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The Role of Patients and Patient Activism in the Development of Long COVID Policy

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McClymont, Gabrielle 


The COVID-19 pandemic has focused on the acute respiratory phase of SARS-CoV-2 infection which has killed over three million people globally [1]. Attention is now increasing on the serious long-term, multi-organ illness occurring after COVID-19 infection: Long Covid. Long Covid symptoms include: extreme fatigue; insomnia; headaches; lung, kidney and cardiac damage; and muscle and joint pain. These debilitating symptoms affect individuals who have had both mild and severe acute COVID-19 and are estimated to affect five million people globally. Long Covid awareness originated from Long Covid patients, known as long haulers, finding each other on social media and support groups. Long hauler patient activism has been the driving force behind Long Covid recognition, research and health policy development. Two support groups have played key roles: The Body Politic COVID-19 Support Group and The Long Covid Patient Support Group. These bodies have raised awareness of Long Covid in the media, and in academic and medical communities. They have also provided support for long haulers. The Body Politic COVID-19 Support Group produced a patient-led research report which catalysed research policy for Long Covid. Peer-reviewed research has revealed a diverse array of severe, multi-organ symptoms of Long Covid and has recommended a multi-disciplinary healthcare approach to Long Covid. This recommendation has been adopted by various governments and medical institutions, which have opened Long Covid clinics. Population morbidity from Long Covid is a rising challenge, requiring research, a multi-disciplinary healthcare approach and socio-economic support.



Long Covid, COVID-19, Patient Activism, Research Policy

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Cambridge Journal of Science and Policy

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CUSPE (Cambridge University Science and Policy Exchange)

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