Lessons from Long COVID: working with patients to design better research

Alwan, Nisreen A.

doi:10.1038/s41577-022-00692-6

Cited by 27 publications

(24 citation statements)

References 10 publications

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“…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.…”

Section: Methodsmentioning

confidence: 99%

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

Ayoubkhani

Bermingham

Pouwels

et al. 2022

BMJ

294

244

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Objective To estimate associations between covid-19 vaccination and long covid symptoms in adults with SARS-CoV-2 infection before vaccination. Design Observational cohort study. Setting Community dwelling population, UK. Participants 28 356 participants in the Office for National Statistics COVID-19 Infection Survey aged 18-69 years who received at least one dose of an adenovirus vector or mRNA covid-19 vaccine after testing positive for SARS-CoV-2 infection. Main outcome measure Presence of long covid symptoms at least 12 weeks after infection over the follow-up period 3 February to 5 September 2021. Results Mean age of participants was 46 years, 55.6% (n=15 760) were women, and 88.7% (n=25 141) were of white ethnicity. Median follow-up was 141 days from first vaccination (among all participants) and 67 days from second vaccination (83.8% of participants). 6729 participants (23.7%) reported long covid symptoms of any severity at least once during follow-up. A first vaccine dose was associated with an initial 12.8% decrease (95% confidence interval −18.6% to −6.6%, P<0.001) in the odds of long covid, with subsequent data compatible with both increases and decreases in the trajectory (0.3% per week, 95% confidence interval −0.6% to 1.2% per week, P=0.51). A second dose was associated with an initial 8.8% decrease (95% confidence interval −14.1% to −3.1%, P=0.003) in the odds of long covid, with a subsequent decrease by 0.8% per week (−1.2% to −0.4% per week, P<0.001). Heterogeneity was not found in associations between vaccination and long covid by sociodemographic characteristics, health status, hospital admission with acute covid-19, vaccine type (adenovirus vector or mRNA), or duration from SARS-CoV-2 infection to vaccination. Conclusions The likelihood of long covid symptoms was observed to decrease after covid-19 vaccination and evidence suggested sustained improvement after a second dose, at least over the median follow-up of 67 days. Vaccination may contribute to a reduction in the population health burden of long covid, although longer follow-up is needed.

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Section: Methodsmentioning

confidence: 99%

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

Ayoubkhani

Bermingham

Pouwels

et al. 2022

BMJ

294

244

View full text Add to dashboard Cite

show abstract

“…The frightening speed at which Covid‐19 took hold in 2019/2020 called for immediate action to minimize infections and deaths, yet an acute disaster response, as seen in the United Kingdom (UK), inadvertently created ‘Covid's paradox’ 2 . Despite there being numerous examples of the devastating long‐lasting effects of other viruses, including Covid‐19's predecessor severe acute respiratory syndrome, 3 the notion of Long Covid was initially entirely dismissed and not counted 4,5 . Changes introduced to the UK's healthcare systems to respond to Covid‐19 paradoxically made the system less fit for the purpose of managing what has been called a ‘mass disabling event’ in the emergence of Long Covid 6 .…”

Section: Introductionmentioning

confidence: 99%

“… 2 Despite there being numerous examples of the devastating long‐lasting effects of other viruses, including Covid‐19's predecessor severe acute respiratory syndrome, 3 the notion of Long Covid was initially entirely dismissed and not counted. 4 , 5 Changes introduced to the UK's healthcare systems to respond to Covid‐19 paradoxically made the system less fit for the purpose of managing what has been called a ‘mass disabling event’ in the emergence of Long Covid. 6 Long Covid is a patient made term used to describe symptoms that persist beyond the initial illness.…”

Section: Introductionmentioning

confidence: 99%

Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community

Ireson

Hancock

Richardson³

et al. 2022

Health Expectations

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Background: In 2020, the long-lasting effects of the Covid-19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life-changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid.Methods: Unlike any previous pandemic in history, online Covid communities and 'citizen science' have played a leading role in advancing our understanding of Long Covid. As patient-led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19-recovery.org at the beginning of the Covid-19 pandemic between April and September 2020. Results:The overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the lifechanging impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option.Conclusions: Long Covid does not easily fit into the dominant evidence-based

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“…Accordingly, systems that measure recovery and continued illness following SARS-CoV-2 or other viral infection are needed as well as defining and frequently updating clinical case definitions. Without it, people living with long COVID may have considerable barriers in patient healthcare, social care, employment, or financial benefits [ 286 , 287 ].…”

Section: Discussionmentioning

confidence: 99%

Virus Infection and Systemic Inflammation: Lessons Learnt from COVID-19 and Beyond

Faist

Janowski

Kumar

et al. 2022

Cells

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Respiratory infections with newly emerging zoonotic viruses such as SARS-CoV-2, the etiological agent of COVID-19, often lead to the perturbation of the human innate and adaptive immune responses causing severe disease with high mortality. The responsible mechanisms are commonly virus-specific and often include either over-activated or delayed local interferon responses, which facilitate efficient viral replication in the primary target organ, systemic viral spread, and rapid onset of organ-specific and harmful inflammatory responses. Despite the distinct replication strategies, human infections with SARS-CoV-2 and highly pathogenic avian influenza viruses demonstrate remarkable similarities and differences regarding the mechanisms of immune induction, disease dynamics, as well as the long-term sequelae, which will be discussed in this review. In addition, we will highlight some important lessons about the effectiveness of antiviral and immunomodulatory therapeutic strategies that this pandemic has taught us.

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Lessons from Long COVID: working with patients to design better research

Cited by 27 publications

References 10 publications

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

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

Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community

Virus Infection and Systemic Inflammation: Lessons Learnt from COVID-19 and Beyond

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