Long Covid & ME/CFS: Information & Management by Dr Charles Shepherd

May 6, 2021


Dr Charles Shepherd, Hon. Medical Adviser, ME Association

Information and guidance from The ME Association on Post-Covid Fatigue, Post-Covid Syndromes, Long Covid and the overlaps with ME/CFS

This is a new 40-page booklet covering all aspects of Long Covid & ME/CFS. It forms part of the range of FREE Covid Resources we have made available on the MEA website.

Introduction

The ME Association (MEA) has been helping people with post-viral fatigue/debility, post-viral fatigue syndromes (PVFS) and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) for many years.

Back in April 2020 we 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 not usually requiring hospital admission.

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

In April and November 2020, we produced MEA information and guidance to the management of post-covid fatigue, post-Covid fatigue syndromes and the overlap between ME/CFS and Long Covid.

This information and guidance was based on how our knowledge and expertise about post-viral fatigue, post-viral fatigue syndromes and ME/CFS could be transferable to people who were not recovering from COVID-19, and where the symptoms were the same or very similar to ME/CFS.

This information and guidance has now been fully updated to take account of developments in our understanding of the presentations and management of post-COVID-19 ill health and the how best to name the various clinical presentations.

How many people have a Post-Covid Syndrome or Long Covid?

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 and are remaining unwell after 3 months are accurate, this would translate into well over 100,000 people with some form of significant post-Covid ill health.

The latest data (March 2021) from the Office of National Statistics (ONS) indicates that:

  • One in five people were still symptomatic at 5 weeks after the start of the initial infection – approximately 1 million people
  • One in seven were symptomatic at 12 weeks – approximately 700,000 people
  • Around 70,000 people were still symptomatic one year on from the initial infection
  • In 20% of cases this was having a significant effect on day-to-day activities
  • Post-covid ill health was more common in people working in health and social care professions

Data from the latest (March 2021) University of Leicester/PHOSP-COVID study of people who were admitted to hospital indicates that seven out of ten people who were hospitalised with COVID-19 were still not recovered five months after discharge.

Researchers reported that each participant had an average of nine persistent symptoms. The ten most common symptoms were: muscle pain, fatigue, physical slowing down, impaired sleep quality, joint pain or swelling, limb weakness, breathlessness, pain, short-term memory loss, and slowed thinking. Around 25% also had significant anxiety or depression.

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