My 15-month rollercoaster ride with COVID-19: A social epidemiologist’s perspective

Witvliet, Margot Gage

doi:10.1177/14034948211067682

Cited by 3 publications

(4 citation statements)

References 9 publications

(8 reference statements)

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“…A further consideration is to understand the episodic nature of Long COVID. Participants here reported perceived improvements in symptom severity, often referring to ‘turning a corner’; however, this could change instantaneously and without any provocation in some cases, a finding that has been recognised in other studies 8 13 14 22. It has been suggested that patients with chronic diseases will increase activities when they feel able but with little consideration of the consequences 23.…”

Section: Discussionmentioning

confidence: 58%

“…However, the focus groups were followed up 4–6 months later by email and similarly provide a snapshot summary to that of online surveys. Witvliet 14 retrospectively revealed the details of her personal Long COVID journey which included nuanced details that would not be captured in clinical pathways. This detail could provide important insight to support clinical decision-making but also in the development of Long COVID support pathways that are relevant, accepted and lead to improved patient outcomes.…”

Section: Introductionmentioning

confidence: 99%

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Lived experience of patients with Long COVID: a qualitative study in the UK

et al. 2023

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BackgroundLong COVID is a rapidly evolving global health crisis requiring interdisciplinary support strategies that incorporate the lived experience of patients. Currently, there is a paucity of research documenting the day-to-day experiences of patients living with Long COVID.ObjectiveTo explore the lived experience of Long COVID patients.Study designLongitudinal, observation study.SettingAn inductive, data-driven, qualitative approach was used to evaluate hand-written diaries obtained from individuals who had been referred to a Derbyshire Long COVID clinic.Participants12 participants (11 females, age 49±10 years, 11 Caucasians) were recruited. Participants were included if they had a previous confirmed or suspected COVID-19 infection with ongoing recovery, >18 years old, understood the study requirements and provided informed consent.MethodParticipants were directed to complete self-report diaries over 16 weeks. Responses were transcribed verbatim and analysed using thematic analysis.ResultsThree key themes were highlighted: (1) understanding who helps patients manage symptoms, (2) daily activities and the impact on quality of life and health status and (3) the effect of turbulent and episodic symptom profiles on personal identity and recovery.ConclusionsThe novel challenges presented by Long COVID are complex with varying inter-related factors that are broadly impacting functional status and quality of life. Support mechanisms must incorporate the lived experiences and foster true collaborations between health professionals, patients and researchers to improve patient outcomes.Trial registration numberNCT04649957.

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Section: Discussionmentioning

confidence: 58%

Section: Introductionmentioning

confidence: 99%

Lived experience of patients with Long COVID: a qualitative study in the UK

et al. 2023

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“…The scientific literature will increase in the area of research examining long COVID-19 using self-reports. People who have contacted long COVID-19 have lingering symptoms that are in line with those who have myalgic encephalomyelitis/chronic fatigue syndrome (ME/ CFS) [13]. Given that globally the population of people with long COVID-19 is growing, understanding the nuances of the concept of SRH, and how to utilize the measurement in population health surveys will be critical for global public health now more than ever.…”

Section: Other Self-reported Conditionsmentioning

confidence: 99%

“…Women had a hard time being believed by doctors about their self-reported COVID symptoms lasting longer than expected. Women are also more often diagnosed with long COVID-19 as compared to men [13].…”

Section: The Gender Paradoxmentioning

confidence: 99%

Glossary: Self-Reported Health

Witvliet¹,

Bambra²,

Eikemo³

2022

AustinJPublicHealthEpidemiol

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The inclusion of self-reported health into cross-country population surveys has contributed to substantial progress in the social science, public health and epidemiology fields. Measuring self-reported health in cross-country population surveys is a cost-effective method to gain information on individual-health status. The self-reported health measurement however is not without flaws. In this glossary we provide a basic definition of self-reported health. Cross-country population surveys that contain self-reported health data are discussed. We highlight the limitations and advantages of using self-reported health measure. Other aspects related to self-reported health are discussed, including the importance of the self-reported health measurement for future long COVID-19 investigations.

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How COVID-19 Brought Medical Gaslighting to the Forefront and Made Invisible Illness Visible: Lessons from the BIPOC Long COVID Study

Witvliet¹

2023

COVID-19 Pandemic, Mental Health and Neuroscience - New Scenarios for Understanding and Treatment

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Back in March 2020 I became ill with COVID-19. It almost killed me. My journey with the illness is documented publicly and I am featured in New York Times, USA Today, Washington Post and People Magazine to name a few publications. Health Magazine named me one of seven African American women unsung heroes of COVID-19. Last year in 2021 I was invited to address President Biden’s COVID-19 Task Force Team. In the medical community, there is a pattern of treating people differently based on their gender, sexual orientation, age and disability status. COVID-19 shed light on the need for the medical community to shift to a modern outlook in the treatment of patients with invisible illnesses. In this chapter, I will discuss what is long COVID, findings from the BIPOC Long COVID Study, and how long COVID made invisible illnesses such as chronic fatigue syndrome, fibromyalgia, chronic Lyme disease and lupus visible. Recommendations are given on long COVID recovery.

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My 15-month rollercoaster ride with COVID-19: A social epidemiologist’s perspective

Cited by 3 publications

References 9 publications

Lived experience of patients with Long COVID: a qualitative study in the UK

Lived experience of patients with Long COVID: a qualitative study in the UK

Glossary: Self-Reported Health

How COVID-19 Brought Medical Gaslighting to the Forefront and Made Invisible Illness Visible: Lessons from the BIPOC Long COVID Study

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