The reality: Fatigue is the most commonly reported symptom in long Covid but there may be a number of different reasons for this. Some people with long Covid have a still active disease that needs full investigation and treatment and some people with long Covid have exercise intolerance meaning exercise may make their symptoms worse. Each person needs an individualised approach.
Long Covid is the term coined by patients to describe signs and symptoms that continue or develop after acute Covid‑19. NICE defines acute Covid-19 as signs and symptoms up to four weeks and long Covid as new or ongoing symptoms four or more weeks after the initial infection. NICE has further subdivided long Covid to include what they call ongoing symptomatic Covid‑19 – signs and symptoms from 4 to 12 weeks – and post‑Covid‑19 syndrome – 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. 1 NICE recommend considering referral to an integrated multidisciplinary assessment service (if available) any time from four weeks after the start of acute Covid‑19. Long Covid is a broad umbrella term and covers a wide range of symptoms with potentially different pathology.2 It is therefore important to understand what ‘type’ of long Covid the patient has before encouraging return to normal activity.
Whilst a higher proportion of people who were admitted to hospital developed long Covid, the sheer number of people who were infected and stayed at home means health professionals are as likely to be seeing it in people who had a ‘mild’ initial infections as those who were in critical care.3 Severity of long Covid symptoms is not directly related to the intensity of treatment for the infection4 and unlike hospital admission for Covid-19, long Covid is most common in working age women,2 suggesting it is not simply a long tail of recovery from a critical illness. Both children and older people report long Covid symptoms, albeit in smaller numbers.2
The Covid-19 virus appears to trigger a number of different responses including system-wide inflammation, micro embolism and autoimmune dysfunction. It can also result in multi-organ impairment (and it is unclear whether this is reversible or permanent). 2,5,6 New symptoms can continue to emerge up to six months after the Covid-19 infection7 and some people experience relapses,2 often described by patients as the ‘corona coaster’. A large US study8 examining clinical records demonstrated increased use of analgesics, antidepressants, antihypertensives and oral hypoglycaemics in the six months after a confirmed Covid-19 infection compared with a control group of patients who had not been infected.
A person who presents after a Covid-19 infection with palpitations and dizziness on exertion may have; deconditioned muscles following a critical illness, myocarditis, a thromboembolism, Postural Orthostatic Tachycardia Syndrome (POTS), exercise intolerance or a panic attack. Telling them to exercise without understanding which they have may be positively harmful. Routine diagnostic tests may not help. One study showed people with long Covid may have normal chest X rays but interstitial lung damage on subsequent MRI scans,9 even in people who were not admitted to hospital. Any exercise should be ‘symptom titrated’2 to the individual’s personal response.
Around 30% of people reporting long Covid symptoms experience anxiety and/or depression2 with some evidence this is neurological as well as psychological.10 Whilst a small number of people may have psychologically induced symptoms, anxiety is an entirely normal response to having alarming symptoms that no one can explain or give an idea how long they may last, let alone treat. Anxiety is intensified when people feel they are not being listened to by health professionals. It should therefore be assumed that long Covid symptoms have a physical basis until proved otherwise.
More research is currently underway to understand the different disease pathways and potential drug treatments. In the meantime, nurses can provide an invaluable role in supporting patients in a number of ways. Given the estimate that 14% of people who have had a Covid-19 infection will have long Covid symptoms at least six months later,7 it is likely that community nurses in all settings will be working with long Covid patients at some point.
Nurses can provide initial assessments and triage people who need further investigations. They can provide essential advice on self-monitoring, including pacing activities and recording what makes the patient feel better or worse, including whether they experience post exercise malaise. Accurate and detailed reports of symptoms may be of particular help when accessing specialist secondary care clinics. As experts in helping people manage long term conditions, nurses can help patients understand ‘red flag’ changes and discuss when to seek a medical practitioner consultation.
Nurses can also offer information on living with the many different symptoms, including breathlessness and ‘brain fog’ or cognitive dysfunction. Many people with long Covid have muscle pain and need advice on both pharmaceutical and non-pharmaceutical strategies to manage this. Autonomic disorder symptoms can be very distressing and people need help to develop coping strategies together with plans for a staggered return to work. Nurses can also give their patients advice on how to risk assess the interventions shared anecdotally online but which have yet to be researched.
What can you do to help your patients?
- Listen carefully to your patient and be alert for any symptoms that might indicate a need for medical investigations
- Provide advice of symptoms management, ranging from rashes to insomnia to pain.
- Keep up to date with the unfolding evidence and treatment options.
- Direct patients to reliable sources of up to date information
- National Institute for Health and Care Excellence. Covid-19 rapid guideline: managing the longterm effects of COVID-19. 2020. https://www.nice.org.uk/guidance/ng188
- NIHR Centre for Engagement and Dissemination. Living with Covid-19 – Second review 2021 https://evidence.nihr.ac.uk/themedreview/living-with-covid19-second-review/
- Department of Health and Social Care Coronavirus (Covid19) in the UK 2021 https://coronavirus.data.gov.uk/
- Townsend, L., Dyer, A.H., Jones, K., Dunne, J., Mooney, A.,Gaffney, F. et al Persistent fatigue following SARSCoV-2 infection is common and independent of severity of initial infection. 2020 Plos one, 15(11), p.e0240784.
- Ayoubkhani D, Khunti K, Nafilyan V, Maddox T, Humberstone B, Diamond I et al. Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study. BMJ 2021 372.
- Dennis A, Wamil M, Alberts J, Oben J, Cuthbertson DJ, Wootton D, Crooks M, Gabbay M, Brady M, Hishmeh L, Attree E. Multiorgan impairment in low-risk individuals with post-COVID-19 syndrome: a prospective, community-based study. BMJ Open. 11(3):e048391.
- Daugherty, S., Guo, Y., Heath, K., Dasmariñas, M., Jubilo, K., Samranvedhya, J. et al. SARS-CoV-2 infection and risk of clinical sequelae during the post-acute phase: a retrospective cohort study BMJ
- Al-Aly, Z., Xie, Y. and Bowe, B. High-dimensional characterization of post-acute sequalae of Covid-19. Nature 2021. https://doi.org/10.1038/s41586-021-03553-9
- D’Cruz, R.F., Waller, M.D., Perrin, F., Periselneris, J., Norton, S., Smith, L.J. et al. Chest radiography is a poor predictor of respiratory symptoms and functional impairment in survivors of severe COVID-19 pneumonia. ERJ Open Research https://openres.ersjournals.com/content/early/2020/10/15/23120541.00655-2020.short
- Guedj, E., Campion, J.Y., Dudouet, P. et al. 18F-FDG brain PET hypometabolism in patients with Long COVID. 2021 Eur J Nucl Med Mol Imaging https://doi.org/10.1007/s00259-021-05215