Written by Pedro Toscano


What is Long COVID?

Long COVID, or long-term COVID, is a term used to describe the long term effects of COVID-19 that affects some people for several weeks or months after the initial onset of the disease (Shah et al.,2021).

COVID-19 (SARS-CoV-2) is an illness caused by the coronavirus (CoV-2). It is part of a family of other similar viruses that were responsible for causing the SARS-I outbreak in China in 2002 and the MERS outbreak in the Middle East in 2012. Both of these viruses also caused a small proportion of people to have symptoms for a long period of time (Carfi et al., 2020, Yelin et al., 2020).

Post-COVID syndrome is a term specifically used for symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks, and are not explained by an alternative diagnosis (Carfi., et al 2020, Shah et al.,2021, Yelin et al., 2020).

Long COVID on the other hand, can be considered from 4 weeks after the onset of the first symptoms, and it is an interchangeable term with Post-COVID syndrome after 12 weeks of ongoing symptoms (Carfi., et al 2020, Shah et al.,2021, Yelin et al., 2020).

It is currently estimated that approximately 20% of people infected by COVID-19 are asymptomatic – that is, do not have any symptoms. Most people who are symptomatic, according to data from the NHS COVID tracing app, completely recover within 3 to 4 weeks. Approximately 14% of people have symptoms that last for at least 4 weeks, 5% of people have symptoms for at least 8 weeks, and 2% of people have symptoms for more than 12 weeks (Sudre et al., 2020).

So far there is no evidence showing that people who have had more severe symptoms at the onset of the disease, or even that have been hospitalised, will progress on to have Long COVID. There are people who continue to experience symptoms for a long period of time despite having had a relatively mild manifestation of the disease (Shah et al.,2021).

What are the signs & symptoms of Long COVID?

The symptoms experienced during Long COVID are not necessarily the same – in fact are often different, from the symptoms experienced during the acute (initial) stage of the illness. Long COVID usually presents with clusters of variable symptoms, which can fluctuate and change over time and can affect any system in the body (Carfi et al., 2020, Ladds et al., 2020).

Often the symptoms of Long COVID are dominated by respiratory complaints such as breathlessness, cough, fatigue, and also headaches. However many patients report multi-system complaints Among the most common are: chest tightness, palpitations, joint or muscle pain, ‘brain fog’, loss of concentration, dizziness, pins and needles or numbness in different parts of the body, nausea, diarrhoea, reduced appetite, loss of taste and/or smell, sore throat, hoarse voice, anxiety, depression, skin rashes, and others. People may experience only a few of these symptoms at any given time (Goërtz et al., 2020, Sudre et al., 2020).

What causes some people to develop long term COVID?

We are not yet sure what causes some people to develop symptoms for long periods of time while the majority of other people recover within 3 to 4 weeks. Long term symptoms were also seen in the MERS and SARS-I diseases and were dominated by decreased lung function, reduced exercise capacity, and psychological impairment (Ahmed et al., 2020, Lam et al., 2009).
So far according to the evidence, the likelihood of developing Long COVID is not thought to be linked to the severity of the acute COVID-19 illness (including whether the patient has been in hospital). However, people who have been in hospital, especially in ICU, might take longer to recover. This is due to secondary problems such as pneumonia, immobilisation, lung lesions and scarring. Commonly caused by prolonged inflammation or prolonged ventilator use due to respiratory failure, hypotension, invasive procedures and sleep and psychological disturbances that collectively form what is referred to as Post-intensive Care Syndrome (Del Rio et al., 2020).
It has also been observed that some people’s immune system is up-regulated by the CoV-2 virus which causes it to overreact and create a powerful, stronger than needed response (cytokine storm) that can then lead to wide-spread inflammation across the body. In some cases the heightened and overactive immune cells can start attacking the body’s own cells and tissues. In effect this can produce different symptoms across the body depending on which tissues or cells are being targeted by the immune system’s cells (Tay et al., 2020).

Besides ongoing COVID-19 symptoms, increased inflammation, and possible damage to organs such as lungs or heart, another possible cause of long term COVID symptoms is Post-viral Fatigue Syndrome (PVFS) (Goërtz et al., 2020) . PVFS is a persistent state of ill health triggered by a viral infection that affects multiple body systems. It is characterised by extreme fatigue and other symptoms that might include loss of energy, muscular aches and pains, and intermittent flares of viral symptoms.

Where for example an individual has returned to work but uses their weekends to recover from fatigue, or is struggling with basic daily tasks, it is worth considering PVFS. With PVFS there is a possibility of developing a condition called Myalgic Encephalomyelitis (ME – often known as Chronic Fatigue Syndrome or CFS) (Goërtz et al., 2020, Hickie et al., 2006, Moldofsky and Patcai 2011). Previous outbreaks of SARS and Epstein Barr saw a 10% increase in the number of patients diagnosed with ME/CFS (Ahmed et al., 2020).

A hallmark symptom of ME/CFS is post-exertional malaise (PEM), which is an intolerance to previously achievable mental or physical exertion. This can go on to cause a significant worsening of symptoms after sometimes minimal exertion which can be delayed for 24 to 72 hours after the physical or mental exertion, and can take days or weeks to recover from.

While in most diseases patients experience some relief of symptoms after exercise, the opposite is true in ME/CFS. Its delayed onset is characteristic and different from other diseases that get worse with exercise but this happens rather quickly as opposed to the delayed onset. For this reason it is important that Long COVID patients rule out Post-exertional malaise prior to starting any type of exercise programme in a safe manner (Goërtz et al., 2020, Hickie et al., 2006, Moldofsky and Patcai 2011, Torjesen 2020).

Are there any risk factors in developing Long COVID?

It is still not certain if there are any risk factors in developing the condition. This is due to how new Long COVID is and the fact there isn’t yet a lot of good quality data on risk factors for Long COVID.

In the acute stage of COVID-19 infection, it has been found that people with pre-existing conditions, particularly cardiovascular or immune conditions, have a greater risk of a more severe disease. For this reason are therefore more likely to require hospitalisation which can lead to a longer recovery time. Other factors that have been linked to a more severe acute COVID-19 disease include asthma, diabetes, vitamin D deficiency, kidney disease and thyroid disease (Assaf et al., 2020, Carfi et al., 2020, Halpin et al., 2021).

However this is less clear regarding Long COVID because many people without any pre-existing conditions and in good health are taking several weeks or months to recover. So far it seems the strongest predictor of developing Long COVID is age, particularly above 70 years of age. This is followed by the number of symptoms in the first week, that is, the more different symptoms were experienced during the first week of infection, the more probability there is of having a longer recovery time.

Asthma, and a high BMI, were also linked to an increased risk of Long COVID.
This was not shown yet for other pre-existing conditions, unlike the risk factors for severe acute COVID which are more correlated to several chronic conditions listed above (Petrilli et al., 2020, Tenforde et al., 2020).

How long does Long COVID last?

Due to the fact COVID-19 is a new disease, there is no data yet showing the progression of a small minority of patients whose symptoms last beyond 6 months.

Fortunately it seems that most people in Long COVID rehabilitation clinics recover, although slowly. It is still unclear the overlap that is sometimes seen with ME/CFS (Chronic Fatigue Syndrome) (Assaf et al., 2020, Tenforde et al., 2020).

Some researchers suggest there might be parallels with other coronavirus diseases. After SARS-I a minority of patients experienced long-term illness with widespread fatigue, pain, disturbed sleep, depression, and some cases of Post-traumatic stress disorder (Lam et al., 2009, Mak et al., 2009, Moldofsky and Patcai 2011) ,as well as altered respiratory function and exercise tolerance (Ahmed et al., 2020).

How is Long COVID diagnosed?

Long COVID is a clinical diagnosis. It is based on a medical assessment and a history consistent with acute COVID-19 followed by a prolonged recovery, that is not explained by an alternative diagnosis . This manifests in many different ways but is usually dominated by fatigue and breathlessness. For people who are concerned about new or ongoing symptoms 4 weeks or more after acute COVID-19, they can be offered an initial consultation by video, phone or in person, with their GP or local hospital (Shah et al., 2021).

What are the treatment options for Long COVID?

There is ongoing research looking into the treatment options for long term COVID. The NHS has created an online platform called Your COVID Recovery which consists of an interactive self-management programme and tailored advice regarding a wide range of symptoms, general well-being and when to seek help.
Based on the initial consultation from the doctor a decision would then be made on whether the individual may have symptoms that need further investigating or require referral to an appropriate service. People in this situation could be referred to multidisciplinary services – including the recently created Post-COVID syndrome assessment clinics – for assessing physical and mental health symptoms and carrying out further tests and investigations.

These could be ‘one-stop’ clinics and are led by a doctor with relevant skills and expertise, taking into account the variety of possible presenting symptoms. The ‘one stop’ clinics have support from other healthcare professionals with relevant skills and experience in treating fatigue, breathlessness and other respiratory symptoms.

Additional referrals may be needed depending on the age and symptoms of the person. The rehabilitation team may include, but not be limited to, the following specialist areas (Shah et al.,2021) :

  • Specialist lung disease services, sleep clinics, and pulmonary rehabilitation (Yang and Yang 2020, Zhao et al., 2020)
  • Cardiac services
  • Pain management
  • Gastroenterology
  • Rehabilitation services
  • Dietetics and nutrition services
  • Primary care led care including care coordinators and social prescribers
  • Improving Access to Psychological therapies (IAPT) and other mental health services
  • Co-morbidity management e.g. for diabetes or obesity
  • Neurology
  • Rheumatology
  • Dermatology
  • ENT
  • Infectious disease services
  • Occupational health

Post-COVID syndrome assessment clinics in London:

  • University College London Hospital Trust
  • Homerton University Hospital Foundation Trust (Homerton University Hospital)
  • Barts Health NHS Trust (Royal London Hospital and St. Bartholomew’s Hospital)
  • Barking, Havering and Redbridge University Hospitals NHS Trust (King George Hospital)
  • London North West University Healthcare NHS Trust (Northwick Park Hospital)
  • Imperial College Healthcare NHS Trust (St. Mary’s Hospital)
  • Chelsea and Westminster Hospital NHS Trust (Chelsea and Westminster Hospital)
  • Kings Health Partners (Guys and St. Thomas NHS Foundation Trust – St. Thomas Hospital)
  • Kings Health Partners (Kings College Health Foundation Trust – King’s College Hospital)
  • St. Georges NHS Trust (St. George’s Hospital)

Is physical activity safe to do when suffering with Long COVID?

It is still unclear how long after the onset of COVID-19 infection it is safe to return to physical exercise.People who have been hospitalised, or had a low level of physical activity before the infection, might find it more difficult to return to their previous activity level.

As described above Long COVID symptoms might be due to many different reasons including: ongoing COVID-19 infection, damage to organs such as lungs and heart, post-intensive-care syndrome, post-viral fatigue syndrome, among other causes. This interaction and sometimes overlap will produce different symptoms, limitations, and needs in each person. Therefore the decision of when to return or initiate physical activity must follow an individual approach that should be gradual and based on subjective tolerance of the activity (Salmon et al., 2021, Torjesen 2020, Yang and Yang 2020).

Patients who have been hospitalised, or that present with cardiac symptoms such as strong chest pain, palpitations, severe breathlessness, or syncope (fainting), should be guided and checked by their GP, local COVID-19 assessment clinics or cardiology service before initiating physical activities (Salmon et al., 2021).

It is important that PVFS (Post-viral Fatigue Syndrome) is ruled out prior to initiating exercise. As mentioned above, this is an exceptional condition in which minor mental or physical activity can disproportionately make symptoms worse for days or weeks with extreme fatigue. Therefore, physical exercise is not recommended (Torjesen 2020).

Patients who have not been hospitalised, who do not present with the above cardiac symptoms and/or PVFS and extreme fatigue symptoms, who have been asymptomatic for at least 7 days, and do not struggle with simple activities of daily life, should, in principle, be able to gradually and prudently initiate physical exercise (Salmon et al., 2021). However, it is always worth checking with your GP beforehand.

Do I need to go to the GP or visit my local hospital?

For individuals who are concerned about new or ongoing symptoms 4 weeks or more after the onset of acute COVID-19 it might be worth getting in contact with your GP (Shah et al.,2021).
If you have received hospital treatment during your COVID-19 illness, you will probably be contacted by the hospital 6 to 8 weeks after you have been discharged to check how you are managing and if there are any new or persistent symptoms (Shah et al.,2021).
After your GP or hospital physician rules out complications and alternative diagnoses, and depending how you are coping and managing your symptoms, your GP/hospital physician might consider referring you to a local Post-COVID syndrome assessment clinic. Alternatively your GP might refer you directly to specialist services (e.g. cardiology) or rehabilitation services, or give you advice or clearance to initiate physical activity (Shah et al.,2021).


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