What is Long Covid
Long Covid or Post-Covid-19 Syndrome is a ‘Post-viral Fatigue Syndrome' similar to ME/CFS, that is triggered by Covid-19 infection.
It can affect anyone exposed to the SARS-CoV-2 virus, irrespective of age or severity of original symptoms.
What Causes Long Covid?
Long Covid can cause a variety of symptoms in people that have either resulted from organ damage caused by the initial Covid-19 infection, or in others, where they more closely mimic those seen in ME/CFS (Covid-induced M.E.).
Long Covid and ‘Covid-Induced’ M.E.
Globally
65 million people are estimated to have Long Covid
50% approx.
of those with Long Covid have M.E.-like symptoms
England & Scotland
approx. 2million (ONS March’24)
USA approx.
17.6 million adults (CDC March’24)
Who Does Long Covid Mostly Affect?
How is Long Covid Diagnosed?
Whilst Long Covid does not have a clear path by which to diagnose it, the treatment advice is aimed at improving quality of life.
Similarly to a doctor making a diagnosis of ME/CFS, a diagnosis of Long Covid is based upon a person’s medical history and symptoms, taking the WHO definition into account, and by ruling out other diseases with similar symptoms.
The National Institute for Clinical Medicine (NICE) Guideline Long Covid
NICE produced a ‘rapid guideline’ in 2020 for healthcare professionals, that covers identifying, assessing and managing the long-term effects of COVID-19 (Long Covid). This guideline is updated as the scientific evidence develops.
(Last update 2024) https://www.nice.org.uk/guidance/ng188)
How do the Symptoms of Long Covid Generally Present?
• As a collection of symptoms
• Changing over time
• Frequently overlapping
• Affecting any system in the body
Most Commonly Reported Symptoms of Long Covid
This is not an exclusive list, as world-wide there are reported to be approximately 200 symptoms of Long Covid.
As is seen in ME/CFS, individuals with Long Covid experience different combinations and severity of these symptoms, which ultimately affect their ability to carry out every day personal, social, occupational, educational, physical, mental and emotional tasks and activities.
Treatment for Long Covid
Currently, there is no effective drug treatment for Long Covid. However, the more common symptoms can be managed with already established treatments.
Globally research and clinical trials are ongoing, so it is hoped that this will eventually lead to both a better understanding of, and possible treatments for Long Covid itself.
Additional Support for Vulnerable Groups, Children and Young People
Additional support from social services may be required for ‘vulnerable groups’ such as – the elderly, or those with complex physical or mental health needs.
Referral to a specialist Paediatrician should be considered from 4 weeks, for children and young people (under 18) with ongoing symptoms of Covid-19 or post-Covid-19 syndrome/Long Covid.
M.E. And Long Covid Overlap
Links to Additional Resources and Support on Long Covid
ME Association UK - Long Covid Overview
EDUCATIONAL RESOURCES
Bateman Horne Centre - Long Covid Education
World Health Organization - Post COVID-19 Condition/Long Covid
Long COVID Physio - Post-Exertional Symptom Exacerbation (PESE)
World Physiotherapy Day 2021 information sheets. The focus for the 2021 World PT Day was rehabilitation and Long COVID and the role of physiotherapists in the treatment and management of people affected by Long COVID.
Downloadable Information Sheets
ALLLIED HEALTH PROFESSIONAL INFORMATION
Royal College of Occupational Therapy (RCOT) - range of resources for both OTs supporting people to manage Post-COVID syndrome, and those who are experiencing Long Covid themselves:
Post-Covid Syndrome/LongCovid - O/T Advice for Managing Energy
NICE Guidelines (NG188) Last Updated January 2024 - COVID-19 Rapid Guideline
LONG COVID RESEARCH
Invest in ME Research
Invest in ME Research - 14th Biomedical Research into ME Colloquium 2025 #BRMEC14
ME/CFS VIDEOS – ALSO DISCUSSING LONG COVID
Dialogues for a neglected illness (Dialogues for ME/CFS) was produced with a Wellcome Public Engagement Fund Award between Sept. 2018 and Dec. 2021. It explores aspects of the disease known as ME/CFS from the perspectives of doctors, researchers, patients, carers, advocates and MPs. During this three year period major changes have taken place: View Here
Information provided by Linda Campbell, Medical Professional Education Advisor at the charity. Content design by Colin Cranney - Brand • Design • Consult
You can also download and print our brochure here
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