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Long COVID guidelines need to reflect lived experience
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Journal Article
Long COVID guidelines need to reflect lived experience
2021
Overview
Since May, 2020,1 increasing attention has been given to the experiences of people with COVID-19 whose symptoms persist for 4 or more weeks. According to the Office for National Statistics (ONS), an estimated 186 000 people (95% CI 153 000–221 000) in private households in England currently have COVID-19 symptoms 5–12 weeks or longer after acute infection.2 The ONS estimate that one in five people have symptoms that persist after 5 weeks, and one in ten have symptoms for 12 weeks or longer after acute COVID-19 infection.2 Research on long COVID is growing, including into the underlying pathology, consequences, and sequelae, as well as rehabilitation for patients. [...]the guideline does not sufficiently describe what is known about the underlying pathology and the natural history of long COVID. [...]in developing the guideline we believe a more thorough participative and open process was needed to consider and determine appropriate terminology by involving a broad range of experts, including people with lived experience.
