We need to talk about Long-Covid

Until recently, I worked as the Clinical Psychologist in a specialist Long-Covid Service for NHS staff members. Grace, a Physiotherapist living with Long-Covid, was referred to the service by her manager. She saw myself and the rest of the multidisciplinary team (MDT) during her attendance of the Long-Covid self-management group, plus some additional 1:1 support from the team Physiotherapist. Here, she outlines what her Long-Covid journey has been like so far, to set the context for what follows from me. 

The perspective of someone living with Long-Covid

"My name is Grace. I tested positive for Covid-19 in October 2020, and have had to make adaptations across all areas of my life ever since.

I was 32-years-old when I got Covid. At the time, I was working four days a week plus additional work due to the pressures of the pandemic on the NHS. I was also teaching online fitness classes from home via Zoom. Myself and everyone around me thought that I would bounce back within no time and be back at work after my isolation period ended. This was not the case. 

Four months later, I remained off work. Even when I did return, a very graded phased return had to be put in place. I struggled to accept my new diagnosis and would frequently demonstrate a 'boom and bust' approach, which frustrated me even further. Previously I was someone who was always on the go; Long-Covid meant that I needed to nap after having a shower. A mixture of old and new symptoms would come and go with no pattern. 

I buried my head in research looking for answers, but couldn't find anything. The thought of not knowing when or if the symptoms would completely go away was exasperating. Eventually I decided to ask for help and have been mourning the loss of the 'old Grace' ever since. I have been learning to pace, plan and prioritise, and am now listening to my body and what it needs. Long-Covid symptoms vary from minute to minute, never mind day to day, so the unknown is scary. Making plans is difficult, because I cannot anticipate how I am going to be, which often causes me to avoid social engagements. This makes me very isolated and I often feel alone, especially when no-one around can truly understand what I am going through. 

Recovery from Long-Covid is not linear, but we all seem to be learning this the hard way. I have created some YouTube videos about my own experience called 'My Long COVID journey podcasts – Grace Ferguson'). I have also created a video in conjunction with the Scottish National Wellbeing Hub, discussing my return to work."

A psychologist's perspective

Many different approaches to managing the spread of Covid-19 and mitigating its impact on health services have been taken, with advantages and disadvantages to different approaches (Siddaway, 2020). In this article, I argue that, as psychologists, we need to focus our professional efforts not just on Covid-19 but also on Long-Covid.

I view Long-Covid as a serious, complex long-term health condition that can be very challenging to live with and have a devastating impact on people's lives. My experience, and that of other psychologists I have talked to who work in clinical health psychology across the UK, suggests that awareness, knowledge, and attitudes towards Long-Covid and other long-term health conditions continues to be highly variable, including amongst health professionals. Disbelief and stigma continue to be common experiences, with many told or treated as though 'it's all in their heads'. 

Here, I aim to increase awareness of Long-Covid in the hope of reducing that stigma and further catalysing funding for research and specialist clinical services for all long-term health conditions. I believe that a biopsychosocial perspective has much to offer in understanding and helping ameliorate Long-Covid and other long-term health conditions, and that psychologists have a key role to play in designing and delivering appropriate and effective clinical services. 

Definition, prevalence, and cause

Long-Covid was barely heard of a year ago; it is now recognised as a clinical condition, increasingly attracting research attention. The British government recently recognised it as its number one health priority. It is understood as a chronic, post-viral condition. The NICE (2020) guidelines for this area differentiate:

- acute Covid-19 (signs and symptoms of Covid-19 for up to 4 weeks);

- ongoing symptomatic Covid-19 (signs and symptoms of Covid-19 from 4 to 12 weeks); and

- post-Covid-19 syndrome or 'Long-Covid' (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). 

This definition is consistent with the available evidence, which consistently indicates that the majority of people infected with Covid-19 recover with time. For example, the September 2021 Office for National Statistics figures indicate that around 3 per cent of people who test positive for Covid-19 report one or more Long-Covid symptoms for at least three months after infection; this figure is around 0.5 per cent among people who did not test positive for Covid-19 (ONS, 2021). 

Research investigating risk factors for Long-Covid is beginning to emerge. Women, 50- to 69-year-olds, people with existing long-term health conditions, people with high levels of virus in their body when testing positive, and people most severely ill (i.e. hospitalised or admitted to ICU) experience the highest prevalence and severity of Long-Covid symptoms (Ayoubkhani et al., 2021; Fernandez de las Penas, 2021; Johnsen et al., 2021; Taquet et al., 2021a, b). To my knowledge, researchers have yet to investigate any role of psychological variables in predisposing someone to develop Long-Covid, or in its onset and/or maintenance.

At present, there is no agreed upon cause or set of causes to explain why viral illnesses such as Covid-19 can trigger long-term conditions such as Long-Covid. Most infectious outbreaks, including SARS and Ebola, leave behind a 'long tail' or minority of people who remain chronically affected (Marshall, 2020). I have seen some speculation about the potential role of cytokines (to explain an over-active immune response), mitochondria (to explain a problem with how energy is produced at a cellular level), and ongoing covid infection (fragments of pathogens may linger in remote pockets of the body, beyond reach of the immune system, where they are periodically reactivated and cause harm (Proal & VanElzakker, 2021). I have heard colleagues talk of a functional theory, which posits that the symptoms of Long-Covid are a hypersensitive or over-protective body's way of taking care of itself by telling or forcing the person to stop, conserve energy, rest, and build back up slowly. None of these theories seems anywhere near sufficient to explain the complex, multi-systemic changes that characterise Long-Covid. My view is that Long-Covid and other long-term health conditions are probably multiply determined (i.e. no one cause) and indeterminate (i.e. different mechanisms or pathways, involving different sets of variables, can produce identical outcomes).

An experience beyond the physical symptoms

Long-Covid is a complex, heterogeneous clinical condition involving multiple, interacting components (briefly summarised in the Figure below. It can develop immediately or gradually after Covid-19 infection and even after a period of apparent recovery. It involves multiple physical symptoms, the most common of which seem to be mental and physical fatigue, breathlessness, cognitive changes (difficulty concentrating, switching between tasks, word finding and memory difficulties), chronic pain (usually joint pain), palpitations, and dizziness (NICE, 2020; Davis et al., 2021; Michelin et al., 2021).

The physical symptoms, quite predictably, have a range of consequences for the person's body and their life. For example, experiencing chronic fatigue, chronic pain, and/or breathlessness frequently disrupt people's sleep and make it very difficult to be physically active, often leading to weight gain and physical deconditioning. Long-Covid physical symptoms can profoundly affect different areas of a person's life, including self-care, mobility, housework, independence, relationships, leisure activities, exercise, and hobbies. Long-Covid often forces people to reduce or stop doing things that they enjoy and which define who they are. 

It is no wonder that Long-Covid has a significant impact on well-being and mental health. The person living with Long-Covid is set the very difficult task of trying to adjust to major changes to their health and functional abilities, revising their goals and standards for themselves and their life. It is common and understandable for people living with Long-Covid to feel anxious and worried about their health, their lives, and their future; to have difficulty making sense of and adjusting to Long-Covid and to at times feel down and fed up; to find living with cognitive changes and low energy levels frustrating and upsetting; to feel guilty and distressed that responsibilities and interests cannot always be fulfilled as usual; and to feel angry about the perceived causes of Long-Covid or wish that life was different. It is not easy to adapt. Symptoms can change over time and come and go unpredictably, which can be challenging, stressful, frustrating, tiring, and demoralising. Adjustment and recovery tend to be nonlinear and to take place over a period of time, and are probably best described as a 'journey'. Long-Covid may also have exacerbated or added to stressors that a person was already dealing with.

Psychological symptoms, in-turn, can influence everyday functioning and physical symptoms. For example, feeling frustrated and down can make people less likely to persevere; feeling anxious, worried, and stressed make it more difficult to problem-solve; and moving between extremes of coping and thinking increases the likelihood that someone will struggle to effectively work within their current limits, sometimes resulting in all-or-nothing 'boom and bust' physical exertion, which may exacerbate physical symptoms. Overall, a range of variables dynamically interact and influence one-another – and these are only the within-person effects.

Managing interactions and recruiting support

On top of what happens within individuals, interactions with other people also play an important role in helping or hindering recovery from long-term health conditions such as Long-Covid. It is a truism that facing any challenge is easier with other people's support. But to be supportive requires various things. 

Firstly, other people need to want to help. Unfortunately, long-term health conditions such as Long-Covid are still widely stigmatised. People living with Long-Covid are often either not believed or actively judged and labelled. Many people have told me that health professionals, workmates, managers, friends, and family have said things such as, "it's all in your head," "you're fine," "pull yourself together", "it isn't that bad," "you're lazy," and "you're selfish". Many people with Long-Covid and other long-term health conditions have told me that they have been asked to justify that they are genuinely unwell. People have sometimes been made to feel guilty for needing support, blamed, or made to regret things that they did or did not do. Sometimes the people around the person experiencing Long-Covid has a different perspective on how that person 'should' manage their health and about how bad it would be if they were to become infected with Covid-19 again. 

Other people are much more likely to be understanding and compassionate and to want to help if they understand. Directing people to credible, robust information may be possible sometimes and may sometimes help. I recommend two websites – yourcovidrecovery and longcovid.org – for clear, accurate information on Long-Covid and managing the physical symptoms. Further research and education are needed to help society recognise Long-Covid and other long-term health conditions as 'valid' (real) health problems.

I acknowledge that other people may not want to help, depending on a range of factors. Influencing others, helping them to understand, and recruiting their support are not always possible; some people may sap energy and (unintentionally) add an additional stress that the person with Long-Covid cannot at the moment deal with. The decision on whether to continue seeking support may boil down to whether the person with Long-Covid prioritises their own emotional and physical needs or other people's. 

For other people to support someone with Long-Covid also requires that they are capable. Friends and family may be dealing with their own challenges – and it is difficult for the person with Long-Covid to support others if they are already faced with a large number of their own challenges. Some families I worked with contained two people with Long-Covid. Involving other people and encouraging friends and family to seek support for themselves (e.g., via their GP) may help reduce stress levels in a household.

A final point to note about between-person effects is that in order to receive useful and timely support from other people, the person with Long-Covid has to first be aware of their health and psychological needs and to express those needs in a way that other people can hear. Like much of what I have discussed, this is much easier said than done… especially when experiencing high levels of stress, fatigue, cognitive impairment, etc. It is not easy to need other people, to temporarily set aside valued goals, to ask for help, to do less, to be unwell, and to show vulnerability. Sometimes other people's good intentions and acts are not what is needed at the moment and that is no one's fault. Being thoughtful about oneself, having honest, explicit discussions about what is and is not needed and helpful, acknowledging the hard (current) truths, having positive experiences together, and being kind, patient, and forgiving with each other go a long way towards collaborating and feeling understood and appreciated.

The role of psychologists

The clinical guidelines for Long-Covid (e.g. NICE, 2020) recognise that because it is a complex, multisystem illness, multi-disciplinary, holistic interventions are likely to be appropriate and useful. At present, there is no evidence-based treatment or intervention for Long-Covid – perhaps unsurprisingly given the recency of Covid-19. Nevertheless, good clinical governance makes clear that clinical services should be of high quality, effective, and efficient. Clinicians and researchers across the world are no doubt currently collecting data to inform what best to do, but it will be a long time before a robust body of evidence emerges. This leaves clinicians, policy makers, and service commissioners in a dilemma: should services and interventions only be provided once there is robust mass of high-quality evidence demonstrating effectiveness? Or should something be offered, even if in time, with robust evaluation, superior approaches are developed? The latter approach seems to have generally been adopted: Do the best we can, acknowledging that this is a fast-evolving field. 

I am not aware of any effective medications for Long-Covid. I am aware through various forums that, instead, self-help, group, and individual interventions are being delivered that draw upon evidence-based approaches for the physical symptoms that make up Long-Covid (e.g. existing interventions for chronic fatigue, chronic pain, compensating for cognitive changes, managing breathlessness, etc), combined with approaches and interventions for helping people adjust to long-term health conditions and evolving clinical experience. These interventions are generally being delivered by Psychologists, Physiotherapists, Occupational Therapists, and Nurses.

Psychologists can potentially contribute a great deal to designing clinical services and helping people with Long-Covid adjust to it and try to overcome it (existing data cannot yet speak to the time course of Long-Covid). As a profession, we bring strong leadership, critical thinking and psychological formulation skills, and a background of theory, evidence, and experience of supporting people to adjust to a wide-range of physical health conditions. We aim to collaboratively support people to reduce Long-Covid symptoms and improve functioning and quality of life. Psychologists are really good at being thoughtful, curious, and listening carefully to the people we work with about what they want and what seems to work. In the context of long-term health conditions being disbelieved and stigmatised, these approaches are not just valuable but critical, as they provide a foundation from which to collaboratively work towards overcoming problems.  

Psychologists also bring knowledge of alternative service delivery models, how to make best use of limited resources, and robust clinical governance. We can offer consultation, supervision, teaching, and training to widely cascade psychological ways of thinking and working, and influence service design and delivery. A promising approach seems to be to deliver a transdiagnostic or 'trans-symptom' group programme that is supplemented by individualised interventions from the multidisciplinary team as needed. The ethos adopted is 'self-management', which aims to empower people living with long-term health conditions to take control of managing their health. Self-management involves giving information, learning skills and strategies, and experimenting to discover what works and what does not and when and why; it involves learning and balancing what can be changed and when, and what needs to be adjusted to or accepted and when. 

Self-management of long-term health conditions is, of course, easier said than done. It is far from easy to try to prioritise health over other responsibilities and commitments, to balance different life areas and conflicting goals, to develop a new role or identity, and to cope with ongoing stress and uncertainty. Everyone falls into what might be called coping or self-management 'traps' from time to time, such as totally focusing on Long-Covid to the exclusion of other life areas, exclusively using avoidance to cope, or focusing entirely on change with less emphasis on acceptance. It is not easy to be patient and understanding with oneself when there is so much to deal with. Recovery is not something that can be done to or for the person with Long-Covid. Many people find a way to adjust to Long-Covid, but some people benefit from a psychologist's support.

Psychologists are also able to help people overcome additional Covid-related difficulties, such as complicated grief or posttraumatic stress disorder, using evidence-based interventions. I have observed several people experience what is probably best described as a specific phobia of Covid-19, characterised by feeling highly anxious about further Covid-19 infection and high levels of avoidance and impaired everyday life. Psychologists are also well-placed, if needed, to provide neuropsychological assessment and interventions – although at this stage it is not clear whether this is needed or useful, or whether cognitive changes may be secondary to other Long-Covid symptoms such as fatigue.  

Research

Psychologists also often bring research skills. For example, soon after the inception of the Long-Covid Service, in consultation with members of the Long-Covid multidisciplinary team and other Long-Covid services, I designed a service questionnaire to routinely collect data and inform clinical decision-making. The questionnaire is quick to complete (important due to cognitive impairments and fatigue) and gathers a large amount of clinical information. It is used by the team to identify potentially life-threatening physical issues (that require medical assessment); save assessment time (that can be used to discuss nuances and complexities); help provide matched care; track symptom changes over time; and evaluate service effectiveness. Where possible, existing measures with established psychometric properties were used. 

To my knowledge, existing and ongoing research studies measure the presence/absence of Long-Covid symptoms and functional impairment. In contrast, the service questionnaire measures the frequency of Long-Covid symptoms and impairment across different areas of life to gain a much more detailed and clinically useful understanding of individual experience and change over time. Talking to psychologists in other Long-Covid services, it is common to screen for depressive and anxiety symptoms and for people with Long-Covid to report frequent distress. It is an empirical question whether measures of depressive and anxiety symptoms have acceptable sensitivity and specificity to identify who most needs psychological support. I do wonder whether measures of the different facets of well-being (Oishi & Westgate, in press) would best capture how mental health and quality of life are impacted by Long-Covid. 

Psychologists are able to promote the value of routinely collecting data and to use this to evaluate services (so-called practice-based evidence), share good practice, and better-understand Long-Covid. There are many possibilities. For example, routinely collected data regarding Long-Covid symptoms, functioning, and mental health could be analysed using network analysis to clarify complex relationships and identify the most 'central' variables. Network theory hypothesises that reducing or eliminating these can potentially decrease the activation of connected variables (Borsboom & Cramer, 2013; Bringmann et al., 2019). Longitudinal service data might be used to identify the presence of different trajectories or subpopulations of people experiencing Long-Covid using latent transition analysis, which is likely to be valuable for developing individualised interventions and allocating limited resources. 

Driving forwards

Change is needed. Sadly, many people experiencing post-viral syndromes such as Long-Covid encounter stigma and a lack of support. There is a common lack of understanding, including among health professionals. Sometimes people with long-term health conditions are explicitly told that they are not unwell and that there is nothing that can be done for them. There is considerable ongoing controversy regarding the conceptualisation of long-term health conditions and the effectiveness of psychological therapy for long-term health conditions (e.g., Chalder & Willis, 2017; Fink & Schroder, 2010; Hughes & Tuller, 2021; Scott et al., 2021). 

As a psychologist, I subscribe to the biopsychosocial model: I believe that biological, neuropsychological, social, and psychological factors may each play a role in an individual's long-term health condition. I do not see a simple dichotomy between mind and body. Indeed, even if Long-Covid turns out to have purely biological causes, I would still see a role for psychologists in helping people manage and adjust to it. Furthermore, hypothesising that psychological variables may, in part, predispose, precipitate, and/or perpetuate Long-Covid (which, like all hypotheses, requires empirical testing) does not – to me – imply fault or blame towards the person experiencing Long-Covid. 

As discussed, there is also a question regarding whether services and interventions should only be provided once there is robust mass of high-quality evidence demonstrating effectiveness. I hope that an unforeseen benefit of the Covid-19 pandemic is that it catalyses further thought, education, funding, and research into long-term health conditions and developing and refining effective interventions. We need to reduce stigma and improve availability and access to evidence-based support and interventions. I see a crucial role for psychologists in driving forward research, clinical practice, and how services are designed and delivered. 

-        Dr Andy P. Siddaway is a Consultant Clinical Psychologist and Expert Witness.

Find many more coronavirus perspectives in our archive.

Editor's note: Originally published online 21 December 2021.

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