Updated 14 May 2021
The number of patients with Long COVID (also known as post-acute COVID, chronic COVID, long-haul-COVID) is high. Estimates from the Office of National Statistics (ONS) in the U.K. report that within a four-week period over one million people experienced a range of health symptoms more than four weeks after their initial COVID-19 diagnosis and two thirds of those reported symptoms 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 one year. A recent analysis of NHS data showed than over approximately 140 days, nearly one third of people who were diagnosed with COVID-19 were readmitted to hospital. Some researchers are suggesting that long COVID is a spectrum or can be split into different phases defined by the time since initial COVID-19 diagnoses that symptoms are persisting.
- 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. One global multi stakeholder forum concluded that a) there needs to be a multidisciplinary and globally coordinated approach with large scale case controls and interventional studies across the range of populations and countries affected, and b) governments need to strengthen their health systems to provide treatment support and rehab for long COVID.
- The three leading explanations for Long COVID, 1. A persistent viral infection, 2. An autoimmune disorder, 3. A result of tissue damage from inflammation. These three explanations may not be mutually exclusive. 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
- New referral workflow processes are being developed to help determine the best care for patients with Long COVID using multidisciplinary clinics.
- 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.
- Recently, patients with Long COVID are reporting improvements in their symptoms after their second vaccine shot. However, these reports are anecdotal and only one (non-peer reviewed) prospective study has been conducted so far. Researchers are calling for caution and more research into vaccines for Long COVID sufferers, especially for children.
- Akili has announced two studies that will investigate a digital therapeutic treatment (EndeavorRx) for Long COVID brain fog.
- The ONS has begun to estimate the prevalence and risk factors for Long COVID using the Coronavirus Infection Survey in 2021. The ONS has published preliminary data from this study which can be found here.
- Scotland have announced funding for a National care service for those with Long COVID
- The National Institute for Health in the U.S. have announced a Congress funded initiative to research the cause and prevention of Long COVID over the next four years.
- Ireland have announced a large study on Long COVID to be completed in 2022.
- The New Zealand Ministry of Health are calling for proposals for Long COVID research but the amount to be funded is currently unknown
- NZ HealthPathways (https://www.healthpathwayscommunity.org/About) has developed local guidelines for management of Long Covid. Click here to visit the page.
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.