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Why the patient-made term 'Long Covid' is needed [version 1; peer review: awaiting peer review]

Why the patient-made term 'Long Covid' is needed [version 1; peer review: awaiting peer review]
Why the patient-made term 'Long Covid' is needed [version 1; peer review: awaiting peer review]
The patient-made term ‘Long Covid’ is, we argue, a helpful and capacious term that is needed to address key medical, epidemiological and socio-political challenges posed by diverse symptoms persisting beyond four weeks after symptom onset suggestive of coronavirus disease 2019 (COVID-19). An international movement of patients (which includes all six authors) brought the persistence and heterogeneity of long-term symptoms to widespread visibility. The same grassroots movement introduced the term ‘Long Covid’ (and the cognate term ‘long-haulers’) to intervene in relation to widespread assumptions about disease severity and duration. Persistent symptoms following severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection are now one of the most pressing clinical and public health phenomena to address: their cause(s) is/are unknown, their effects can be debilitating, and the percentage of patients affected is unclear, though likely significant. The term ‘Long Covid’ is now used in scientific literature, the media, and in interactions with the WHO. Uncertainty regarding its value and meaning, however, remains. In this Open Letter, we explain the advantages of the term ‘Long Covid’ and bring clarity to some pressing issues of use and definition. We also point to the importance of centring patient experience and expertise in relation to ‘Long Covid’ research, as well as the provision of care and rehabilitation.
Keywords
2398-502X
Perego, Elisa
dd250510-b5d5-4cf4-a44e-022db86ec881
Callard, Felicity
f6305827-ea18-4af5-b13b-0fef099d19b7
Stras, Laurie
b1021221-b68d-4a48-bf3c-890e5a63438a
Melville-Johannesson, Barbara
f7dd34c7-51b6-495f-bede-3fca0ebbc02c
Pope, Rachel
b42fab6b-a305-48ed-bd5c-6941e888d56d
Alwan, Nisreen
0d37b320-f325-4ed3-ba51-0fe2866d5382
Perego, Elisa
dd250510-b5d5-4cf4-a44e-022db86ec881
Callard, Felicity
f6305827-ea18-4af5-b13b-0fef099d19b7
Stras, Laurie
b1021221-b68d-4a48-bf3c-890e5a63438a
Melville-Johannesson, Barbara
f7dd34c7-51b6-495f-bede-3fca0ebbc02c
Pope, Rachel
b42fab6b-a305-48ed-bd5c-6941e888d56d
Alwan, Nisreen
0d37b320-f325-4ed3-ba51-0fe2866d5382

Perego, Elisa, Callard, Felicity, Stras, Laurie, Melville-Johannesson, Barbara, Pope, Rachel and Alwan, Nisreen (2020) Why the patient-made term 'Long Covid' is needed [version 1; peer review: awaiting peer review]. Wellcome Open Research, 5, [224]. (doi:10.12688/wellcomeopenres.16307.1).

Record type: Letter

Abstract

The patient-made term ‘Long Covid’ is, we argue, a helpful and capacious term that is needed to address key medical, epidemiological and socio-political challenges posed by diverse symptoms persisting beyond four weeks after symptom onset suggestive of coronavirus disease 2019 (COVID-19). An international movement of patients (which includes all six authors) brought the persistence and heterogeneity of long-term symptoms to widespread visibility. The same grassroots movement introduced the term ‘Long Covid’ (and the cognate term ‘long-haulers’) to intervene in relation to widespread assumptions about disease severity and duration. Persistent symptoms following severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection are now one of the most pressing clinical and public health phenomena to address: their cause(s) is/are unknown, their effects can be debilitating, and the percentage of patients affected is unclear, though likely significant. The term ‘Long Covid’ is now used in scientific literature, the media, and in interactions with the WHO. Uncertainty regarding its value and meaning, however, remains. In this Open Letter, we explain the advantages of the term ‘Long Covid’ and bring clarity to some pressing issues of use and definition. We also point to the importance of centring patient experience and expertise in relation to ‘Long Covid’ research, as well as the provision of care and rehabilitation.
Keywords

Text
11db4698-9cd5-4fa6-9e64-566c7f9c6fbf 16307 felicity callard - Version of Record
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Published date: 24 September 2020

Identifiers

Local EPrints ID: 444187
URI: http://eprints.soton.ac.uk/id/eprint/444187
ISSN: 2398-502X
PURE UUID: 58771552-dc9e-4cf2-8e0a-ea06e575ec90
ORCID for Laurie Stras: ORCID iD orcid.org/0000-0002-0129-2047
ORCID for Nisreen Alwan: ORCID iD orcid.org/0000-0002-4134-8463

Catalogue record

Date deposited: 30 Sep 2020 17:04
Last modified: 13 Dec 2021 03:15

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Contributors

Author: Elisa Perego
Author: Felicity Callard
Author: Laurie Stras ORCID iD
Author: Barbara Melville-Johannesson
Author: Rachel Pope
Author: Nisreen Alwan ORCID iD

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