The teachings of Long COVID

Abstract

Long COVID is prolonged illness resulting from SARS-CoV-2 infection. Its serious implications for individuals and society have been missing from public communication and pandemic policy. Here, I draw on my lived experience, research, and advocacy work with Long COVID and reflect on the lessons learnt.Long COVID is the state of not recovering several weeks following acute infection with SARS-CoV-2, whether tested or not 1 . It is a patient-made 2 umbrella term for this condition, which may involve multiple pathologies. The underlying mechanisms are still largely unknown, but hypotheses include inflammatory or autoimmune processes, organ damage and scarring, hypercoagulability, endothelial damage, or even persistent viral protein in the body 3,4 . Based on the UK Office for National Statistics (ONS) estimates, the prevalence of Long COVID is around 1 in 7 people at three months from the infection, and it is most common in working-age adults, but also occurs in other age groups, including children 5 . More recent ONS figures indicate that there are 376,000 people in the UK who have had Long COVID for at least one year 6 . It has a wide range of symptoms, but the most common are exhaustion, breathlessness, muscle aches, cognitive dysfunction, including poor memory and difficulty concentrating, headache, palpitations, dizziness and chest tightness or heaviness. The nature of the symptoms is mostly relapsing, resulting in significant dysfunction and limitations in a relatively large proportion of sufferers 6,7 .During the past year, I have been advocating for Long COVID, as well as doing research on it. I experienced it after developing COVID-19 symptoms in March 2020. My acute illness was not severe, so I did not go to hospital, as the medical advice at the time was to isolate at home, and that, like flulike illness, one would be completely recovered within a week or two. This also meant I did not have access to testing to confirm infection, as community testing stopped in the UK on March 12, 2020 8 . Although I felt improvements, the illness did not go away after several weeks. Some of my symptoms, the chest heaviness, muscle aches, and fatigue, remained fluctuating for months, while new symptoms, such as palpitations, also appeared. Every time I felt it was almost over, symptoms came back. I started recognising and avoiding some of the activities that triggered the symptoms, but I could not always work out what caused the relapses.The constant cycle of disappointment at not completely recovering was devastating. The never-ending symptoms and their effect on my daily activities were a cause for worry. It was somewhat reassuring that so many others were posting similar stories on social media, but it was a struggle to get Long COVID recognised by governments and national health agencies as a serious problem back then. It seemed nobody had thought about the enormous implications of chronic disease as a result of letting SARS-CoV-2 spread through the community, assuming it would all be fine for those classed as non-vuln...

Characteristics and impact of Long Covid: Findings from an online survey

“…It was important for us to ask the questions that reflect the main areas of concerns expressed by pwLC. NAA experienced Long Covid Symptoms and has been a strong advocate of the recognition and measurement of the condition [ 34 , 35 ]. MEO and CH, as well as experiencing Long Covid themselves, have a wide overview of the symptoms, disability, disease course and concerns as expressed in the support groups and other national forums given their extensive involvement in Long Covid advocacy.…”

Trajectory of long covid symptoms after covid-19 vaccination: community based cohort study

“…She has also written on patient involvement in long covid research and the lessons learnt that could apply to other conditions. 32 33 She contributed to informing this analysis’s concept, design, and interpretation.…”

Development and validation of the symptom burden questionnaire for long covid (SBQ-LC): Rasch analysis

“…Validated instruments to measure patient reported outcomes have recently been developed to measure the global impact of long covid, and several unvalidated screening tools, surveys, and questionnaires are also available 1920. However, individuals living with long covid have suggested that existing self-report measures fail to capture the breadth of experienced symptoms 102122. To address the need for a comprehensive measure of self-reported symptom burden specific to long covid, we used Rasch analysis to develop and validate, in accordance with US Food and Drug Administration guidance, a novel instrument measuring patient reported outcomes, the symptom burden questionnaire for long covid (SBQ-LC) 1523…”