says of the study she is involved in. “They're trying to, kind of, unlock the mysteries of it.”

While post-COVID care clinics may be an essential part in treating and developing treatments for the condition, not all facilities are up to standards, Staats says. 

“Sometimes the physicians are exquisitely well trained, and then sometimes they're the last man or woman standing,” Staats says. 

Finding Common Ground

People with long COVID experience a range of physical symptoms, from intense fatigue to loss of hair. But researchers have found consistencies in the immune responses among patients with long COVID. Notably, long COVID patients can experience higher levels of vascular inflammation than people with acute COVID.

Bruce Patterson, MD, a pathologist and virologist, led two recent machine-learning studies that presented the first model for diagnosing and treating long COVID.

“What we figured out is long haulers were a completely separate unique immunologic entity from acute COVID,” Patterson tells Verywell. 

Targeting this inflammation is important in treating the condition, Staats says. He worked on a product called gammaCore, which stimulates the vagus nerve to reduce inflammation in people with long COVID or other chronic diseases.

Patterson’s team also found that this inflammation was caused by a specific SARS-CoV-2 S1 protein that continually stimulates the person’s immune system. The protein is found in a type of cell that migrates throughout the body and is stimulated by exercise—an explanation for the chronic fatigue experienced by many people with long COVID.

The studies may help researchers develop a long-term treatment strategy for long COVID, not just symptoms, and ensure that the patients’ concerns are heard by their doctors, Patterson adds. 

“Now we have strategic ways using precision medicine to treat [long COVID patients],” Patterson says. “We are listening, and we are here for you.”

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.