Let patients help define long-lasting COVID-19 symptoms: Nature magazine

The terminology for long-lasting COVID-19 symptoms and the definition of recovery must incorporate patients' perspectives, Nature magazine advised in a report published on Wednesday. 

Scientists have found that some patients are left struggling with symptoms including crushing fatigue, lung damage, persistent pain and breathlessness for months after contracting SARS-CoV-2, the coronavirus that leads to the disease. Breathlessness and fatigue are the ongoing and debilitating symptoms being reported by COVID-19 patients, even long after testing negative for the disease.

At present, researchers, clinicians and those battling COVID-19 are urging to use the term "long COVID" to refer to related symptoms while giving utmost consideration to patients' perspectives, although negotiations on giving a name to these symptoms are still underway. The existing COVID-19 lexicon includes terms like "post-COVID-19 syndrome" and "chronic COVID-19."

The exact definition of "recovery" is also being debated. Many argue that a negative test result does not necessarily guarantee "recovery." "People's symptoms should be considered too, such as heaviness, breathlessness, muscle pains, palpitations and fatigue," Nisreen Alwan, a public-health researcher at the University of Southampton, UK wrote in a World View article in August, considering people are facing insidious long-term consequences of the disease.

Felicity Callard, a human geographer at the University of Glasgow, UK emphasized that it is imperative to reach an agreement on the appropriate terminology for "long COVID."  Both Alwan and Callard have experienced long COVID, and they argue that words such as "post," "syndrome," and "chronic" risk delegitimizing patients' suffering, which will make it harder for them to get required care.

The World Health Organization (WHO) is keeping an eye on the discourse and related developments.