Growing number of ‘long haul’ COVID-19 patients

by | Gastrointestinal Health, Tests and Investigations

“Long haul COVID”, “long tail COVID” or just “long COVID” are terms arising from a growing group of patients who report persistent symptoms of COVID-19 often 100+ days beyond diagnosis. Characteristically, the symptoms don’t appear to be constant, but to wax and wane, and, noticeably, vary in nature from day to day. At least 10 per cent of people with COVID-19 are estimated to experience long haul symptoms. In some studies it’s much higher and in younger people.

Symptoms of long COVID

Symptoms are wide ranging, but profound fatigue is a common persistent symptom of long COVID, along with breathlessness and inability to exercise. Many of the symptoms are neurological and some are similar to symptoms experienced by people with chronic fatigue syndrome.

Common symptoms reported in long-haulers include brain fog, inability to concentrate, headaches, intolerance to exercise and heat intolerance. Other symptoms include low-grade fever (relapsing and remitting), cough, chest pain, breathlessness, persistent loss of sense of smell, and gastrointestinal symptoms. These symptoms can be accompanied by mental health problems such as anxiety and depression.

Symptoms can be severe and come and go. Patients report experiencing different symptoms from one day to the next. Some days they feel better; the next day they could be floored by symptoms. They report frustrations with family, friends and employers who think they should be recovered by now and have lost patience with them. They are desperate to return to their normal lives. There are patients who were infected early in the pandemic who still suffer symptoms 5 months on.

There are concerns about the long-term consequences of COVID-19, especially on the heart and lungs. A study of 100 German patients recently recovered from COVID-19 found 78% had cardiac involvement and 60% ongoing myocardial inflammation.

Many patients have persistent respiratory symptoms months after the initial illness. This is consistent with the experience of SARS and MERS, where 30% of people had persisting lung abnormalities. Among those hospitalised with COVID-19, a proportion end up with lung scarring. Even some people who were hardly affected by the acute phase of the disease have some scar tissue on scans.

Risk factors for long COVID

It’s not clear who is at greater risk of being affected by long COVID-19. The experience can seemingly happen to anyone who contracts COVID-19. Many of those documenting the condition are doctors and nurses who were in good health before getting the virus. Even people who may have been described as ‘mild’ cases can have ongoing serious issues, leading to calls to reclassify ‘mild’ COVID-19 as ‘non-hospitalised’.

Professor Tim Spector of King’s College London, who is running the UK COVID Symptom Study, has identified six clusters of symptoms for COVID-19. A couple of these clusters are associated with long term symptoms.

“If a person has persistent cough, hoarse voice, headache, diarrhoea, is skipping meals, and has shortness of breath in the first week, they are 2-3 times more likely to get longer term symptoms,” according to Professor Spector.

Long COVID also seems twice as common in women, data from the study shows.

There is an equivalent study being carried out at St Vincent’s Hospital in Sydney (see below).

Management of long haul COVID

It’s early days and there are no specific Australian guidelines for managing long haul COVID at the time of writing.

In Victoria, a new clinical pathway is launching which will link GPs, hospitals and COVID patients, to provide guidance for clinicians treating COVID survivors (Healthpathways).

St Vincent’s Hospital in Sydney is running the Adapt study – a 12-month observational cohort study following people post COVID-19 infection. Participants are being tested every 3 months to assess long-lasting effects of the virus.

A similar study in the UK, the Post-Hospitalisation COVID-19 Study (PHOSP-COVID) will follow 10,000 patients for year, collecting and analysing data on biomarkers.

The BMJ has published a guide Management of post-acute covid-19 in primary care with a useful infographic on assessment and management of patients with continuing symptoms.

Clinical trials are recruiting patients and gathering data, which should allow development of guidelines and protocols for treatment and follow up of long COVID patients.

Support for long haul COVID

Long haul COVID gained attention from online peer support groups set up by patients frustrated and exhausted from trying to get their symptoms and experiences taken seriously. The Long COVID Support Group is one of the largest groups with 22,000 members to date. Connecting with others similarly affected can help patients to understand their experience and gain validation and advice.

References and further reading can be found below.

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