Understanding Long COVID Syndrome
COVID-19 has defined our lives over the past months and brought the world to a standstill in a way that we could never imagine possible prior to the onset of the pandemic. Not only has COVID cut short the lives of millions of people around the world, there is evidence that there are long-lasting effects of the virus on many that survive the initial infection. There is currently no clear definition for the condition: terminology has included “long COVID,” “post-COVID syndrome” and “post-acute COVID-19 syndrome”. Among the lay public, the phrase “long haulers” is also being used (1).
So, what exactly is long COVID?
It is a term that is used to describe illness in people that either have recovered from the acute infection but still report lasting effects of the infection or have the usual symptoms that last longer than expected. In the UK, NICE, in partnership SIGN and RCGP, have published a guideline which defines ongoing symptomatic COVID for people who still have symptoms between four and 12 weeks after the start of acute symptoms and post-COVID-19 syndrome for people who still have symptoms for more than 12 weeks after the start of acute symptoms. Long COVID therefore includes both ongoing symptomatic and post-COVID-19 syndrome (2,3). The condition seems to affect about 10% of people with COVID and does not correlate to the severity of the initial infection. There seem to be multiple symptoms which vary widely in pattern and severity of symptoms from patient to patient which include respiratory, cardiac, neurological, gastrointestinal, metabolic, thromboembolic, dermatological, and psychiatric. The most common symptoms include cough, low grade fever and severe fatigue (4), but we have yet to understand why some patients develop long-term symptoms and others do not.
For many people, the long-lasting symptoms can be so debilitating that it affects the ability to function normally, including their ability to work. One patient-led study found that many patients had not returned to their previous level of work by six months and of that 20-24% were not working at the time of the survey due to their health condition (5). This will have significant financial implications on the individuals and their families, but this will also mean a lot of expertise and knowledge these individuals bring will be lost from the workplace if we do not find a way to manage and treat long COVID.
Many of those suffering from long COVID feel that there is difficulty accessing adequate healthcare services for their symptoms and some have even encountered dismissive behaviour from health care professionals (6). The UK has spent millions of pounds setting up long COVID clinics and has published guidelines on diagnosing and managing patients with long COVID. The current guidelines include guidance on taking history, which includes finding out about the impact of the disease on daily life as well as any deterioration physically, psychologically or socially. Investigations are initially aimed at ruling out any life-threatening conditions. Tests also include blood tests, chest x-ray for ongoing respiratory symptoms and exercise tolerance tests for breathlessness and change in heart rate and oxygen saturation.
The guidance on management includes referral for any acute life-threatening complications as well as specialist referral based on the symptom profile of the patient and signposting support from services such as social care, housing, employment and financial support (7). Despite this, many patient groups feel that the available guidelines are not comprehensive enough and do not adequately reflect the many lived experiences of people suffering from long COVID (6). When the pandemic first started there was a shortage of COVID tests and as a result many patients who did not meet the strict criteria were not tested. In some countries, such as Canada, where they have limited long COVID clinics and no clear guidelines for doctors, patients are not currently accepted without a positive COVID test, shutting a lot of people out of the long COVID clinics (8). While first world countries have the funding to be able to set up guidelines and treatment clinics, many countries in the developing world will not have the financial means to do so.
Currently the primary focus of most countries is to try and vaccinate as many people, as quickly as possible in order to control the pandemic and reopen economies. Going forward, there needs to be more focus and research into the pathophysiology of long COVID. Only once we know what pathology is behind the symptoms, will we be able to develop targeted treatments for the symptoms. A universal set of guidelines needs to be formulated in order to help health care workers all over the world diagnose and manage patients with long COVID. There needs to be consultation with patients’ groups representing those suffering from long COVID during formulation of these guidelines. Like the COVAX initiative which is helping low- and middle-income countries access the COVID-19 vaccine, the international community needs to come together in order to help LMICs both financially and logistically to deal with the effects of long COVID. With the race to vaccinate against COVID-19 ongoing, many may feel the end of the pandemic is in sight but, due to long COVID, the strain on the health care systems and economies around the world will not end anytime soon (9).
ID Society. Post COVID/Long COVID. ID Society. [External Link] Published 20 Jan 2021. Accessed 21 March 2021.
Mahase, E. Covid-19: What do we know about “long covid”? BMJ 370 [External Link] Published 14 July 2020. Accessed 20 March 2021.
Venkatesen, P. NICE guideline on long COVID. The Lancet. https://doi.org/10.1016/S2213-2600(21)00031-X Published 13 January 2021
Greenhalgh, T., Knight, M., A'Court, C., Buxton, M., Husain, L. Management of post-acute covid-19 in primary care. BMJ 2020; 370 [External Link] doi: https://doi.org/10.1136/bmj.m3026. Published 11 August 2020.
Davis, H.E., Assaf, G.S., McCorkell, L., Wei, H., Low, R.J., Re’em, Y., Redfield, S., Austin, J.P., Akrami, A. Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact. medRxiv 2020.12.24.20248802; doi: https://doi.org/10.1101/2020.12.24.20248802 Published 27 December 2020
Gorna, R., MacDermott, N., Rayner, C., O'Hara, M., Evans, S., Agyen, L., et al. Long COVID guidelines need to reflect lived experience. The Lancet. Published December 21, 2020. DOI:https://doi.org/10.1016/S0140-6736(20)32705-7
NICE. Workplace health: long-term sickness absence and capability to work. NICE. [External Link] Published 20 November 2019. Accessed 21 March 2021.
Prévost-Manuel, J., Foxcroft, T., Common, D. 60% of COVID-19 long-haulers say government is 'absolutely ignoring them,' Marketplace questionnaire finds. CBC. [External Link] Published 23 January 2021. Accessed 20 March 2021.
Komaroff, A. The tragedy of long COVID. Harvard Health Blog. [External Link] Published 1 March 2021. Accessed 21 March 2021.