Information for GPs and other health professionals

Updated 11 January 2021

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 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.

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 uncommon2.

Some researchers are suggesting that long COVID is a spectrum3 or can be split into different phases defined by the amount of time symptoms are persisting for since initial COVID-19 diagnosis4,5.

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 symptom6,7, and one in ten after more than 12 weeks7-9.

What are the symptoms?

Symptoms are highly variable. They can differ from the typical COVID-19 symptoms. For example, the most common symptoms are fatigue, headaches, cough, anosmia, sore throat, chest pain and delirium10-14. Patients have also reported gastro-intestinal disturbances, skin rashes, metabolic disruption, muscle pain, fatigue, muscle weakness, and hair loss2,15-19.

An extensive review of published papers proposed to subtype the 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)20.

Fatigue is the most common symptom, and several pieces of research explain the reason as the involvement of the endocrine system21-24. Additionally, post mortem studies show SARS-CoV RNA was present in the pituitary gland, parathyroid, pancreas and adrenal gland21,25. According to NHS (National Health Service) directory, fatigue might be worse in certain situations, such as physical inactivity, poor sleep patterns, work pressure, caring responsibilities, low mood, anxiety, and stress. A contemporary study suggests microcirculation and endothelial dysfunction are associated with Long COVID-19 symptoms, specifically non-respiratory symptoms26. Cystitis and overreactive bladder symptoms after COVID infection, termed COVID-19 Associate Cystitis (CAC), are also reported by multiple studies27-29.

Oral cavity symptoms (such as 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 infection30.

Many organ systems may be involved, and symptoms vary from mild (e.g. loss of smell) to severe (e.g. stroke, psychosis)19. Two papers have presented summaries of Long COVID symptoms, one in list form (can be accessed here)31 and one in a diagram (can be accessed here)32.

There is no specific time course: symptoms can improve one week only for relapse to occur the following week, and this pattern can last for more than one year after initial diagnosis6,7,33-36.

Who is at risk?

To date (11 January 2021), more than half of COVID-19 patients report having experienced symptoms six months after recovery. Researchers at John Hopkins University found that minority groups have a higher incidence of Long COVID37. Sweden’s nationwide cohort study with children (<18 years) exhibited that even after eight weeks of follow-up, 36% of the participants (N = 133) had persistent symptoms38.

The occurrence of Long COVID is not linked to the severity of acute infection or being hospitalised with COVID-1927,28.

Some evidence has suggested that physical activity provides no protective role in Long COVID27,29, neither is the absence of comorbidities protective27,29-31. Even after vaccination, it appears that reinfection with COVID-19 can lead to Long COVID symptoms32. However, a blog from NIH suggested that vaccinated people who get infected, report less symptoms for long COVID.

How do I support patients with Long COVID?

NZ HealthPathways have local guidelines for the management of Long COVID. Click here to visit the page.

As awareness of Long COVID increases, patients are becoming more concerned about the intensity, duration and unpredictability of their symptoms18,52,53.

Therefore, it is vital to listen to patients about their concerns and validate their experiences54,55. The National Institute for Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) have jointly developed a guideline to identify, assess, manage and monitor the long-term effects of Covid-19. 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. Click here to read the guideline.

A group of Austrian professional groups recently published extensive guidelines for Long COVID symptoms and management. The paper can be accessed here

Parents of children with Long COVID are also becoming increasingly worried as their children’s symptoms persist56,57.

Health professionals should recommend medical or self-management based on symptoms and comorbidities2. 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 rehabilitation58-64. Primary care professionals can also promote peer support and the use of reliable information sources, where appropriate2.

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 treatment65.

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 - a large cohort (n = 1,726,683) from the USA exhibited an increased risk of kidney issues66. Regular monitoring of blood results and evaluating thrombotic risks67-69 are essential in Long COVID management. The Geriatric Rehabilitation Special Interest Group of the European Geriatric Medicine Society (EuGMS) developed guidelines for geriatric patients recovering from COVID-1970. An article discussing the guidelines can be accessed here.

A recent article in The Scientist71 published a list of the Long COVID studies underway around the world, and 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 infection72, stellate ganglion block73.

New research findings about Long COVID and how to best manage or treat it are being published frequently. This page will be updated as new peer-reviewed evidence and guidance becomes available.

Resources for GPs

Management of Long COVID

Biden Administration Announcement

Centres for Disease Control and Prevention

Johns Hopkins

Long COVID Management Pathway

National Health Service

NZ HealthPathways

Patient Safety Learning

Survivor Corps

UC San Diego Health

NICE guideline [NG188]

COVID END

 

Support Groups for Patients

Body Politic Support Group

Facebook group for Long COVID N.Z.

Facebook group for Long COVID U.K.

Long COVID group for kids

Patient-Led Research Collaborative

Twitter page for @LongCovidNZ

Your COVID recovery

 

Contact Us

For more information about this website or the information presented, please email us as longcovidnihi@auckland.ac.nz

 

References all references are publicly available unless otherwise stated.

1.       World_Health_Organization. A clinical case definition of post COVID-19 condition by a Delphi consensus. WHO;2021.

2.       Greenhalgh T, Knight M, A’Court C, Buxton M, Husain L. Management of post-acute covid-19 in primary care. 2020;370:m3026.

3.       Yelin D, Margalit I, Yahav D, Runold M, Bruchfeld J. Long COVID-19- it's not over until? Clinical Microbiology and Infection. 2021;27(4):506-508.

4.       Fernández-de-las-Peñas C, Palacios-Ceña D, Gómez-Mayordomo V, Cuadrado ML, Florencio LL. Defining Post-COVID Symptoms (Post-Acute COVID, Long COVID, Persistent Post-COVID): An Integrative Classification. 2021;18(5):2621.

5.       Becker RC. COVID-19 and its sequelae: a platform for optimal patient care, discovery and training. Journal of Thrombosis and Thrombolysis. 2021;51(3):587-594.

6.       King's College London. COVID Symptom Study. ZOE. COVID: UK Data Web site. https://covid.joinzoe.com/. Published 2020. Updated 9 Dec 2020. Accessed 9 Dec 2020, 2020.

7.       Office for National Statistics. The prevalence of long COVID symptoms and COVID-19 complications. Office for National Statistics; 16 Dec 2021 2020.

8.       Ayoubkhani D, Khunti K, Nafilyan V, et al. Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study. 2021;372:n693.

9.       Ayoubkhani D. Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 April 2021. Office for National Statistics. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1april2021. Published 2021. Updated 1 April 2021. Accessed 9 April 2021, 2021.

10.      LaVergne SM, Stromberg S, Baxter BA, et al. A longitudinal SARS-CoV-2 biorepository for COVID-19 survivors with and without post-acute sequelae. BMC Infectious Diseases. 2021;21(1):677.

11.      Ogoina D, James HI, Ogoinja SZ. Post-Discharge Symptoms among Hospitalized COVID-19 Patients in Nigeria: A Single-Center Study %J The American Journal of Tropical Medicine and Hygiene. 2021:tpmd210509.

12.      Akbarialiabad H, Taghrir MH, Abdollahi A, et al. Long COVID, a comprehensive systematic scoping review. Infection. 2021:1-24.

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14.      Chun HJ, Coutavas E, Pine AB, et al. Immunofibrotic drivers of impaired lung function in postacute sequelae of SARS-CoV-2 infection. JCI Insight. 2021;6(14).

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18.      Stefano GB, Ptacek R, Ptackova H, Martin A, Kream RM. Selective Neuronal Mitochondrial Targeting in SARS-CoV-2 Infection Affects Cognitive Processes to Induce 'Brain Fog' and Results in Behavioral Changes that Favor Viral Survival. Medical science monitor : international medical journal of experimental and clinical research. 2021;27:e930886.

19.      Bougakov D, Podell K, Goldberg E. Multiple Neuroinvasive Pathways in COVID-19. Mol Neurobiol. 2020:1-12.

20.      Yong SJ, Liu S. Proposed subtypes of postCOVID19 syndrome (or longCOVID) and their respective potential therapies. Reviews in medical virology. 2021:e2315.

21.      Bansal R, Gubbi S, Koch CA. COVID-19 and Chronic Fatigue Syndrome: An Endocrine Perspective. Journal of clinical & translational endocrinology. 2021:100284.

22.      Leow MKS, Kwek DSK, Ng AWK, Ong KC, Kaw GJL, Lee LSU. Hypocortisolism in survivors of severe acute respiratory syndrome (SARS). Clinical endocrinology. 2005;63(2):197-202.

23.      Wheatland R. Molecular mimicry of ACTH in SARS–implications for corticosteroid treatment and prophylaxis. Medical hypotheses. 2004;63(5):855-862.

24.      Alzahrani AS, Mukhtar N, Aljomaiah A, et al. The impact of COVID-19 viral infection on the hypothalamic-pituitary-adrenal axis. Endocrine Practice. 2021;27(2):83-89.

25.      Hanley B, Naresh KN, Roufosse C, et al. Histopathological findings and viral tropism in UK patients with severe fatal COVID-19: a post-mortem study. The Lancet Microbe. 2020;1(6):e245-e253.

26.      Charfeddine S, Ibn Hadj Amor H, Jdidi J, et al. Long COVID 19 Syndrome: Is It Related to Microcirculation and Endothelial Dysfunction? Insights From TUN-EndCOV Study. Frontiers in Cardiovascular Medicine. 2021:1702.

27.      Lamb LE, Timar R, Wills M, et al. Long COVID and COVID-19-associated cystitis (CAC). International Urology and Nephrology. 2022;54(1):17-21.

28.      Chancellor MB, Wills M, Timar R, et al. MP29-15 COVID-19 ASSOCIATED CYSTITIS (CAC): INCREASED URINARY SYMPTOMS AND BIOMARKERS OF INFLAMMATION IN URINE IN PATIENTS WITH ACUTE COVID-19. The Journal of Urology. 2021;206(Supplement 3):e496-e496.

29.      Lamb LE, Dhar N, Timar R, Wills M, Dhar S, Chancellor MB. COVID-19 inflammation results in urine cytokine elevation and causes COVID-19 associated cystitis (CAC). Medical hypotheses. 2020;145:110375.

30.      Rafałowicz B, Wagner L, Rafałowicz J. Long COVID Oral Cavity Symptoms Based on Selected Clinical Cases. European Journal of Dentistry. 2021.

31.      Leviner S. Recognizing the Clinical Sequelae of COVID-19 in Adults: COVID-19 Long-Haulers. J Nurse Pract. 2021:10.1016/j.nurpra.2021.1005.1003.

32.      Cash-Goldwasser S, Jones SA, Bochner A, L C, TR. F. In-Depth COVID-19 Science Review Resolve to Save Lives. 2021. https://preventepidemics.org/covid19/science/review/june-4-2021/. Published 4 June 2021. Accessed 9 June 2021.

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35.      Martin H. Covid-19: Call for more Long Covid study as those who have it still suffer a year on. Stuff 27 March 2021, 2021.

36.      Darley DR, Dore GJ, Cysique L, et al. Persistent symptoms up to four months after community and hospital-managed SARS-CoV-2 infection. Medical Journal of Australia. 2021;214(6):279-280.

37.      Vannorsdall TD, Brigham E, Fawzy A, et al. Rates of cognitive dysfunction, psychiatric distress and functional decline following COVID-19. Journal of the Academy of Consultation-liaison Psychiatry. 2021.

38.      Kahn R, Berg S, Berntson L, et al. Populationbased study of multisystem inflammatory syndrome associated with COVID19 found that 36% of children had persistent symptoms. Acta Paediatrica. 2021.

39.      Kayaaslan B, Eser F, Kalem AK, et al. PostCOVID syndrome: A singlecenter questionnaire study on 1007 participants recovered from COVID19. Journal of Medical Virology. 2021;93(12):6566-6574.

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46.      Belluck P. Some Long COVID patients feel much better after getting the vaccine. The New York Times. 17 March 2021, 2021.

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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.