Information for GPs and other health professionals

Updated 6 September 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 following the resolution of the acute illness 1.

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.

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)20 and one in a diagram (can be accessed here)21.

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 diagnosis6,7,22-25.

Who is at risk?

To date (6 September 2021), multiple studies shown that the following factors are associated with an increased risk of having long COVID: having comorbidities26, and being female9,27-30 is associated with an increased risk of Long COVID21,31.  However, many reports of Long COVID are from patients who had a mild case of COVID-19 and were not hospitalised6,22,32, and in younger adults9,26,33. The most common comorbidities in people with Long COVID are diabetes, hypertension, cardiovascular disease, and obesity34,35.

How do I support patients with Long COVID?

As awareness of Long COVID increases among the public, patients are less concerned about the lack of care and empathy from others36,37, and more concerned about the intensity, duration and unpredictability of their symptoms18,38,39.

Health professionals are in a difficult position to support their patients because of the lack of information on clinical definitions or treatments. Therefore, it is vital listen to patients’ about their concerns and validate their experiences40,41.

Parents of children with Long COVID are also becoming increasingly worried as their children’s symptoms persist42,43.

Health professionals should recommend medical or self-management based on symptoms and comorbidities2, and, if required, refer patients to specialist services for multidisciplinary assessment and rehabilitation44-50.

Primary care professionals can also promote peer support and the use of reliable information sources, where appropriate2.

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

There are emerging anecdotal reports about Long COVID symptoms improving within a few days after patients receive their second vaccine shot51-53. However, only one non-peer-reviewed prospective study has been conducted so far54. One article suggests that the effects of the vaccine on Long COVID may be temporary or a placebo response55, and another proposed that it was patients who had existing chronic conditions before Long COVID who were seeing improvements, not those who had chronic conditions resulting from Long COVID56.  

A recent article in The Scientist57 published a list of the Long COVID studies underway around the world, and can be accessed here.

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

 

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

 

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. Coronavirus disease (COVID-19). World Health Organization. Coronavirus Web site. https://www.who.int/emergencies/diseases/novel-coronavirus-2019/question-and-answers-hub/q-a-detail/coronavirus-disease-covid-19. Published 2020. Updated 10 Nov 2020. Accessed 9 Dec 2020, 2020.

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.

13.      Darcis G, Bouquegneau A, Maes N, et al. Long-term clinical follow-up of patients suffering from moderate-to-severe COVID-19 infection: a monocentric prospective observational cohort study. International Journal of Infectious Diseases. 2021;109:209-216.

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).

15.      The many strange long-term symptoms of Covid-19 explained. [press release]. Vox Vox Media, LLC, 15 December 2020 2020.

16.      Huang C, Huang L, Wang Y, et al. 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. The Lancet. 2021;397(10270):220-232.

17.      Gorna R, MacDermott N, Rayner C, et al. Long COVID guidelines need to reflect lived experience. The Lancet. 2021;397(10273):455-457.

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.      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.

21.      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.

22.      Centers for Disease Control and Prevention. Late Sequelae of COVID-19. U.S. Department of Health and Human Services. Coronavirus Disease Web site. https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/late-sequelae.html#:~:text=Though%20there%20is%20limited%20information,16%2C%2018%2C%2028). Published 2020. Updated 13 Nov 2020. Accessed 8 Dec 2020, 2020.

23.      Broughton E. What are the long-term health impacts of coronavirus? Patient Platform Limited. https://patient.info/news-and-features/what-are-the-long-term-health-impacts-of-coronavirus. Published 2020. Updated 23 Sep 20. Accessed 9 Dec 2020, 2020.

24.      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.

25.      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.

26.      Daugherty SE, Guo Y, Heath K, et al. Risk of clinical sequelae after the acute phase of SARS-CoV-2 infection: retrospective cohort study. 2021;373:n1098.

27.      Nielsen KJ, Vestergaard JM, Schlünssen V, et al. Day-by-day symptoms following positive and negative PCR tests for SARS-CoV-2 in non-hospitalized healthcare workers: A 90-day follow-up study. International Journal of Infectious Diseases.

28.      Sykes DL, Holdsworth L, Jawad N, Gunasekera P, Morice AH, Crooks MG. Post-COVID-19 Symptom Burden: What is Long-COVID and How Should We Manage It? Lung. 2021;199(2):113-119.

29.      Menges D, Ballouz T, Anagnostopoulos A, et al. Burden of post-COVID-19 syndrome and implications for healthcare service planning: A population-based cohort study. PLOS ONE. 2021;16(7):e0254523.

30.      Sigfrid L, Drake TM, Pauley E, et al. Long Covid in adults discharged from UK hospitals after Covid-19: A prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol. The Lancet Regional Health – Europe.

31.      Cabrera Martimbianco AL, Pacheco RL, Bagattini  M, Riera R. Frequency, signs and symptoms, and criteria adopted for long COVID-19: A systematic review. International journal of clinical practice. 2021:e14357.

32.      “We have been totally abandoned” people left struggling for weeks as they recover from COVID at home [press release]. U.K.: British Lung Foundation, 26 June 2020 2020.

33.      Blomberg B, Mohn KG-I, Brokstad KA, et al. Long COVID in a prospective cohort of home-isolated patients. Nature Medicine. 2021.

34.      Lui DTW, Lee CH, Chow WS, et al. Long COVID in Patients with Mild to Moderate Disease: Do Thyroid Function and Autoimmunity Play a Role? Endocrine practice : official journal of the American College of Endocrinology and the American Association of Clinical Endocrinologists. 2021.

35.      Kashif A, Chaudhry M, Fayyaz T, et al. Follow-up of COVID-19 recovered patients with mild disease. Scientific Reports. 2021;11(1):13414.

36.      Kingstone T, Taylor AK, O'Donnell CA, Atherton H, Blane DN, Chew-Graham CA. Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID. 2020:bjgpopen20X101143.

37.      Ladds E, Rushforth A, Wieringa S, et al. Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality principles for services. BMC Health Services Research. 2020;20(1):1144.

38.      Theunissen M. COVID 19 coronavirus: ‘Long haulers’ speak of long-term virus effects. . NZ Herald2021.

39.      Sher L. Post-COVID syndrome and suicide risk. QJM: An International Journal of Medicine. 2021. *Not publicly available

40.      The Lancet. Facing up to long COVID. The Lancet. 2020;396(10266):1861.

41.      Sancak B, Kılıç C. A Psychiatrist's Own Experience of Long Covid: Looking Beyond the Psychosomatic Perspective. Psychiatria Danubina. 2021;33(2):250.

42.      Say D, Crawford N, McNab S, Wurzel D, Steer A, Tosif S. Post-acute COVID-19 outcomes in children with mild and asymptomatic disease. The Lancet Child & Adolescent Health.

43.      Simpson F, Chew-Graham C, Lokugamage A. Long COVID in children: the perspectives of parents and children need to be heard. 2021;71(706):216-216.

44.      Dani M, Dirksen A, Taraborrelli P, et al. Autonomic dysfunction in 'long COVID': rationale, physiology and management strategies. Clinical medicine (London, England). 2021;21(1):e63-e67.

45.      Parkin A, Davison J, Tarrant R, et al. A Multidisciplinary NHS COVID-19 Service to Manage Post-COVID-19 Syndrome in the Community. Journal of Primary Care & Community Health. 2021;12:21501327211010994.

46.      Sarfraz Z, Sarfraz A, Barrios A, et al. Cardio-Pulmonary Sequelae in Recovered COVID-19 Patients: Considerations for Primary Care. Journal of Primary Care & Community Health. 2021;12:21501327211023726.

47.      Bende F, Tudoran C, Sporea I, et al. A Multidisciplinary Approach to Evaluate the Presence of Hepatic and Cardiac Abnormalities in Patients with Post-Acute COVID-19 Syndrome-A Pilot Study. Journal of clinical medicine. 2021;10(11).

48.      Busatto GF, de Araújo AL, Duarte AJdS, et al. Post-acute sequelae of SARS-CoV-2 infection (PASC): a protocol for a multidisciplinary prospective observational evaluation of a cohort of patients surviving hospitalisation in Sao Paulo, Brazil. 2021;11(6):e051706.

49.      Moghimi N, Di Napoli M, Biller J, et al. The Neurological Manifestations of Post-Acute Sequelae of SARS-CoV-2 infection. Current neurology and neuroscience reports. 2021;21(9):44.

50.      Vanichkachorn G, Newcomb R, Cowl CT, et al. Post-COVID-19 Syndrome (Long Haul Syndrome): Description of a Multidisciplinary Clinic at Mayo Clinic and Characteristics of the Initial Patient Cohort. Mayo Clinic Proceedings. 2021;96(7):1782-1791.

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

52.      Bernstein L, Guarino B. Some long-haul covid-19 patients say their symptoms are subsiding after getting vaccines. The Washington Post. 17 March 2021, 2021.

53.      Satherley D. Coronavirus: Vaccines unexpectedly appear to fix 'Long COVID'. Newshub. 18 March 2021, 2021.

54.      Arnold D, Milne A, Samms E, Stadon L, Maskell N, Hamilton F. Are vaccines safe in patients with Long COVID? A prospective observational study. 2021:2021.2003.2011.21253225.

55.      Researchers are closing in on long covid: The results are alarming. The Economist. May 1st 2021, 2021.

56.      O’Donnell JS, Chappell KJ. Chronic SARS-CoV-2, a Cause of Post-acute COVID-19 Sequelae (Long-COVID)? Frontiers in Microbiology. 2021;12(2232).

57.      Balakrishnan SS. Mechanisms of Long COVID remain unknown but data are rolling in. The Scientist. Septmeber 1 2021, 2021.

 

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.