Long Covid Support was formed by a group of people struggling to recover from Covid-19, who found each other online and have been facilitating international peer support and campaigning in the UK for recognition, rehabilitation and research into treatments since May 2020. 

Long Covid Support is a charitable company, registered in the UK, but with affiliations in over 100 countries and territories. A core group of 50 volunteers, all themselves with lived experience of Long Covid, are involved in our core work streams.

  • Trustees: Danny Altmann, Gail Carson, Jo Dainow, Michael Gobbi, Margaret O’Hara, Monique Jackson, Elaine Maxwell, Natalie Rogers
  • Steering Group: Christina Barratt, Jo Dainow, Louise Fairbrother, James Glen, Michael Gobbi, Monique Jackson, Lesley Macniven, Margaret O’Hara, Jo Platt, Natalie Rogers
  • Advocacy and Campaigning: Karen Cook, Louise Fairbrother, Ian Frayling, Claire Hastie, Jo House, Monique Jackson,  Francesca Lo Castro, Helen Oakleigh, Natalie Rogers, Nikki Smith, Edi Whitehead
  • Research: Lisa Agyen, Darren Brown, Karen Cook, Maddy Corper, Claire Hastie, Jo House, Monique Jackson, Francesca Lo Castro, Margaret O’Hara, Clare Rayner, Richard Roels, Nikki Smith
  • Employment: Darren Brown, Jenny Ceolta-Smith, Joanna Clynes, Karen Cook, Maddy Corper, Lesley Macniven, Clare Rayner, Richard Roels, Polina Sparks, Kirsty Stanley, Cathy Thomson
  • Support: Christina Barratt, Kelly Marie Carrington, Jo Dainow,  Amy Durant, Adina Gerver, Tereza Gobbi, Deniz Guevarra, Claire Hastie, Jason Hurst, Kelly Marie Keeney, Nechama Krevitz, Lesley Macniven, Bhasha Mewar, Margaret O’Hara, Angela Veiga 
  • Social Media: James Glen

Our international Long Covid Support Group is a warm and inclusive space for people experiencing the diverse, debilitating and alarming symptoms of Long Covid to share information, help each other through the bad days and rejoice in the good. We have several sister and affiliate groups that focus on particular areas:

  • Covid-19 Research Involvement Group, where investigators can make connections with patients for involvement, participation and engagement in research into Covid-19.
  • Long Covid Kids, a parent-led campaign and support group.
  • Long Covid Scotland, an action group focused on the specific issues facing people living in Scotland.
  • Long Covid Wales, a patient-led support group focused on the specific issues facing people living in Wales.
  • Long Covid Physio, a global peer-support and advocacy group for Physiotherapists (Physical Therapists) and support workers living with Long Covid.

What is Long Covid?

From hair loss to Covid toes, Long Covid can affect any part of the body. People of all ages and previous levels of health and fitness are at risk of experiencing its life-changing effects - including children and adolescents. Anyone experiencing the symptoms of Long Covid should contact their GP or health care professional. See here Long-term effects of coronavirus and the Resources section for further advice.’

A study by Patient Led Research for Covid-19 found that after seven months of illness, 45% of respondents reported requiring a reduced work schedule compared to pre-illness and 22% were not working due to their health.

It is not yet understood why some people are affected severely while others are asymptomatic, but the UK’s Office of National Statistics estimates that 10% of people who test positive for Covid-19 experience symptoms for 12 weeks or longer.

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