Long Covid, or Post-COVID 19 syndrome, is defined as symptoms that persist for more than four weeks after the first suspected COVID-19 infection that are not explained by something else (NICE guideline NG188, Oct 2020).
Recent stats from the REACT project at Imperial College, London suggest that over 2 million UK adults are living with Long Covid.
Studies suggest that Long Covid can occur regardless of the intensity of the initial Covid-19 infection, with the mechanism still relatively unknown. Hypotheses include cellular metabolic dysfunction (Miller et al, 20), viral persistence (Hu et al, 20) and continued hyperactive immune response (Afrin et al, 20).
Long Covid can affect all body systems, with the most commonly reported being fatigue, chest pressure/ pain, breathlessness, loss of taste and smell and difficulties concentrating (“brain fog”) (ONS, 2021; Ziauddeen et al, 2021). Symptoms can overlap, relapse and return often with no obvious triggers.
65% of those surveyed by the Office of National Statistics report an adverse impact on day to day activities. This could be from having a shower to attending work. People of a working age are most likely to be affected, and the TUC survey of over 3 500 people report that of those reporting Long Covid symptoms, the response from employers has been varied with 52% experiencing some form of discrimination or disadvantage.
Covid-19 and Long Covid have not been around for that long. Long Covid was starting to be recognised in June, 2020 (Carfi et al 20) with NICE guidelines published in December 2020. Being a new condition does mean there is limited understanding of how Long Covid presents and how best to manage, or even recover from. As a patient with Long Covid said “It’s not like I’ve broken my leg. Doctors and others know what to do with a broken leg”.
Physiotherapists are well-placed to lead and provide Long Covid interventions. Physiotherapists promote a holistic view, recognising the impact of multi-physical systems and mental health on a person’s health. Physiotherapists are trained in recognising and managing acute and long term conditions from Neurology to Respiratory to Musculoskeletal systems and everything in between.
Physiotherapists are adaptable and can see the bigger picture, and with other healthcare professional groups, have been quick to respond during the Covid pandemic. One positive from the pandemic has been the easier access and sharing of material from webinars to free-access research and the plethora of support groups for those living with Long Covid and those in healthcare providing services.
The article will focus on Physiotherapy Long Covid support for work-age people who are living with Long Covid. Whilst referring to research evidence as much as possible, the author’s experience of providing a virtual-Long Covid service will also be shared.
Providing Long Covid Support
In a very short space of time, there is a lot we know about Long Covid, however there is also a great deal we do not.
What we do know is that the Long Covid presentation:
- does not seem to always be dependent on the severity or experience of the acute Covid-19 infection.
- can fluctuate and affect all body systems, often with no discernible physical evidence.
- with this, Long Covid symptoms might not be related to the virus, and must be checked out
- can trigger other conditions such as POTS
- can be affected by identifiable triggers such as lack of sleep, another illness, or just come and go
And that’s before we acknowledge the effect of a person’s beliefs, experiences and knowledge about health and themselves.
Due to the varied presentation of Long Covid, a “one size fits all” approach is not recommended. This not only refers to the interventions being provided but how they are being provided too.
There is also huge debate on how Long Covid should be managed, or even recognised, within healthcare and the wider social landscape, such as employment and return to work. The recent NICE publication on ME and graded exercise highlights how healthcare has disparately managed long term conditions for years, particularly those conditions with no easily identifiable physical cause. We are not only managing the beliefs and experiences of those living with Long Covid but those of our healthcare professionals too.
Physiotherapy is recognised as being an important component in the management of many Respiratory, Musculoskeletal and other health conditions (Bott et al 2006; NICE Low Back pain; NICE Rheumatology) and with that multi-system approach, many Physiotherapists are able to provide Long Covid support.
With fatigue and shortness of breath being the most reported Long Covid symptoms, we shall explore how Physiotherapy can provide valuable input.
It is important to note, with many people having managed their acute Covid symptoms without accessing healthcare, when managing their Long Covid symptoms, you may well be the first healthcare professional they have seen.
Shortness of Breath
Breathlessness (dyspnoea) is a debilitating symptom leading to a negative effect on quality of life, function, and wellbeing (Spathis et al 2017). Breathlessness could be caused by cardiac, respiratory, or other causes such as anxiety. Those with Long Covid can present with dysfunctional breathing, an umbrella term for describing a group of breathing disorders (Boulding et al 2016).
Dysfunctional breathing patterns include: breathing too deeply and/or too rapidly (hyperventilation) or erratic breathing interspersed with breath-holding or sighing and can be psychologically or physiologically based (Jones et al 2013).
There is also huge debate on how Long Covid should be managed, or even recognised, within healthcare and the wider social landscape, such as employment and return to work
Symptoms include breathlessness, chest tightness, dizziness and tremor, again commonly seen in Long Covid. Unexplained breathlessness and “air hunger” are predominant symptoms of dysfunctional breathing (Gardner, 1996) and again seen in those living with Long Covid. It should be noted that these symptoms can also be associated with other conditions such as POTS (Reilly et al 2020).
As well as a robust subjective questionnaire, a Physiotherapy objective assessment should include, where possible, respiratory rate, auscultation and observing breathing patterns (e.g. chest wall movement, nasal breathing, inspiration/ expiration volume).
Physiotherapy treatment would focus on two areas: education and breathing retraining.
Education includes the physiology of dysfunctional breathing and breathing control, with the effects external factors can have such as mood and lifestyle (Reillly et al 2020).
Breathing retraining would include breathing control (nasal breathing, normal respiratory rate, diaphragmatic breathing, inspiratory/ expiratory ratio) with the aim to slowly and progressively increase tolerance of the imposed breathing pattern and rate (Reilly et al 2020, Bott et al 2009).
The above are well recognised Physiotherapy techniques and used widely in many Respiratory patients from COPD to asthma. Their impact on Long Covid has, to my knowledge, not been published as of yet, however with many presenting with symptoms suggestive of dysfunctional breathing, Physiotherapy would be a recommended intervention (Motiejunaite et al 2021, Your Covid Recovery, NHS, 2021)
It is well recognised that the anxiety (or fear) of breathlessness can augment the perception of breathlessness (Spathis et al 2017). Anxiety is reported as a common symptom of Long Covid and understandably so: the fear of what might be, multi-layered symptoms to name but two. It is encouraged that all Long Covid services consider including self-reported anxiety and depression scales such as GAD-7 (Spitzer et al 2006) and PHQ-9 (Kroenke et al 2001) in order to provide appropriate support and education.
Fatigue is commonly reported as a symptom of Long Covid and can be hugely debilitating. It should be recognised that fatigue and being deconditioned are two different things and are managed as such.
Deconditioning can occur after a period of inactivity or from a sedentary lifestyle: the longer the inactivity the more severe the deconditioning (Elsevier Patient Education, 2021). It can make you feel tired, weak and decrease your ability to be active with recognised treatments including aerobic and strength exercises (Haseler et al 2019). The tiredness and other symptoms associated with being deconditioned behave within normal parameters, that is, recovery is short with strength and fitness improving by adhering to a continued rehabilitation programme (Falvey et al 2015).
This is a good moment to remind ourselves of the differences between physical activity and exercise. Physical activity is “any bodily movement produced by skeletal muscles that results in energy expenditure” whereas exercise is a subsection of activity, and defined as “planned, structured, and repetitive and has as a final or an intermediate objective the improvement or maintenance of physical fitness” (Caspersen et al 1985).
Before providing any kind of physical activity or exercise-based rehabilitation, it is important that risk stratification is completed to screen for cardiac impairment (Salman et al, 2021; World Physiotherapy, 2021). There is evidence of cardiac injury post Covid-19 infection (Imazio 2021), regardless of the severity of the acute Covid infection (Dennis et al, 2021), and those with Long Covid can present with a disproportionate breathlessness on exertion; inappropriately increased heart rate; and chest pain. Screening is of particular importance for those with physical jobs and indeed, with any increase in rehabilitation, would suggest continued monitoring for cardiac signs.
Fatigue can be defined as
- exhaustion during or after usual activities, or unable to start an activity due to lack of energy
- Extreme and persistent tiredness, weakness, or exhaustion of mental and/or physical origin that is not relieved by rest or sleep
- unpleasant physical, cognitive and emotional symptoms described as a tiredness not relieved by common strategies that restore energy. (NICE, Oct 2021)
A common side effect of fatigue is Post Exertional Malaise (PEM), an abnormal reaction of the body when too much energy, physical, cognitive or emotional, has been expended (World Physiotherapy, 2021). PEM is commonly seen in chronic fatigue conditions such as Myalgic encephalomyelitis (ME).
PEM symptoms include a general feeling of malaise, fever, “brain fog”, nausea, diarrhoea, widespread body pain and exercise intolerance (NICE guideline NG206, 2021). Symptoms can present up to 48 hours after the activity and can last for days or even months (Stussman et al, 2020). The variances of how the PEM presents, i.e. how much activity is required, does seem to be variable and individual to the person.
In managing fatigue, it is important to reduce the PEM baseline tolerance; as once the baseline is raised (from illness, over-expending energy), it takes much less activity to trigger a PEM response (Stussman et al, 2020).
The management of Long Covid fatigue is based upon important work completed in ME and chronic fatigue syndrome
The management of Long Covid fatigue is based upon important work completed in ME and chronic fatigue syndrome. There has been much controversy regarding graded exercise and fatigue with a delay in the revised NICE guidelines for ME and chronic fatigue syndrome. There is evidence that graded exercise programmes, that is fixed incremental increases in the time spent being physically active, can exacerbate PEM. This includes exercise programmes traditionally used for deconditioning which often include aerobic and strength exercises.
WHO recommends that Long Covid Rehabilitation should include education on resuming activities at “an appropriate pace that is safe and manageable for energy levels within the limits of current symptoms and should not be pushed for post-exertional fatigue.” (WHO, 2021) This is not the time to “push on through”.
Physiotherapists can provide support for those with fatigue. Energy management is key and often it is very difficult to establish what might be triggering the fatigue, from physical to cognitive and emotional. It is important to remember that fatigue is individual to the person with their own triggers and levels of energy expenditure.
Planning, pacing and prioritising remain the cornerstone of fatigue management, and Physiotherapists, with their background in goal setting and problem solving, can offer valuable guidance in this trickier-than-it-sounds concept. Pacing is defined as breaking down any activity to make them more manageable, interspersed by rest and relaxation (World Physiotherapy, 2021). The key aim being to complete the activity without any exacerbation of symptoms (Physiosforme).
Activity diaries can be useful in establishing patterns in emotional, cognitive and physical activities and their effects on fatigue. This would include sleep patterns and rest. The diaries can be particularly helpful considering that fatigue can occur up to 48 hours post energy expenditure.
During exercise, it is seen that those with chronic fatigue present with “oxidative impairments”, that is a disruption of the aerobic system during activity. This may explain why there is often a reduced exercise tolerance in those with fatigue (Todd et al 2010). Heart rate monitoring is a rehabilitation approach in which heart rate at rest and during activity is used. By using heart rate wearables or manually taking heart rate, it allows the individual to be aware of their heart rate and pace accordingly avoiding triggering an anaerobic response (Todd et al 2010).
It can be challenging to manage and recognise the energy expenditure from emotions and cognitive tasks.
The management of Long Covid fatigue is based upon important work completed in ME and chronic fatigue syndrome.
However, the concept of “energy spoons” or “energy envelopes” is a helpful way for those with fatigue to moderate their energy, but also to explain to others how fatigue works. Essentially, you have enough energy, in the form of spoons or an envelope, to expend each day. Establishing how much energy activities will take allows the individual to self monitor and regulate, leading to better management of their fatigue (Miserandino 2003; Jason et al 2013).
All these fatigue-management strategies promote self-management by self-monitoring and self-regulating.
Physiotherapists can provide valuable input into the support of those living with Long Covid. Taking a holistic review, and utilising multi-system skills, Physiotherapists are able to assess, advise and support not only through recognised Physiotherapy skills but also through change behaviours and effective signposting.
Living with Long Covid can be debilitating, frustrating and worrying. It is important, whatever our profession, that we acknowledge the impact of Long Covid on the individual and offer considered support based on the current evidence base.
Colette Owen is the Clinical Director at Bespoke Wellbeing, an award-winning Occupational Health Physiotherapy company which provides virtual and face-to-face Physiotherapy, Ergonomics, Occupational Health and Long-Covid services.
Colette qualified over 20 years ago and has worked extensively within the NHS, Private and Corporate in clinical, managerial, academic and leadership roles. Clinically, Colette has vast experience in musculoskeletal disorders, long-term condition management and chronic pain.
The Bespoke Wellbeing Long Covid programme was launched in February 2021 to support those living with Long Covid and returning to the workplace.