Updated 20 June 2022
What is Long COVID?
Long COVID (also known as post-acute COVID syndrome [PASC], chronic COVID, long-haul-COVID) is the name given to the symptoms some people may experience at least three months from the first appearance of COVID-19 and lasting at least two months. The symptoms may be new or persisting from the acute infection1, and for many, they will last for a year post initial infection2.
A positive COVID-19 test should not be seen as a pre-requisite for Long COVID as many people were not able or did not meet the criteria to get tested in the early stages of the pandemic, and false negatives are not uncommon3.
Researchers are suggesting that Long COVID is a spectrum4 or can be split into different phases defined by the amount of time symptoms are persisting since initial COVID-19 diagnosis5,6.
What is the prevalence of Long COVID?
Globally, around one in five people who have tested positive for COVID-19 report a range of health symptoms more than five weeks after their first symptom7,8, and one in ten after more than 12 weeks8-10. A recent report from the UK Government's Office of National Statistics (published 1 Jun, 2022) indicated 3.1% of its total population had self-reported Long COVID.
What are the symptoms?
To date, more than 20 symptoms involving multiorgan systems have been identified by researchers Symptoms are highly variable, but fatigue and sleep disturbance are the most common 2,11,12. According to US CDC, other common symptoms are dyspnea, post-exertional malaise (PEM), brain fog or cognitive impairment, headaches, cough, anosmia, myalgia, arthralgia, lightheadedness, sore throat, chest pain, mood change, and delirium13-19. Patients have also reported gastro-intestinal disturbances, skin rashes, metabolic disruption, dysgeusia, menstrual cycle irregularities, and hair loss20-25.
Researchers have proposed subtyping PASC into six categories; non-severe COVID-19 multi-organ sequelae (NSC-MOS), pulmonary fibrosis sequelae (PFS), myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), post-intensive care syndrome (PICS), and medical or clinical sequelae (MCS)31,32.
Involvement of the endocrine system may explain the fatigue commonly experienced by people with Long COVID 33-37. Post-mortem studies have found SARS-CoV RNA to be present in the pituitary gland, parathyroid, pancreas and adrenal gland33,38.
Other studies have linked depression or lower mood with post-COVID fatigue39,40.
A large cohort study41 (n = 236,379) and a Mendelian study42 have confirmed an increased risk of neurological and psychiatric diagnosis after COVID infection 43,44. Researchers have confirmed the persistence or re-appearance of neurological symptoms after COVID-19 (termed ‘Neuro COVID’). Hemiparesis, cognitive impairment, dementia, anosmia were most frequently reported symptoms that persisted till 6 months; while the incidence of stroke, dementia, and parkinsonism were the most common new symptoms45.
Studies with USA veterans data showed that there was an increased risk of cardiovascular diseases (CVD), including cerebrovascular disorders, dysrhythmias, inflammatory heart disease, ischemic heart disease, heart failure, thromboembolic disease, and other cardiac disorders in the 12 months following acute COVID-19 infection. The risk and 1-year burden of cardiovascular disease in survivors of acute COVID-19 were substantial (burden per 1,000 persons at 12 months is 23.48 for major adverse cardiovascular events), irrespective of age, race, sex and other cardiovascular risk factors (obesity, hypertension, diabetes, chronic kidney disease and hyperlipidaemia), previous history of CVD, and severity of acute phase of COVID-1946,47. Research with the same database showed people with COVID-19 exhibited an increased risk (HR 1·40, 95% CI 1·36–1·44) and excess burden (13·46, 95% CI 12·11–14·84, per 1000 people at 12 months) of diabetes48. Microcirculation and endothelial dysfunction associated with Long COVID symptoms; specifically non-respiratory symptoms are frequently reported50.
Cystitis and overreactive bladder symptoms after COVID infection, termed COVID-19 Associate Cystitis (CAC), are also reported by multiple studies51-53.
Oral cavity symptoms (e.g., discoloration, ulceration, and hemorrhagic changes on the oral mucosa, mycosis, aphthous-like lesions on the hard palate, atrophic cheilitis or salivary secretory disorder) are very common after the acute infection55.
Who is at risk?
To date (20 June 2022), more than half of COVID-19 patients report having experienced symptoms six months after recovery.7,8
Worldwide, researchers are seeking to understand the risk factors associated with Long COVID. The occurrence of Long COVID is not linked to the severity of acute infection or being hospitalised with COVID-1956-58;physical activity appears to provide no protective role in Long COVID56,59, and the absence of comorbidities is not protective56,59-61. Even after vaccination, it appears that reinfection or breakthrough infection with COVID-19 can lead to Long COVID symptoms62. Nevertheless, vaccinated people who get infected report less symptoms for Long COVID19.
The UK Government's Office of National Statistics (ONS) report published in January 2022, and a study from Johns Hopkins University63 suggested individuals from highly deprived areas have higher odds of Long COVID (cognitive score differed in John Hopkins’ study by t(79) = 3.32, P = 0.001). The UK ONS report confirmed that 1 in 100 students in primary schools has had Long COVID symptoms for more than 12 weeks. “Loss of taste or smell” was the most reported symptom. Students from primary and secondary schools with Long COVID symptoms showed higher mental health disorders than those without PASC, which is probably impact of low quality of life due to persistent symptoms.
There is some evidence from large studies in Sweden (nationwide cohort study)64 and Denmark (n= 115,559)65, that Long COVID symptoms in children (<18 years) usually resolve within 1–5 months.
How do I support patients with Long COVID?
NZ Health Pathways provides local guidelines for the management of Long COVID. Click here to visit the page. A comprehensive guideline for the health professionals will be published soon by the advisory groups of the MoH. The US CDC is regularly updating their website for healthcare providers. Click here to know more.
As awareness of Long COVID increases, patients are becoming more concerned about the intensity, duration, and unpredictability of their symptoms24,66,67. It is vital to listen to patients about their concerns and validate their experiences68,69.
The National Institute for Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) have developed guidelines to identify, assess, manage and monitor the long-term effects of Covid-19. Click here to read the guideline. It has recommendations for most healthcare settings across different age groups. It also highlights the need for patients to have easy access to multidisciplinary services (‘one stop clinics’) to avoid multiple referrals and help keep appointments to a minimum.
Parents of children with Long COVID are also becoming increasingly worried as their children’s symptoms persist70,71. Reassurance is important as studies suggested that Long COVID symptoms in children frequently resolved within 1–5 months65.
Health professionals should recommend medical or self-management based on symptoms and comorbidities20. The NHS (National Health Service, UK) COVID recovery website has symptom-based suggestions to manage Long COVID at home and can be accessed here. If required, refer patients to specialist services for multidisciplinary assessment and rehabilitation72-78. Primary care professionals can also promote peer support and the use of reliable information sources, where appropriate20.
Psychotherapies such as cognitive behavioural therapy may be useful for patients presenting with mental health conditions such as depression, anxiety or PTSD, in addition to pharmacological treatment79. COVID rehabilitation centres worldwide showing significant improvements of the Long COVID sufferers80-82.
Deep-vein thrombosis, pulmonary embolism, acute kidney injury and renal failure have been reported in Long COVID patients. Healthcare workers should pay special attention to renal function, 83 conduct regular monitoring of blood results and evaluating thrombotic risks84-86. Avascular necrosis (AVN) of bone (mostly, head of the femur) is a common presentation among those who received steroid treatment during acute infection87-91. Acute pain in the groin or shoulder should be investigated thoroughly. The Geriatric Rehabilitation Special Interest Group of the European Geriatric Medicine Society (EuGMS) developed guidelines for geriatric patients recovering from COVID-1992. An article discussing the guidelines can be accessed here.
Recently new research into novel treatments during the acute COVID infection indicate that they may reduce or lessen the experience of Long COVID, such as combined treatment with levocetirizine and montelukast during the active infection94, stellate ganglion block95.
Resources for GPs
Management of Long COVID
Support Groups for Patients
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References all references are publicly available unless otherwise stated.
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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.