Updated 15 February 2021
The number of patients with Long COVID (also known as post-acute COVID, chronic COVID, long-haul-COVID) is high. Recent (December 2020) estimates from the Office of National Statistics (ONS) in the U.K report that around one in five people who have tested positive for COVID-19 report experiencing a range of health symptoms more than five weeks after their initial diagnosis and one in ten more than 12 weeks after diagnosis.
- Symptoms are highly varied and different from the typical COVID-19 symptoms. For example, patients report fatigue, headaches, cough, anosmia, sore throat, chest pain and delirium as well as gastro-intestinal disturbances, skin rashes, metabolic disruption, muscle pain, fatigue, and weakness. Recently, reports of other symptoms include loss of smell and taste, severe dizziness, leg swelling, night sweats, poor thermoregulation, lower leg and toe pain, distal limb numbing, cysts, new-onset diabetes and allergies, depression, anxiety, ‘brain fog’, and post-traumatic stress disorder (PTSD).
- There is no specific time course: symptoms can improve one week only for relapse to occur the following week, and this pattern can last from three weeks to more than six months. With increasing awareness about Long COVID, the issues patients now face are less to do with the lack of care and empathy from others, and more to do with uncertainty of symptom duration, fear at the intensity of their symptoms, and their inability to return to work and life.
- In addition to the surveys and case studies reported in 2020, research into what Long COVID is and how to treat these prolonged symptoms is gathering momentum. The ONS has announced its intention to estimate the prevalence and risk factors for Long COVID using the Coronavirus Infection Survey in 2021.
- Long COVID origin theories include that it is the result of an immune disruption, autoantibodies turning on the body and creating long-term damage to organs, low antibody response, and prolonged inflammatory response. More research and investigation into each of these theories is needed.
- Preliminary neurological studies using imaging in mice indicated that the virus moved from the lungs to the brain. PET scans in humans demonstrated differences in the deeper limbic structures of the brain between two COVID-19 patients and 20 age-matched controls.
- A cohort study of 1733 patients with COVID-19 discharged from Wuhan showed that the more severe the illness was whilst they were in hospital, the more severe their symptoms were six months later. A prospective cohort study in 238 patients hospitalized with COVID-19 demonstrated that over half had functional impairment four months post diagnosis, and 17% had PTSD.
Long COVID Management
- Internationally, self-management was the initial preferred method for patients with Long COVID. Now researchers are calling for multidisciplinary rehabilitation strategies that require extensive functional, clinical, and cognitive assessments as well as more facilities to enable these assessments, and to care for the patients.
- One report raised the concern about managing the cyclical nature of the symptoms since an individual could appear to have recovered from Long COVID only for the symptoms to reappear post discharge from a rehabilitation facility.
- There is full agreement that all rehabilitation plans should involve educating the patient and physicians in Long COVID management. All strategies emphasize the use of telehealth to deliver these plans, and that each plan should be individually tailored for the patient as each case of Long COVID appears unique to the individual. However, there is some disagreement as to what these strategies and plans entail regarding exercise and cognitive behavioural therapy (CBT) content.
- On the one hand, case reports and retrospective studies have indicated positive outcomes with a three-week graded exercise programme for Long COVID patients. On the other hand, if Long COVID is related to an immune disruption, the symptoms could be exacerbated by graded exercise and CBT, suggesting that isometric and seated exercises may be best.
- More research is needed into the optimal management of Long COVID, and more resources are needed to care for the growing number of Long COVID patients, especially in Low-Middle Income Countries, where the prevalence of Long COVID is unknown.
The information on this page was prepared by multi-disciplinary health professionals at the National Institute for Health Innovation and affiliates and was originally created on 9 December 2020.