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 ME/CFS?

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

CHARITY AND SUPPORT GROUP INFORMATION

ME Association UK

Long Covid Overview, Symptoms Diagnosis and Further Information https://meassociation.org.uk/long-covid-me-cfs- overview/

Further Long Covid MEA Support Resources

British Lung Foundation-03000 030 555

COVID AID, hello@covidaidcharity.org

Long COVID kids, info@longcovidkids.org

Long COVID Physio, https://longcovid.physio/contact

Long COVID SOS, info@longcovidSOS.org

Long Covid Support, info@longcovid.org

EDUCATIONAL RESOURCES

Bateman Horne Centre Educational Webpage

PASC or post-acute sequelae of SARS-CoV-2 infection

https://batemanhornecenter.org/education/long- covid/

World Health Organization Q&A - Long COVID

https://www.who.int/news-room/questions-and- answers/item/coronavirus-disease-(covid-19)-post- covid-19-condition

Long COVID Physio - Post-exertional malaise

https://longcovid.physio/post-exertional-malaise

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.

https://world.physio/toolkit/world-pt-day-2021- information-sheets-english

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:

https://www.rcot.co.uk/post-covid-syndrome-long- covid

Information on conserving energy:

https://www.rcot.co.uk/conserving-energy

Long Covid – NICE Guidelines

NICE guideline [NG188] COVID-19 rapid guideline: managing the long-term effects of COVID-19

https://www.nice.org.uk/guidance/ng188

LONG COVID RESEARCH

ME Research UK

https://www.meresearch.org.uk/?s=Long+Covid

Invest in ME Research

https://www.investinme.org/page-search- results.shtml?q=Long+Covid

ME/CFS VIDEOS – ALSO DISCUSSING LONG COVID