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February 22, 2022
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The evolving role of the rheumatologist in long COVID

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At this point in the pandemic, I am once again unsure of what the future will look like, save for two predictions. One (as I have recently been tweeting) is that COVID-19, in some form, will remain an endemic infection and prevalent risk for the immunocompromised.

Like it or not, we rheumatologists will need to develop clinical expertise to manage outpatient COVID-19 and network with systems designed to treat our vulnerable patients with evolving therapies. The second point of certainty is that we, as a community of specialists and as individual practitioners, are going to have to come to grips with long COVID.

Source: Adobe Stock.
Source: Adobe Stock.

At present, long COVID is a disease or syndrome without a universally accepted definition, nor any diagnostic biomarkers, which in combination clearly pose a host of formidable challenges. In its simplest form, long COVID is recognized by the persistence, new-onset or recrudescence, of any one of many signs and symptoms after COVID-19 for a prolonged period — usually at least 4 to 12 weeks, although some patients may experience symptoms for 6-12 months.

It is a disorder with more than 50 described symptoms but dominated by problems familiar to our field, including fatigue, musculoskeletal pain and brain fog, as well as more focal complaints such as breathlessness, tachycardia, sleep disturbances and anxiety. For those of us who have seen these patients there are striking resemblances to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disorder that has long been marginalized in academic circles but now appears to have been given gravitas in light of its many similarities with long COVID.

For now, I am merely providing a 30,000-foot view of this disorder, which is easier to merely describe than to understand pathogenetically. One final thing is certain about long COVID, and that is the burden of this disorder is likely to be staggering upon our health care system. Now, in light of the omicron surge, epidemiologic estimates suggest that perhaps more than 150 million people have been infected (including undiagnosed cases) and conservatively 10% to 15% or more may be at risk for some form of long COVID.

Leonard H. Calabrese, DO
Leonard H. Calabrese

As for the role of rheumatologists in dealing with this mysterious disorder, I see two significant opportunities. One is lending our expertise to the research effort to begin to understand it, and the second is clinically engaging with forms of long COVID arising in our own patients, as well as those with prominent rheumatic features.

The cause of long COVID is unknown, but it is clearly heterogeneous and probably represents multiple endotypes. On the therapeutic front, there are already more than 600 clinical trials registered on ClinicalTrials.gov, including an array of integrative-medicine approaches and several immunomodulatory agents, including interleukin-6 inhibition, suggesting autoimmunity and/or immune activation may belie some of its core symptoms.

In addition, it has already been noted that there are more than a few similarities between long COVID and fibromyalgia, another poorly understood but formidable condition. As rheumatologists, we know all too well that fibromyalgia is a condition without any quick fixes.

I am not trying to drag any of us into the long COVID effort unwillingly, but given the fact that it is now a national research priority with more than $1 billion earmarked, we can also hope that progress made in understanding long COVID, and the effects of immunomodulatory and integrative-medicine therapies in rigorous clinical trials, will spin off benefits for patients with fibromyalgia, ME/CFS and other poorly understood disorders that are often stressful for both patients and practitioners.

I close by counseling that, in the absence of any evidence-based therapies for the moment, keeping an open mind and demonstrating empathy as opposed to doubt or recrimination is always the place to start, as I believe rheumatologists already know. Consider this merely an opening message about long COVID and rheumatology for 2022.

Share your own take on how long COVID may continue to shape rheumatology practice with us at calabrl@ccf.org or at rheumatology@healio.com.