L
Name  Long Covid
Related to/Also known as
  • Post-Covid Fatigue Syndrome
  • Post-Covid
  • Post-COVID-19 Neurological Syndrome (PCNS)
Symptoms of Long Covid

"Post-COVID-19 effects could include:

  • "Muscle weakness and joint stiffness
  • "Extreme tiredness (fatigue) and a lack of energy
  • "A persistent cough
  • "Loss of appetite, weight loss, swallowing difficulties
  • "Sleep problems ...
  • "Memory problems ...
  • "Changes in your mood, or anxiety or depression "

Source: Oxford Health NHS Foundation Trust https://www.oxfordhealth.nhs.uk/wp-content/uploads/2020/03/OH-090.20-Post-COVID-Leaflet.pdf

"Post/Long-Covid is not simply the same as ME/CFS.

"However, some people with Post/Long-Covid have an illness and symptoms that are almost certainly the same as the Post-Viral Fatigue Syndromes (PVFS) that often precede a diagnosis of  where an infection is believed to be the trigger.

"Some people with Post/Long-Covid are being diagnosed with ME/CFS as their symptoms persist for more than 3-4 months and because they meet the ME/CFS diagnostic criteria."

Source: ME Association https://meassociation.org.uk/2020/10/me-association-statement-on-the-nice-clinical-guideline-for-me-cfs-and-the-nice-guideline-for-post-long-covid-19

"We know some people may have breathing difficulties after recovering from COVID-19. We don’t yet know if this is from the virus, or from receiving treatment for the virus."

Source: British Lung Foundation https://hello.blf.org.uk/page/61034/action/1?_ga=2.149667315.49739266.1605175776-1802521911.1605175776

Useful national contacts

ME Association
ME Connect Telephone Helpline: 0344 576 5326
Web: https://meassociation.org.uk
Find your local support group: https://meassociation.org.uk/information-and-support-line/localsupportgroups


Post-COVID HUB (Asthma UK and British Lung Foundation)
team of respiratory specialists are to support you with post-COVID breathlessness
Phone 0300 222 5942, 9am – 5pm, Monday to Friday
Web: www.post-covid.org.uk

Children & young people

Long Covid Kids
Link opens in new window www.facebook.com/longcovidkids

PIMS: the COVID-19 linked syndrome affecting children - information for families (Royal College of Paediatrics and Child Health)
Link opens in new window www.rcpch.ac.uk/resources/pims-covid-19-linked-syndrome-affecting-children-information-families

Coronavirus (COVID-19) in children (NHS website)
Link opens in new window www.nhs.uk/conditions/coronavirus-covid-19/symptoms/coronavirus-in-children/

Long Covid kids: Mum's 'heartbreak' over children's illness (BBC, February 2021)
Link opens in new window www.bbc.co.uk/news/uk-england-tyne-55938399

Online Long Covid resources

 Is there a link between Coronavrus and long-term neurological conditions? (The Brain Charity, September 2020)

"Middle-aged women 'worst affected by long Covid', studies find" (BBC, March 2021)
Link opens in new window www.bbc.co.uk/news/health-56509340

Post COVID-19 Patient information pack (Homerton University Hospital NHS Foundation Trust)
Link opens in new window www.homerton.nhs.uk/download/doc/docm93jijm4n7420.pdf?amp;ver=15187

COVID-19: long-term health effects (Gov.UK)
Link opens in new window www.gov.uk/government/publications/covid-19-long-term-health-effects

Long COVID symptoms: What we (don’t) know and who it impacts (DW)
Link opens in new window www.dw.com/en/long-covid-symptoms-treatment-support-effects/a-56220741

How Long Covid challenged my mental health (Mind charity, October 2020)
Link opens in new window www.mind.org.uk/information-support/your-stories/how-long-covid-challenged-my-mental-health/

Post-viral fatigue: a guide to management (North Bristol NHS Trust)
Link opens in new window www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/post-viral-fatigue-a-guide-management

Coronavirus - information for people with neurological problems (Brain & Spine Foundation)
Link opens in new window www.brainandspine.org.uk/coronavirus-covid-19

Coronavirus (COVID-19) (NHS website)
Link opens in new window www.nhs.uk/conditions/coronavirus-covid-19

Chronic fatigue syndrome (CFS/ME) (NHS website)
Link opens in new window www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs

Long Covid: How knowledge of ME could help sufferers (BBC, November 2020)
Link opens in new window www.bbc.co.uk/news/av/health-55076814

Parosmia: 'Since I had Covid, food makes me want to vomit' (BBC, January 2021)
www.bbc.co.uk/news/stories-55824567

Long Covid: 'I can't walk 10m without a rest' (BBC, February 2021)
Link opens in new window www.bbc.co.uk/news/uk-56113021

 Living with a condition (The Brain Charity)

News and events

"New £20m call for research into physical and mental effects of 'long COVID'" (National Institute for Health Research, November 2020)
Link opens in new window www.nihr.ac.uk/news/new-20m-call-for-research-into-physical-and-mental-effects-of-long-covid/26163

"NHS to offer ‘long covid’ sufferers help at specialist centres"(NHS England website, October 2020)
Link opens in new window www.england.nhs.uk/2020/10/nhs-to-offer-long-covid-help

"CSP welcomes 'long Covid' acknowledgement" (Chartered Society of Physiotherapists, October 2020)
Link opens in new window www.csp.org.uk/news/2020-10-08-csp-welcomes-long-covid-acknowledgement

"'Long covid': Grigor Dimitrov on still suffering from coronavirus symptoms" (BBC, November 2020)
Link opens in new window www.bbc.co.uk/sport/54872855

"Coronavirus: 60,000 may have 'long Covid' for more than three months – UK study" (The Guardian newspaper, September 2020)
Link opens in new window www.theguardian.com/society/2020/sep/08/60000-may-have-long-covid-for-more-than-three-months-uk-study

ENO Breathe(English National Opera)
Link opens in new window https://eno.org/eno-breathe

Our resources Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS

The library at the Brain Charity has a range of resources on Long Covid and on a wide range of disability-related issues.

This includes the ME Association's booklet Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS.