Background

Covid-19 is still quite a new virus. It was first reported in December 2019. It was recognised as a Public Health Emergency of International Concern by the World Health Organisation on 30 January 2020 and declared a “global pandemic” on 11 March 2020.
In the early stages of the Covid-19 pandemic in 2020, it was thought that the virus could cause:

• flu-like symptoms which got better for most people within a week or two
• serious illness which might need to be treated in hospital
• very serious illness which might need treatment in intensive care units
• (in fewer cases) death.

In 2020, a lot of the focus on Covid-19 was on the people who were thought to be at biggest risk of needing to be treated in hospital or on those most at risk of dying – that is, older people and people with serious pre-existing health conditions.

Two big things have changed since the early months of the pandemic. First, the development of different types of vaccines and a vaccination programme has meant that many people have additional protection against getting Covid-19 and being seriously unwell with Covid-19.  Second, there is increasing recognition of Long Covid.

Long Covid

In spring and summer 2020, reports began to appear in the media about people who were experiencing much longer lasting symptoms after catching Covid-19.

This condition is often called Long Covid. Long Covid has also been described using different words, like ‘post-Covid-19 syndrome’, ‘post-acute Covid’, ‘chronic Covid-19’ and ‘ongoing symptomatic Covid-19’. On this website, we have used the term ‘Long Covid’.

In 2020 and 2021, much of what was known about Long Covid has come from people with the condition sharing their experiences online with others and realising they are not the only ones to have longer lasting symptoms. In the early days of the pandemic, many people had to struggle to have their Long Covid symptoms taken seriously, as you can see and hear from some of the people interviewed for this website. By 2022, when the last people who contributed to this website were interviewed, Long Covid was widely seen as being an important priority for research and better treatment.

However, science and medicine are still at the early stages of understanding Long Covid. There are a lot of questions still to be answered, such as:

• Why do some people get Long Covid and others don’t?
• What causes Long Covid symptoms?
• What is the best way to treat people with Long Covid and support them to get better?
• How long might Long Covid symptoms last and will everyone with Long Covid symptoms fully recover?
• Are people who have been vaccinated less likely to get symptoms of Long Covid?
• Are people more or less likely to get Long Covid after being infected with different types or ‘variants’ of Covid-19?

While there are still so many questions, it is important for people to be able to learn as much as they can about Long Covid, including from other people’s experiences. On this website you can hear directly from people who know what it is like to have Long Covid – here they talk about things they have found difficult and some of the things that have helped.

As you will hear from people’s own stories, Long Covid can be life-changing. Many people have found it difficult to carry on with their lives as they were before they got Covid-19 because they are still feeling so unwell. We know that it can be a confusing and debilitating condition. Symptoms can come and go, sometimes for no obvious reason. Some people experience just one symptom, and other people have symptoms which affect many different parts of their body, such as their heart, lungs, stomach, joints or brain. You can see more detail about the types of symptoms people have experienced.

Because so many millions of people around the world have been infected with Covid-19, there will be many people affected, directly or indirectly, by Long Covid. In the UK, the Office for National Statistics estimated in December 2022 that:

• Around 2.2 million people in the UK were still experiencing symptoms more than four weeks after they got Covid-19.
• Nearly 1.9 million of these people still had symptoms more than 12 weeks after they had (or thought they had) Covid-19.
• 1.2 million people still had symptoms more than one year after having Covid-19 and nearly 600,000 more than two years after having Covid-19
• 1.6 million people said that their ability to live their day-to-day lives was affected

A note about this resource

We have produced this resource in 2022, based on interviews with people who were affected by Covid-19 and long Covid very early in the pandemic, in spring and summer 2020, and people affected during 2021 and 2022.  In the sections on the resource, we present the topics that people with long Covid spoke about most.