What is "long COVID" and why do some people's COVID-19 symptoms last months?

Long COVID isn't well understood

"Our understanding of how to diagnose and manage COVID-19 in general continues to evolve," explains Dr Noluthando Nematswerani, Discovery Health's Head of the Centre for Clinical Excellence. The more we learn, the clearer it becomes that the disease can affect us both in the short-term and long-term, and it can also affect multiple organ systems in the body.

"Long COVID is not yet fully understood and for the considerable number of people across the world who are reporting long COVID symptoms, the situation is extremely serious. It is very unfortunate that, across the world, some people who suffer 'post-COVID conditions' have reported struggling to get their symptoms taken seriously, feeling stigmatised or even being unable to access care."

• Why can recovery from COVID-19 be different from person to person? Find out more.

Why is it important that we understand long COVID?

Around one in every 10 people who contract COVID-19 continue to feel sick for longer than three weeks following an acute phase of illness.

Having long COVID, post-COVID conditions, Post Acute Sequelae (PASC) of COVID-19 or being a COVID long-hauler is something that a World Health Organization (WHO) brief states "can be severely disabling, and those suffering from it report functional disabilities. Although there is no simple symptom or test for diagnosing it, many people experience severe fatigue and a range of troubling physical symptoms that make it difficult for those who are employed to return to work. This has obvious economic consequences."

In February, the WHO urged global authorities to make understanding long COVID a priority, including the medium and long-term rehabilitation of people who have symptoms of long COVID.

Are people who have persistent COVID-19 symptoms infectious to others?

"People who contract COVID-19 seem to be most infectious to others within the first five days but not afterwards," says Dr Nematswerani. "Unless someone has been reinfected with COVID-19 in the months after their first infection - and if they suspect this, they should be tested - it's very unlikely that the presence of ongoing long COVID symptoms means that they are infectious to others."

According to a Q and A on "COVID Long Haulers" by the Cleveland Clinic, "The vast majority of long haulers test negative for COVID-19, despite lingering symptoms." They define a long hauler as still having some sort of symptom 28 days or later after they were first infected.

Which symptoms are associated with long COVID?

The condition can be very exhausting and makes patients feel weak, and it's associated with a range of often overlapping symptoms which occur at the same time.

• The British National Health Service's "Post-COVID patient information pack" includes many practical tips around recovering from COVID-19 and also dealing with persistent COVID-19 symptoms.

According to the WHO and the United States Centers for Disease Control and Prevention (US CDC), the most common long COVID symptoms include:

• Fatigue
• Shortness of breath
• Cough
• Joint pain
• Chest pain

Other less common but more serious symptoms include:

• Severe fatigue
• Brain fog (difficulty thinking and concentrating)
• Headaches
• Muscle pain
• Intermittent fever
• Depression
• Heart palpitations

According to a WHO brief, "There is growing evidence that the virus can cause direct organ damage but also give rise to an abnormal response, increasing blood clotting and release of inflammatory substances. This can affect many different body systems, in particular the heart, lungs and brain." More serious long-term complications associated with long COVID include:

• Neurological disorders, including smell and taste problems, sleep issues, difficulty with concentration, memory problems
• Cardiovascular disorders - inflammation of the heart muscle and increased risk of damage to the heart, lungs and brain
• Respiratory - lung function abnormalities
• Renal - acute kidney injury
• Dermatologic - rash and hair loss
• Psychiatric - depression, anxiety and changes in mood

A 2021 publication in the South African Medical Journal adds that there is growing evidence that being infected with COVID-19 can result in persisting cognitive impairment. Authors report that COVID-19 can have consequences for prolonged cognitive dysfunction even in people who had relatively mild symptoms that were managed at home. For the most severely affected participants with COVID-19 (those hospitalised and who required mechanical ventilation), there can be significant loss of function with linguistic problem-solving and visual selective attention most affected. Exactly how long this may last is still to be determined.

A Guardian article quotes Danny Altmann, a professor of immunology at Imperial College London, as saying that many of the features of long COVID, when put together with some of the organ damage seen by MRI or CT scans, look like inflammatory or autoimmune manifestations. The Office for National Statistics (ONS) in the UK estimates that over a million people in the UK were reporting symptoms associated with long COVID at the beginning of March 2021, with over two-thirds of these individuals having had (or suspecting they had) COVID-19 at least 12 weeks earlier. An estimated 674,000 people reported that their symptoms have negatively impacted their ability to undertake their day-to-day activities.

What is it like to have long COVID? Patients report back

"It's clear that persistent COVID-19 symptoms will seriously affect a person's ability to carry out their duties, to work and enjoy a good quality of life," adds Dr Nematswerani. "Long COVID affects every aspect of life, it affects one's mental health and one's ability to focus and work, and could have economic consequences too. This is why it's so important that we acknowledge the prevalence and growing awareness around long COVID."

Research published in BMC in December 2020 includes details from interviews with people who have experienced long COVID. Researchers write that the people they interviewed "described being trapped in a cycle of small improvements followed by setbacks which were physically and emotionally stressful, with no clear prospect of full recovery."

In some cases, study participants felt that healthcare professionals who treated them didn't believe that their symptoms had lasted as long as the patients reported, and, "dismissed their symptoms as 'just anxiety'."

• One participant, an office worker, explained the effects of the brain fog they felt:
  • "I'm not working, I haven't... I wasn't able to go back to work and then I got made redundant. I'm... I can't even imagine how I'm going to find a new job yet. In the last week, I'm wondering because my brain fog seems to have lifted and it's feeling possible finally, after nearly six months, that I might one day find a new job. But my life is just nothing like it was and it's not really the life I want, you know. I need to improve."
• • Others spoke about the long-term fatigue they experienced and the dramatic impact on their ability to carry out basic daily activities:
  • "My energy levels are returning - that took me weeks and weeks. I mean, this morning I went for a two hour walk and actually when I got back, I slept for two and a half hours."
  • "And the fatigue is literally like hitting a wall. I can't stay awake anymore. It's just like, wow, I have to go to bed."

Who is likely to suffer long COVID symptoms?

"It is unclear why some people who contract COVID-19 continue to show symptoms for months," says Dr Nematswerani. "What determines whether long COVID will develop is also unclear at present."

• Research published in December 2020 suggests that opinion is divided on whether long COVID is more likely in people with conditions such as asthma, diabetes and autoimmune disorders or in people without these conditions. Long COVID is known to occur in both people who have no pre existing health conditions and in those who were admitted to hospital. Current studies are also looking at the extent to which long COVID is experienced by people who recover from mild COVID-19.
• According to the WHO, long COVID can affect anyone, but women and healthcare workers seem to be at greater risk.
• An opinion piece in the British Medical Journal adds that while we do not yet know why some people develop long COVID, it seems more prevalent in healthcare professionals due to their increased exposure to COVID-19.
• The Cleveland Clinic reports that long COVID can effect anyone - young, old, those who were healthy, those who had a chronic condition, those who were hospitalised and those who weren't.

How should long COVID be managed?

"The initial management of long COVID should be by a person's primary care provider, such as by their GP," adds Dr Nematswerani. "They will be able to assess the patient fully and refer them where needed so that their care can be tailored to their clinical situation."

"It's very important that those who experience ongoing COVID-19 symptoms continue to be managed by their attending doctor and continue to be vigilant for months and years after recovering from COVID-19. This is because there are potential long-term consequences that we have not yet determined. They should also always check in with their doctor at any point if there are symptoms in the immediate short or longer term that are worrying us as they could be indicative of a deeper medical problem."

Is it safe for people who experience long COVID to receive a COVID-19 vaccine before their symptoms resolve?

According to the United States Centers for Disease Control, if you test positive for COVID-19 (or believe you have it), you must wait 10 days (or until you are no longer showing symptoms of COVID-19) to receive the vaccine. However, if people have the persistent symptoms typical of long COVID, they should be vaccinated against COVID-19.

"All medical information found on this website including content, graphics and images, is for educational and informational objectives only. Discovery Health publishes this content to help to protect and empower all South Africans by promoting a better understanding of COVID-19."