Long COVID

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Updated 6 September 2021

The number of patients with Long COVID (also known as post-acute COVID syndrome (PASC), chronic COVID, long-haul-COVID) is high. Estimates from 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. It is estmated that 12-15% of children could have persistent symptoms post COVID-19 infection. 

Information for Patients

Information for GPs and other health professionals

 

Summary

  • Symptoms are highly varied and different from the typical COVID-19 symptoms. For example, the most common symptoms are fatigue, dyspnoea, chest heaviness and cough, muscle weakness muscle and joint pain, sleep difficulties, trouble standing for long periods of time, cognitive issues (brain fog, headaches), and fever. But patients have also reported anosmia, sore throat, delirium, gastro-intestinal disturbances, skin rashes, metabolic disruption, loss of smell and taste, severe dizziness, leg swelling, night sweats, poor thermoregulation, distal limb numbing, cysts, new-onset diabetes and allergies, and mental health conditions such as post-traumatic stress disorder (PTSD).

  • Long COVID duration since initial COVID-19 diagnoses can vary with symptoms lasting 12 weeks or fewer, to 12 months or more. Long COVID patients in the U.K. are calling for Long COVID statistics to be presented alongside deaths and case numbers so that the public know the long-term effects of getting COVID-19.

  • Four main risk factors for Long COVID suggested by several different researchers are a more severe acute illness, comorbidities, female, and older adults. The most common comorbidities in people with Long COVID are diabetes, hypertension, cardiovascular or heart disease, and obesity.

  • The issues Long COVID patients are facing are to do with uncertainty of symptom duration, fear at the intensity of their symptoms, their inability to return to work and life, and increasingly, parents worrying about their children presenting Long COVID symptoms.

  • The three leading explanations for Long COVID are, 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.

  • A Spanish prospective cohort study showed that more than half of their patients presented ongoing symptoms 12 months after their COVID-19 diagnosis. In Nepal, a prospective study demonstrated that approximately one month post diagnosis, 82% patients reported at least one new symptom. Similarly, a Mexican prospective showed 88% patients had at least one new symptom six months post diagnosis.

 

Long COVID Management

  • Clinical trials are underway to investigate the effectiveness of different drugs (e.g., montelukast, deupirfenidone), and breathing exercise to treat respiratory symptoms, and other drugs (e.g., tocilizumab, melatonin, adaptogens) to treat Long COVID. Trials investigating Long COVID fatigue are looking at exercise, vitamin C supplementation, intravenous vitamin C, and two drug trials investigating nicotinamide riboside. There are also trials investigating probiotics to help the gut and reduce inflammation.

  • New referral workflow processes are being developed to help determine the best care for patients with Long COVID using multidisciplinary clinics.  

  • A three-tiered approach proposed for Long COVID management: Level three involves primary care and self-management; level two involves multidisciplinary teams and level three involves specialist teams. This tiered structure could allow for delegation of responsibility whilst ensuring patients get proper care. 

  • Multidisciplinary rehabilitation strategies require extensive functional, clinical, and cognitive assessments as well as more facilities to enable assessments, and to care for the patients. In addition to giving patients the range of care they need this also reduces the need for patients to make multiple different appointments with multiple different specialists.

  • 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.

  • 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. The Ministry of Health has still not released information on whether the vaccine would be safe for those with Long COVID.

Announcements

  • President Biden announced that that those experiencing Long COVID in the U.S.A can qualify as having a disability and protection against discrimination.

  • 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.