Over the past year the world has tracked the progress of the COVID-19 pandemic using data collection of cases and COVID-related deaths. Yet we now know that these provide only a partial picture of the impact that COVID-19 has made to the lives of those affected.

Long after being infected by the COVID-19 virus many people struggle to recover from the acute infection, suffering often disabling symptoms that last weeks or months and, in some cases, with disabilities that are likely to be very long lasting. Our understanding of this new condition, now termed Long COVID, is growing rapidly.

For this, we owe a great deal to many people, but especially to those affected who have come together to document, analyse and report on the complex nature of this condition and its impact on their lives, as well as the health professionals, in some cases themselves suffering from Long COVID, who have initiated important research projects.

The chances of having long-term symptoms does not seem to be linked to how ill you are when you first contract COVID-19.

People who had mild symptoms at first can still have long-term problems. There is also no test for Long COVID, and there is no universally agreed definition of Long COVID, but it does cover a broad range of symptoms such as fatigue, muscle pain, and difficulty concentrating.

The NHS describes the symptoms of Long COVID as:

  • extreme tiredness (fatigue)
  • shortness of breath
  • chest pain or tightness
  • problems with memory and concentration (“brain fog”)
  • difficulty sleeping (insomnia)
  • heart palpitations
  • dizziness
  • pins and needles
  • joint pain
  • depression and anxiety
  • tinnitus, earaches
  • feeling sick, diarrhoea, stomach aches, loss of appetite
  • a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
  • rashes

In September 2021 researchers from the University of Oxford found 37% of people had at least one long-COVID symptom diagnosed in the 3-6 month period after COVID-19 infection. The most common symptoms were breathing problems, abdominal symptoms, fatigue, pain and anxiety/depression.

Further research from the Office for National Statistics (ONS) estimates that over a million people in the UK were reporting symptoms associated with Long COVID at the beginning of March 2021, with over two-thirds of these individuals having had (or suspecting they had) COVID-19 at least 12 weeks earlier.

An estimated 674,000 people reported that their symptoms have negatively impacted on their ability to undertake their day-to-day activities. People who tested positive for COVID-19 are around eight times more likely to suffer prolonged symptoms than observed in the general population. This ONS report also found:

  • “Over the four-week period ending 6 March 2021, an estimated 1.1 million people in private households in the UK reported experiencing Long COVID (symptoms persisting more than four weeks after the first suspected coronavirus (COVID-19) episode that are not explained by something else).
  • “The estimates presented in this analysis relate to self-reported Long COVID, as experienced by study participants, rather than clinically diagnosed ongoing symptomatic COVID-19 or post-COVID-19 syndrome.
  • “Self-reported Long COVID symptoms were adversely affecting the day-to-day activities of 674,000 people in private households in the UK, with 196,000 of these individuals reporting that their ability to undertake their day-to-day activities had been limited a lot.
  • “Of people with self-reported Long COVID, 697,000 first had (or suspected they had) COVID-19 at least 12 weeks previously, and 70,000 first had (or suspected they had) COVID-19 at least one year previously.
  • “Prevalence rates of self-reported Long COVID were greatest in people aged 35 to 69 years, females, those living in the most deprived areas, those working in health or social care, and those with a pre-existing, activity-limiting health condition; however, it is not possible to say whether these patterns are because of differences in the risk of coronavirus infection or susceptibility to experiencing Long COVID following infection.
  • “These estimates provide a measure of the prevalence of self-reported Long COVID across the whole population, and reflect both the risk of being infected with coronavirus and the risk of developing Long COVID following infection; to investigate the second of these components, we examined the duration of self-reported symptoms following confirmed infection.
  • “Among a sample of over 20,000 study participants who tested positive for COVID-19 between 26 April 2020 and 6 March 2021, 13.7% continued to experience symptoms for at least 12 weeks. This was eight times higher than in a control group of participants who are unlikely to have had COVID-19, suggesting that the prevalence of ongoing symptoms following coronavirus infection is higher than in the general population.
  • “Of study participants who tested positive for COVID-19, symptom prevalence at 12 weeks post-infection was higher for female participants (14.7%) than male participants (12.7%) and was highest among those aged 25 to 34 years (18.2%).”

The reasons why some people get Long COVID and others do not remain unknown, although it is associated with increasing age, the number of symptoms in the acute phase, and being female – among other characteristics.

Support for members with Long COVID

Earlier this year £760,000 of funding was announced to support those living with Long COVID in Scotland. This joint funding between the Scottish Government and Chest Heart and Stroke Scotland is supporting those suffering with the post viral illness. This funding is also being used to fund a Long Covid Advice Line staffed by nurses who can direct patients to support available to themselves or their families.

The World Health Organisation makes the suggestion that those suffering with Long COVID should be given pastoral care and support alongside the relevant medical interventions.

In Germany, the earliest Long COVID self-help groups started in March 2020, in hardest-hit areas in North Rhine Westphalia and Bavaria. Participants use the forums to exchange experiences of the disease, to support each other and to gain new perspectives. Italy has also seen a number of patient initiatives, including a social network group called “We who have beaten COVID” with 12,630 subscribers at the beginning of January 2021. Belgium has also seen many patients, including health workers, join social media groups in both French and Flemish languages, with some hospitals also setting up their own discussion groups, many of whom are now contributing to research studies into clinical features and management of Long COVID.

A group focusing on Long COVID in children has been created in the UK. Additionally, Asthma UK and the British Lung Foundation have come together with the support of others including the British Thoracic Society and the Primary Care Respiratory Society to develop the online Post-COVID HUB for people left with breathing difficulties following a

COVID-19 infection to access advice and support to manage symptoms. Within its policy analysis, the WHO also notes the prevalence of Facebook support groups (some with thousands of members) in the UK which offers daily support to those whose quality of life has been severally impacted by Long COVID.