‘Starting point’ for long COVID management should be treating symptoms, empathy
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SCOTTSDALE, Ariz. — In the absence of approved long COVID therapies, rheumatologists are encouraged to treat the symptoms and “listen empathically,” noted a presenter at the Basic and Clinical Immunology for the Busy Clinician symposium.
“This is an incredibly complex, controversial, evolving part of the pandemic,” Leonard Calabrese, DO, RJ Fasenmyer Chair of Clinical Immunology at the Cleveland Clinic, and chief medical editor of Healio Rheumatology, told attendees at the hybrid meeting. “The next phase of the pandemic will be about long COVID.”
He added that perhaps the most challenging and controversial aspect of long COVID is that it can occur not only in patients who have experienced severe or moderate acute infection, but also in those who had a mild or even asymptomatic case.
“That has been the challenging part of this,” Calabrese said.
So far, the most commonly reported symptoms of long COVID have been fatigue, breathlessness and neurocognitive complaints.
“We as rheumatologists know these symptoms well,” Calabrese said.
However, if these were the only concerns associated with the condition, the current situation would be much simpler than it actually is, he added. According to Calabrese, the symptomatology associated with long COVID is in fact “hugely diverse” and may include as many as 50 to 200 complaints.
Meanwhile, no organization has codified these symptoms.
“If you don’t have any classification criteria, what are you measuring?” Calabrese said.
An additional consideration is that the data on epidemiology are similarly variable.
“Data are saying that anywhere between 1% and 50% [of patients who experience acute infection] have long COVID,” Calabrese said. “It’s insane.”
Moreover, because at-home and even PCR COVID tests are “imperfect,” some studies show “variable levels of evidence” that patients with these symptoms even had COVID in the first place, he added.
“It is also important to recognize that post-acute syndromes can be present in other respiratory infections,” Calabrese said.
However, some signals have begun to emerge.
Women are reporting long COVID at twice the rate of men. Individuals older than 40 years, those with poor health prior to infection, and those with severe disease vs. mild disease have also reported higher rates of long COVID. Meanwhile, lower socioeconomic status has additionally been associated with long COVID.
“Social determinants of health need to be further analyzed,” Calabrese said.
Researchers are currently exploring the potential mechanisms of long COVID. These include inflammation, persistent COVID-19 virus, reactivation of other viruses, changes in microbiome, clotting issues and immune responses and autoimmunity, among others. Although so-called “micro-clots” are a cutting-edge theory, Calabrese stated this hypothesis requires more rigorous investigation.
All this data — or lack thereof — lead to one important question, according to Calabrese:
“What do we do about this?”
There are currently no approved therapies for long COVID. There is a “small pipeline” of drugs, including antivirals, metabolomics, anti-cytokine therapies, immunomodulatory drugs and those targeting chemokine receptor type 5 (CCR-5), Calabrese said. However, there are no data yet.
That said, patients with fatigue, many of whom meet criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), may be managed by rheumatology.
“These are patients we know,” Calabrese said.
Similarly, patients with autonomic dysfunction as part of neurocognitive complaints may demonstrate pain and inflammation that is familiar to rheumatologists.
“We should be very interested in this,” Calabrese said. “Rheumatology has a lot of studies of the autonomic nervous system.”
Meanwhile, for patients with cardiopulmonary complaints, he stressed that rheumatologists should consider referral to another specialist.
“It needs to be done by people who know what they are doing,” Calabrese said.
Until targeted drugs are available, Calabrese recommended rheumatologists managing patients with long COVID to start with individual symptoms.
“The starting point of taking care of long COVID is to treat the symptoms, but we also need to hear them empathically,” he said. “Hearing patients and interacting with patients in an empathic way has healing effects.”
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Calabrese L. Long COVID: Current status and challenges. Presented at Basic and Clinical Immunology for the Busy Clinician, Feb. 25-26, 2023; Scottsdale, Arizona (hybrid meeting).
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