This webpage directs you to information and support organisations linked to long COVID.
PLEASE NOTE: Immunodeficiency UK does not have the expertise to advise you on the diagnosis, treatment or management of long COVID. Helpline queries related to this topic will be signposted to the information below.
What is long COVID?
Long COVID, also known as post-COVID-19 syndrome, occurs when the symptoms of COVID-19 last longer than several months after the initial illness.
The World Health Organization (WHO) defines long COVID as the continuation or development of new symptoms 3 months after the initial [COVID-19] infection, with these symptoms lasting for at least 2 months with no explanation.
The National Institute for Health and Care Excellence (NICE) says that the term long COVID can also refer to COVID-19 symptoms that last from 4 to 12 weeks after infection.
You don't need to have been seriously ill with COVID-19 to develop long COVID. And even those who experience only mild COVID-19 symptoms at first can be affected.
Long COVID: symptoms, tests and treatment
- Long COVID – NHS
- Long COVID: systems, tests and treatment – British Heart Foundation
- Is there hope for people with long COVID? – Royal Society blog
Support organisations for long COVID
Long COVID Support – A peer-led charity offering information, support and advocacy for people with long COVID and carers. It runs online support groups, publishes advice and engages with policymakers.
Long COVID Kids – A charity that focuses on children and young people with long COVID.
The Brain Charity – Offers support with the neurological symptoms of long COVID, such as memory issues and 'brain fog'. Provides emotional support, counselling, information and advice.
Asthma + Lung UK – Has a support group for those living with long COVID, especially respiratory symptoms. Offers online sessions, advice on breathlessness and a helpline.
Breathe On – Provides patient advocacy, signposting to health services and a knowledge hub on living well with long COVID.
Mindsong – Runs a weekly online group for people who are experiencing symptoms of long COVID. Registered music therapists lead the sessions and focus on breathing, wellbeing and relaxation.
Posted October 2025
