For some people with COVID-19, even those who are only mildly affected at first, the ensuing weeks and months of “recovery” bring a surprise and a betrayal: they do not return to full health. Although nucleic acid tests no longer detect the virus, people still suffer from ongoing symptoms. They call themselves “long haulers,” and the condition is being called “long COVID.”
To better understand the reasons why COVID-19 long haulers continue to suffer with persistent symptoms, we are using the You + ME Registry and Biobank to collect data and biological samples from individuals with and without persistent symptoms. We will also compare these data to information from people with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), to characterize similarities and differences between the two groups.
In this webinar, Solve M.E. President & CEO Oved Amitay and Advocacy & Community Relations Director Emily Taylor talk to Howard and Bishof explore how COVID long haulers and the ME/CFS community can join forces for progress in the study, understanding and management of both COVID-19 and ME/CFS.
A study of Covid-19 long haulers may well also shed light on ME/CFS and post-infectious fatigue syndromes following infections other than COVID-19. One major obstacle to understanding the long-term effects of Covid-19 is the lack of available data. The scientific community – public and private – needs to gather as much data as possible while we are still in the early phases of this Covid-19 era.
