‘Covid has become the unmentionable… and yet Long Covid is having a life-changing impact’

Long Covid is defined as 'signs and symptoms that develop during or after an infection consistent with Covid-19, continue for more than 12 weeks and are not explained by an alternative diagnosis' (NHS England, 2020). According to the ONS in 2022, the most common symptoms are fatigue, breathlessness, a cough and muscle aches. However, these definitions fail to capture the devastating nature of Long Covid and its effects.

The World Health Organization estimates that there are over 200 different symptoms which have been reported, including a loss of taste and smell, pins and needles and cognitive impairment. Many studies now show how Long Covid is a complex multisystem disease which can affect almost all organ systems and has many different subtypes (see Ziyad Al-Aly & Topol, 2024). A large number of people with Long Covid experience Postural Orthostatic Tachychardia Syndrome (POTS), orthostatic intolerance and dysautonomia symptoms, which in themselves can be life-changing.

People affected by Long Covid experience a multitude of symptoms which can last for weeks, months or years. Five years into the pandemic there is now a body of literature showing Long Covid to involve multiple systems in the body. However, the true scale of the effects of Covid is only beginning to show itself:

The oncoming burden of Long Covid faced by patients, healthcare providers, governments and economies is so large as to be unfathomable, which is possibly why minimal high-level planning is currently allocated to it. If 10% of acute infections lead to persistent symptoms, it could be predicted that around 400 million individuals globally are in need of support for Long Covid' (D. Altman et al., July 2023, The immunology of Long COVID).

A note on terminology

There are a few different terms used to describe this illness. Long Covid was a term developed and used by patients and is most commonly chosen, and is what we will use in this article. Within the medical model, Post Covid-19 Syndrome or Condition is commonly used.

Growing evidence

Although there is still a lot that is unknown about this condition, research is continuing to increase understanding. Research does show that anyone can develop Long Covid, regardless of age or gender. Developing Long Covid is not linked to the severity of the initial Covid-19 infection, though the risk of developing Long Covid increases with each infection. There are factors which can increase someone's risk of developing Long Covid, and it is known to disproportionately affect women aged 35-69 years, those working in health and social care, and those living in deprived areas (ONS, 2022).

Globally, it is estimated that 10-20 per cent of people who contract Covid-19 will go on to develop symptoms of Long Covid, and it is estimated that there are over 2 million people living with Long Covid in England and Wales alone, although this is likely to be an under-estimation. Recent data from a GP patient survey actually indicated that 4.6 per cent of the population in the UK have Long Covid. Recent figures suggest that globally, 400 million people may be living with it.

Where Covid was initially believed to be a respiratory infection, evidence shows that the virus can affect any system in the body. An ever-increasing body of research has shown that Covid increases the risk of heart attacks, strokes and diabetes, and studies are illuminating the damaging effects on the brain. Data continues to emerge around these effects, one example being in 2022 when the British Heart Foundation stated that there have been 100,000 excess heart deaths in the UK since the beginning of the pandemic.

Denial and misinformation

Five years into the pandemic, despite the extensive and growing evidence of the damaging and often devastating effects of Covid and repeat infections, there continues to be a denial of the enormous scale of the issue. Covid has become the unmentionable. As we write this, in the week up to 25 October 2024, there have been 266 deaths in England with Covid. Yet it is not unusual for the media to address key issues such as the concerning and unprecedented rise in long-term sickness in the UK, without any mention at all of Covid or Long Covid at all.

Despite an enormity of evidence to the contrary, many people equate a Covid infection to a mild cold. The lack of public health information about Covid and Long Covid allows misinformation to fill in the gaps. There remains a lack of Covid mitigations in healthcare, with mixing of Covid and non-COVID-positive patients in some hospitals. 

It is not difficult to find stories from those who request Covid precautions when seeking healthcare, to be met with resistance from healthcare staff who state that they are simply following guidance, despite the unfolding Covid inquiry illuminating the significant flaws in this guidance.

Narratives from early in the pandemic that children were not affected by Covid are at odds with the statistics. ONS figures show the near doubling of Long Covid in children from 2023 to 2024 and Paediatric Autoimmune Neuropsychiatric Disorder (PANS), which can show itself as sudden behaviour changes in children following an infection, has been shown to have devastating effects on children. Despite this mounting evidence, there remains no standards or drive to clean the air in schools, and efforts of concerned parents to raise these issues with schools are often met with resistance or silence.

This lack of public health measures and Covid mitigations doesn't just affect individuals but impacts significantly on the economy. A recent report from The Economist states that in the UK, Long Covid could result in more than 250 million lost work hours in 2024.

What is our role, as psychologists, in relation to this apparent denial of what is a hugely concerning and ever-increasing evidence base of the harms of Covid and Long Covid?

What do our services look like?

At the end of 2020, the NHS launched a five-point plan to support individuals with Long Covid. Key to this was the introduction of Long Covid assessment clinics, providing patients with access to multi-disciplinary teams (MDT) and support to optimally manage their symptoms. Services across the UK and Ireland vary in their approach. Many take an MDT approach with representatives from physiotherapy, occupational therapy, psychology and medicine for example. Some services are led by a medical doctor, others are led by members of a therapy team such as physiotherapy.

Long Covid is extremely challenging, physically and emotionally, shattering and disrupting lives. Too many people with Long Covid face disbelief and gaslighting from families, friends, employers, and medical professionals from whom they seek care. Many people are unable to work, or work as they did before, and lose their income, but are unable to access financial support due to the system not understanding or being well adapted to chronic or fluctuating illness. 

Repeat infections can worsen Long Covid symptoms, but it can be very challenging trying to avoid reinfection in a society which has largely abandoned Covid mitigations. Those who do mitigate against Covid infections by wearing a mask are becoming increasingly marginalised. These are just some of the challenges of living with Long Covid.

In narrative therapy literature, Kaethe Weingarten writes how illness and our relationship to it 'threatens the way we know ourselves and how others know us. Anything that helps put illness in its place, which allows us to feel that we are who we are despite it, is welcome'. Illness precipitates multiple losses including self loss. Weingarten writes of the 'painful gap' between who someone was before their illness, who they dreamt themselves to be, and who they find themselves to be with their illness. 

The sense of who you are becomes 'thinned down' by these multiple losses. Illness which is poorly understood or stigmatised, or does not follow expected narratives of illness and recovery brings about extra layers of challenge and isolation. The power of witnessing and accompanying people through these challenges should not be underestimated, particularly as many of us in the Long Covid community have been 'systematically unwitnessed' (see Sarah Ramey's 2020 book The Lady's Handbook for her Mysterious Illness). Working with people to begin to reassemble themselves alongside the living losses of illness can be invaluable.

As psychologists we may work with trauma, related to the illness experience itself, the effects of living with ongoing frightening symptoms, or re-traumatisation. We can work with people to manage the impact of their symptoms through the nervous system and breath work. Dysautonomia, or dysregulation of the nervous system is common in Long Covid and Lucy works with both individuals and groups on nervous system regulation. 

Managing the physical limitations of Long Covid and Post Exertional Symptoms Exacerbation, or PESE/PEM is crucial in navigating the condition. Living with Long Covid and other chronic health conditions means constantly having to let go of things which are important to you. Long Covid also disrupts social relationships and family roles, people often finding themselves isolated from others through a lack of understanding of the illness, or from differences in levels of covid mitigations practised. 

It can be hard to convey to others just how much your life has been changed by Long Covid, particularly when many of the symptoms aren't visible from the outside. Psychologists can provide spaces to facilitate support, perhaps through peer support or by creating spaces to explore the relational and social impacts of Long Covid. Psychologists and neuropsychologists may also have a role in assessing and managing cognitive changes commonly associated with Long Covid.

Although exact numbers are not known, a significant percentage of people with Long Covid present with symptoms of ME. The long history of the psychologising of ME has had and continues to have devastating consequences. As psychologists, as healthcare professionals and as people, we will encounter and work with people with Long Covid. We can, and must, inform ourselves and challenge misinformation about ME, Long Covid and other chronic health conditions, and the psychologising of a truly devastating physical health condition.

As psychological professionals, we work with the patient to develop a person-centred approach. For some, it might be using an Acceptance and Commitment Therapy [ACT] approach and supporting patients with adjustment and helping them navigate a way forward, living in line with their values alongside their symptoms. For others, a Compassion Focused Therapy [CFT] or narrative approach might be more suitable. Approaches which help to regulate the nervous system can also be fundamental in managing Long Covid symptoms.

Sarah commonly uses ACT which is an established approach for use with long-term health conditions, and research is emerging of the benefits specific to those with Long Covid. ACT aims to increase psychological flexibility and support individuals to live their lives in line with their values whilst also managing their symptoms. To do this we work on six core processes; contacting the present moment, defusion, acceptance, self-as-context, values and committed action. 

These can be grouped into three areas known as the 'triflex'; be present (self-awareness and connecting to the present moment), open up (openness to experience), and do what matters (engaging in valued action). We might not be able to stop the symptoms of Long Covid, but we hope to help the individual live a more meaningful life with an improved quality of life.

Psychologists can, then, contribute to helping people to navigate the multiple complex challenges of having Long Covid. However, this should be embedded within services which are centred around treating the pathophysiology of Long Covid and its morbidities. This can only be done within the context of evolving research which seeks to understand and treat the underlying mechanisms of Long Covid.

What's the future for Long Covid services?

Long Covid is having a life-changing impact on an increasing number of people. Many services are faced with uncertainty around funding, and at best are funded year to year. At the end of 2023, NHS England announced that they would no longer fund these clinics centrally and directed regional Integrated Care Boards (ICBs) to allocate funding. As a result, patients and clinicians have been left with a huge uncertainty. 

We know some services have already had to close due to a lack of resources and many more face this prospect. However, Long Covid shows no signs of going away, and despite a dearth of studies, the data that does exist points to a consistent increase in the number of people living with Long Covid (The Economist: An incomplete picture: understanding the burden of Long Covid).

Members of the British Psychological Society are coming together to write guidelines for Psychological Professionals working with people with Long Covid, but more work needs to be done to ensure people get effective treatment and support in a timely manner. 

Research, Covid mitigation strategies and treatments for people with Long Covid should be prioritised as a matter of urgency. There's only so long we can ignore the elephants in the room – Covid and Long Covid – while they cause serious harm to individuals, societies and economies.

Your authors…

We are a small representation of a large specialist interest group (SIG) of psychological professionals working in Long Covid services across the United Kingdom and Ireland.

Dr Sarah Keith is a Health Psychologist and co-chair of the SIG. She has been working in an NHS adult and paediatric Long Covid service since they began in November 2020.

Dr Lucy Gahan is a Clinical Psychologist working in an NHS Long Covid service. She developed Long Covid after a Covid infection in March 2020 and has only partially recovered her health and functioning. In 2022 she published Breaking Free from Long Covid: Reclaiming Life and the Things that Matter, drawing on her experience of navigating the multiple and complex challenges of navigating Long Covid.