#MeAction Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID activists protested to address the crisis in the country with post-viral diseases. For the past four decades, considerable work in laboratories around the world had occurred with ME/CFS, and there are many lessons those battling the current pandemic can learn from their research.
Although some long COVID symptoms are unique, such as hair loss, the majority of symptoms experienced by those with ME/CFS and long COVID are comparable. Most patients with ME/CFS also had a viral infection at the onset. Given the similarities in these two illnesses, we might have an idea of the prognosis of those diagnosed with long COVID by inspecting what has occurred over time with ME/CFS. We do know that the percentage of adults and youth with severe symptoms of these various infections is initially high, and then tends to decrease over time. As an example, Hickie et al. (2006) launched a prospective study following adult patients from the time of acute infection with Epstein-Barr virus (glandular fever), Coxiella burnetii (Q fever), or Ross River virus (epidemic polyarthritis). The occurrence of post-infective fatigue syndrome decreased over time: 35% at six weeks, 27% at three months, 12% at six months, and 9% at 12 months. Decreases in ME/CFS have also occurred in pediatric samples, such as Katz et al.’s (2009) investigation of youth following Infectious Mononucleosis. We might therefore expect decreases in symptoms for those with long COVID, but among those who do not recover, it is important not to question the legitimacy of patients’ persisting symptoms, as this trauma has occurred far too often among those with ME/CFS.