New Free Leaflet: The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS

September 22, 2020

Dr Charles Shepherd, Hon. Medical Adviser, ME Association

Introduction and Key Messages

Back in April the ME Association became aware of an increasing number
of people who had been ill with COVID-19 and were not improving, even after several weeks.

Almost all had been self-managed at home with an illness that mostly varied from mild to moderate in severity, but did not require hospital admission.

Most had debilitating fatigue, sometimes with continuing COVID-19 symptoms involving the lungs or heart in particular. Some had symptoms that are more consistent with the sort of post-viral fatigue syndromes that may precede ME/CFS.

Five months on and we are now in a situation where some people are being given a diagnosis, or a possible diagnosis, of post-COVID-19 ME/CFS.

In April the ME Association published a free guide to post-COVID fatigue and post-COVID fatigue syndromes.

This information has now been fully updated to cover all the developments that have occurred since then.

The ME Association has longstanding experience in the management of post-viral debility, post-viral fatigue syndromes and post-infection ME/CFS.

This new and comprehensive leaflet should be of help to people in relation to the management of post-COVID fatigue and some aspects of post-COVID syndromes where they overlap with ME/CFS symptomatology.

  • At present, we have no firm indication as to how many people are experiencing persisting ill health following COVID-19. However, if current estimates of around 10% of people who were home managed are accurate, this could translate into around 60,000 people with some form of post-COVID ill health that has persisted beyond a month.
  • According to Tim Spector, professor of genetic epidemiology at King’s College London, around 12% of sufferers report symptoms to the Covid Tracker app for longer than 30 days. One in 200 says the effects last for more than 90 days.
  • Long-COVID, post-COVID fatigue and post-COVID fatigue syndrome are all being used as diagnostic labels.
  • Many have debilitating fatigue as a primary symptom.
  • Some have respiratory, heart and other symptoms that are the same, or very similar, to the acute infection – i.e. breathlessness, palpitations, intermittent fevers, loss of taste or smell.
  • Others have symptoms that are very similar to those seen in post-viral fatigue syndromes that can follow any infective illness and may precede ME/CFS.
  • Some have a combination of post-viral fatigue syndrome symptoms and acute COVID-19 infection symptoms.
  • In cases where post-COVID syndrome symptoms have persisted for more than three months, and are consistent with those of ME/CFS, a diagnosis of post-COVID ME/CFS should be considered.

Paul Garner Post-Covid Syndrome

Professor Paul Garner describes his life with Long Covid. He is a professor of infectious diseases at Liverpool School of Tropical Medicine, and this video was recorded by Capital Radio (Liverpool).

Telephone Helpline

The ME Connect telephone helpline is available 365 days a year. The team of fully-trained and experienced volunteers will be happy to help with any questions you might have on the topics discussed in this leaflet or about Covid-19 and ME/CFS in general.

ME Connect Telephone: 0344 576 5326. The helpline is available every day, during the hours of 10am-12noon, 2pm-4pm and 7pm-9pm. Every caller is dealt with individually, in a sensitive and professional manner and all communications are kept completely confidential.

The ME Association

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