A Complex Diagnosis
The frequently changing and multisystem sequalae of Covid-19 result in inconsistent consensus on diagnostic criteria for ongoing Covid-19. Failure to recognise a spectrum of ongoing and frequently changing symptomology, together with a media focus on mortality rates, creates anxiety in those with ongoing symptoms (NIHR, 2020). In addition, the UK Government sent a clear message to the public to stay away from health services “unless severely ill”, leaving many, including those already suffering long-term chronic health conditions, uncertain about when to seek help.
In October 2020 NICE case definitions for stages of COVID-19 changed to include Post Covid-19 Syndrome in order to assist the GP referral process for treatment. The guidance defines Post Covid-19 Syndrome (PC19S) as “signs and symptoms that develop during or following an infection consistent with Covid-19, continue for more than 12 weeks and are not explained by an alternative diagnosis”. Usually, presentation is via clusters of symptoms, often overlapping, which fluctuate and change over time affecting any system in the body including, but not limited to:
- haematological and autonomic systems
- psychiatric problems,
- generalised pain,
- persisting fever
The Symptom study app (KCL, 2020) identified two main Long-Covid symptom groupings; respiratory issues; shortness of breath, fatigue and headaches; and a multi-system grouping affecting the brain, gut and heart with sufferers reporting heart palpitations, pins and needles, numbness and concentration issues. This indicates that respiratory issues and fatigue are highly prevalent among post-Covid populations.
Research indicates that post-Covid patients display significant inflammation of the lung tissue, compromising lung function and dramatically reducing oxygenation levels. In addition, respiratory muscles may atrophy due to immobilization and psychological trauma known as Acute-Respiratory Distress Syndrome (ARDS) (Geier and Geier, 2020). ‘Ground glass opacites’ may remain and for those necessitating intubation and mechanical ventilation, there may be injury to the larynx and trachea which can disturb speech and cause dysfunctional breathing patterns (Zantah et al., 2020).
Covid-19, like many flu-like illnesses leads to unpleasant malaise and severe, acute fatigue (Borges do Nascimento, I.J., et al (2020) with a prevalence of 10% at three months. Post-viral fatigue studies have shown that blood concentration of IL-6 and IL-10 in the acute phase predict the subsequent development of chronic fatigue (Russell et al. 2019), and the same pro-inflammatory markers are being seen in the cytokine storm of severe Covid-19 (Williams, 2020).
Following the 2003 SARS outbreak, a post-SARS syndrome was described, with the same phenotype as post-viral chronic fatigue syndrome. The long-term adverse effects were poor sleep, fatigue, myalgia and depression. “There are so many similarities between long Covid and ME/Chronic Fatigue Syndrome (CFS) it leads me to believe the underlying pathology is probably the same, except that Long-Covid is presenting as an epidemic, whereas CFS has presented in a very sporadic way, and by no means in such large numbers in such a short space of time,” Dr William Weir, The Guardian (2020).
Why does it happen?
The reasons behind long COVID are still unclear and immunology studies on the subject are ongoing. Three possible scenarios underlying long COVID symptoms have been hypothesised: (Vagnoni, 2020):
- a reservoir of virus, hiding and reactivating.
- virus particles not eliminated by the body activating an immune response.
- an autoimmune disease generated by the infection.
One theory suggests that the spread of coronavirus through the body leads to widespread and intensive activation of inflammatory defences. The term ‘cytokine storm’ has been used to describe the extremely high levels of inflammatory cytokines observed in the blood of hospitalised patients with severe Covid-19. Inflammatory cytokines have long-term health consequences and inflammation may worsen pre-existing conditions as well as also cause them. Secondary illness such as inflammation induced cognitive decline, psychosis, mood disorder and fatigue may persist for years (Immunology.org, 2020).
Current Treatment & Rehabilitation Guidelines
In July 2020 the NHS launched ‘Your Covid Recovery’ offering initial assessments with rehabilitation teams comprising physiotherapists, nurses and mental health specialists, followed by a 12-week personalised package of online-based aftercare (NHS England, 2020).
Following revised guidance in October 2020 from National Institute for Health and Care Excellence (NICE), the NHS announced designated Long Covid clinics in each part of the country to provide joined-up care for physical and mental health providing patients with access to:
- Physical assessments to identify chronic health issues
- Cognitive assessments to assess memory, attention and concentration problems
- Psychological assessment to assess depression, anxiety, PTSD or other mental health conditions
The Royal College of GPs anticipates a significant “influx of patients with lingering Long-Covid illness, both physical and emotional (RCGP, 2020). Rehabilitation guidelines are to alleviate dyspnoea, anxiety and depression, with the long-term aim of preserving lung function to improve quality of life. Current prescription for respiratory rehabilitation includes aerobic exercises such as walking, jogging and swimming, starting gradually and building up over time; and respiratory training for those with shortness of breath and wheezing, including body position management. Recovery is possible but can require therapy and long-term practice of exercises (Hopkins Medicine, 2020).
The Breathlessness Guide (KLC, 2020) offers several steps for management of breathlessness, advising ‘belly breathing’ and ‘slowing down the breath’. Clinical trials are underway in Italy (ClinicalTrials.gov, 2020), exploring the effects of a daily three-cycle protocol of ‘deep yoga-based breathing for vagal nerve stimulation as a home-care adjuvant treatment against burden Covid-19’.
In November 2020, NICE removed the longstanding recommendations that patients with persistent fatigue be prescribed graded exercise therapy (GET). The recommendations stress that GET causes lasting damage to people’s health, and that exercise is not a treatment or cure for persistent fatigue and should not be presumed safe.