This is What We Know About Long-Haul COVID-19 Survivors

Well into the second year of the COVID-19 pandemic, news coverage of excitement over the vaccines has been eclipsed by coverage of the Delta variant, a mutation of the pathogen that, according to the Centers for Disease Control and Prevention, is more infectious and more easily transmissible than the original coronavirus. Those sick with Delta, however, are not the only group still suffering from COVID.

The health care system is also dealing with patients known as “long-haulers”—those who contracted and survived the coronavirus, but are still ill with symptoms, often debilitating ones, months after the acute phase of the disease has passed.

Who Are Long-Haulers?

Of those patients who survive coronavirus, about 10% become long-haulers, says a September article in the Journal of the American Medical Association.

Symptoms of this post-viral syndrome, also referred to as long COVID, include profound fatigue, intolerance for exercise and other activity, shortness of breath, body and joint pain, cardiovascular problems, chest pain, chills and sweats, brain fog, headaches, gastrointestinal issues, coughing, lingering loss of taste and smell, and many others.

Rafael Salazar, MHS, OTR/L
Rafael Salazar, MHS, OTR/L

Often long-haulers’ fatigue and pain can be on par with that experienced by people with chronic fatigue syndrome or fibromyalgia, Rafael Salazar, MHS, OTR/L, CEO and president of ProActive Rehabilitation & Wellness in Augusta, Georgia, told MASSAGE Magazine. Pain can be so intense, said Salazar, that patients can’t even tolerate being in a swimming pool or taking a shower; fatigue can leave sufferers unable to get out of bed.

While some long COVID symptoms are merely bothersome, others might potentially result in long-term or permanent disability.

Noah Greenspan, DPT, CCS, EMT-B
Noah Greenspan, DPT, CCS, EMT-B

Noah Greenspan, DPT, CCS, EMT-B, a cardiopulmonary physical therapist who works with long-haulers in the Covid-Rehabilitation and Recovery Clinic at H&D Physical Therapy in New York, New York, emphasizes that long-hauler symptoms vary highly from person to person, and that knowledge about long-haulers will continue to shift and change now that most acutely ill COVID patients are suffering with the Delta variant of the virus.

“Long-haulers are an extremely diverse population of patients from patient to patient, as well as within individual long-haulers from month to month, week to week and often, even over the course of the same day,” said Greenspan. “It is still relatively early in Delta’s course. A huge number of long-haulers were first infected during the very early months of February through May of 2020 when much less was known about the acute management of COVID. Although the variants are still inflammation-based, we won’t know what the long-term impact of Delta will be for a while.”

Clinical observation suggests long-haul symptoms could even persist over a course of years, said Salazar. “One to two years post-infection, some of these people could still have decreased physical function and memory impairment,” he noted. They can also develop long-term psychological issues as a result of having had the disease, such as anxiety, depression, panic attacks, post-traumatic stress disorder and other mental conditions.

In extreme cases, such conditions can even interfere with treatment for long COVID problems. For example, Salazar has encountered patients “who’ve had debilitating anxiety, unable to make appointments, to maintain employment, to follow up with health care providers because of the anxiety that they’re having.”

What Do Long-Haulers Look Like in Session?

As a massage therapist, you may encounter COVID long-haulers on your table, but often their symptoms will not be obvious, or consistent among individuals; you should incorporate relevant questions into your intake process so you can tailor treatments accordingly.

While you may recognize symptoms that seem identical to those of other conditions, such as certain types of pain, realize that the mechanism of those symptoms may be different with COVID than when they present as part of other musculoskeletal conditions. You should go slowly and err on the side of under-treatment rather than trying to do too much, as long-haulers can easily become exhausted by daily activities, including those meant to be relaxing like massage therapy.

“Many long-haulers can feel fine during an activity or treatment, only to be completely wiped out afterwards or the next day. This can include fatigue but also a full-blown flare of all symptoms,” Greenspan said. “For that reason, take baby steps with respect to frequency, intensity, duration and type of treatment offered. Allow more rest days in between treatment, don’t push as hard, keep treatments very short at the beginning and build up a minute or two at a time until you have a sense as to how the patient will respond.

“In other words, throw a tiny pebble, wait for the pool to ripple and wait for the pool to become still again before proceeding; and again, when you do proceed, do so with caution.”

Community and the Future of Research

“As more and more people survived COVID and started dealing with long-hauler symptoms, they encountered a health care system that understood very little about the coronavirus itself, much less what the long-term effects might be,” said Greenspan. “For this reason, many sought support from each other, forming support groups online and in their communities.”

Diana Berrent, founder of a large support group for long-haulers, Survivor Corps, notes that statistically, long-haulers are considered to have recovered, when they actually are still ill. This should start to change as the health care industry learns more about the aftereffects of COVID, especially as more patients survive the Delta variant and begin dealing with long-haul symptoms that may be specific to that strain, said Greenspan.

In the early days of COVID, “these groups provided emotional support, shared knowledge and experiences, and a sense of community,” he said. “Over time, it became these grassroots efforts that were driving the health care system, both with respect to treatment and research. In fact, much of the early information came directly from patient-driven online surveys. Now, patients and patient-led groups are regularly sought out as collaborators in care and partners in research.”

Barbara Gosse
Barbara Gosse

Research from China is showing some promise for the treatment of long COVID with traditional Chinese medicine, said Barbara Gosse, an acupuncture and Chinese medicine expert with Northwestern Health Sciences University. “Complementary and integrative health care (CIH), specifically acupuncture, is uniquely qualified to support patients experiencing COVID-19 long-haul symptoms,” she said. “Patients typically present with fatigue, fever, brain fog, pain and immune problems. Acupuncture can help alleviate these symptoms through a careful assessment that utilizes Traditional Chinese Medicine (TCM) theory to diagnose and treat the patient.”

Another piece of research emphasizes that the clinical presentation, and thus the treatment, of long COVID will continue to develop and change as more people get and survive acute infection with current and future variants.

“The future for COVID-19 survivors remains uncertain, and if this virus circulates among us for years to come, long-term effects may accumulate exponentially,” noted its abstract.

Moving Forward

Berrent, the founder of Survivor Corps, underscores the continued importance of staying vigilant in the fight against contracting COVID in the first place. In an August webinar, she explained that statistics about severe cases of COVID may be skewed by the fact that anyone who is sick but not hospitalized is classified as a “mild” case, though they may still suffer pneumonia and other life-threatening symptoms.

Berrent encourages everyone to get vaccinated and to continue wearing a mask even after vaccination, because there’s still a chance you can infect others, or catch COVID yourself, once you’ve had the vaccine—and reminds us that any instance of COVID, no matter how young and healthy you are, is potentially deadly.

“There is no such thing as a mild case of COVID,” Berrent said. “And the best way to not get long COVID is to not get COVID.”

About the Author:

Covid19, LongHaul, Survivors ⋆ This is What We Know About Long-Haul COVID-19 Survivors

Allison M. Payne is an independent writer, editor and proofreader based in central Florida. Her articles for MASSAGE Magazine include “MTs Ask: What is Asymptomatic Transmission of Coronavirus and What Does it Mean for My Practice?” and “COVID-19 Long Haulers Puzzle Health Experts.”


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