As the world moves on from COVID-19, a debilitating long term condition remains for millions of people across the world, disproportionately impacting health and care workers.
LongCovidSOS was established July 2020 to provide a voice for sufferers of Long Covid, a condition that has left over 700,000 people in England and Scotland unwell for over 3 years, with around half that number saying it severely limits their ability to undertake day-to-day activities.
Post-COVID-19 syndrome (12 weeks plus) is a Long Covid diagnosis that reflects symptoms developed after a COVID-19 infection that can continue for 12 weeks or more and cannot be explained by an alternative diagnosis. It usually presents with clusters of symptoms which can change over time and affect any system in the body. Symptoms can include fatigue, pain, allergies and rashes, palpations, breathlessness and sleep disorders, loss of smell and taste.
More research is needed, better treatments are essential, and ultimately medical solutions that prevent Long Covid need to be created. Now is not the time for complacency.
LongCovidSOS’s chief campaigner and Co-Founder Ondine Sherwood, sadly passed away in March 2025. For this small charity to build on Ondine’s work, galvanise its volunteers, advocate for Long Covid sufferers across the UK, respond to government and media enquiries, lobby for and commission research – and maintain pressure on policy makers, budget setters and public health commissioners – it now needs to employ its first paid employee – a Campaigns Manager.
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