Based on experience with past coronaviruses, the emerging challenge of prolonged symptoms after infection with the novel coronavirus 2019 (SARS-CoV-2) is unsurprising. Data from a large international web-based patient survey indicate substantial symptom overlap between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at 6 months following the onset of first symptoms, including three quarters of participants suffering from fatigue and postexertional malaise, and over half with cognitive dysfunction.4 Apparent similarities between the presentations of long COVID and ME/CFS suggest that we may apply what we have learned from ME/CFS to long COVID.
Avoid the Tower of Babel Phenomenon
The biblical parable of the Tower of Babel cautions that the pursuit of truth may lead to the inability to communicate. Although case definition criteria appear to have become more specific over time, the various names for and definitions of ME/CFS have created confusion and consternation in the patient and clinical communities. Already, several different labels for long COVID exist, even while optimal diagnostic criteria remain unclear. The consensus of the patient community has coalesced around referring to their experiences as “long COVID” and to themselves as “long haulers.” The clinical and research communities should honor the patient perspective by using this label to avoid alienating the patient community and creating confusion. Patients ultimately own and derive meaning from their diagnostic label, not any single area of clinical and scientific endeavor.
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