There is emerging evidence that many individuals who were infected with the novel coronavirus, which causes the COVID-19 disease, are suffering with persistent symptoms – the “long-haulers”.
To better understand the reasons behind this, 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.
Have you had COVID-19?
We have adopted a collaborative approach to understand longhaul Covid, and have begun work to establish the first Global Long Covid Data Coalition. We are establishing partnerships with others who are collecting data on individuals who’ve had COVID-19, centered around the concept of data harmonization. By agreeing to capture similar information on these individuals, we can later collate our data and amass enough information to see a clearer picture of the causes of these long-term effects. We are also offering our registry infrastructure and access to our symptom tracking app to anyone who is interested in using it as a mechanism to easily collect longitudinal data.
The pandemic offers an opportunity to understand susceptibility or resilience to these long-term effects, and we may well also shed light on ME/CFS and post-infectious fatigue syndromes following infections other than COVID-19.