‘Untold suffering’ of those with long Covid must be addressed

While we now have a substantial understanding of the primary symptoms of coronavirus, more and more research is showing that a lingering litany of seriously debilitating ailments ranging from fatigue to gut and heart problems are affecting 1.1 million people in the UK defined as suffering from the umbrella term ‘long Covid’, according to the Office for National Statistics.

While public health messaging has naturally focused on reducing the chances of initial infection, transmission and hospitalisation by means of the Pfizer and AstraZeneca vaccination rollout and lockdown restrictions, much less emphasis has been placed on understanding the physiological and psychological impact on a vastly significant demographic of long Covid patients and the different forms of specialist healthcare and social support they will need in order to lead functional lives.

This is because research into the panoply of long-term symptoms that Covid can occasion are still little understood, with medical and scientific research still at an embryonic stage.

Last week a cross party group of parliamentarians urged Boris Johnson to routinely publish the number of those suffering with long Covid, as happens with those infected or hospitalised with coronavirus, in order to ensure that the “untold human suffering” that the condition involves can be quantified, analysed and accordingly help shape future government pandemic policy.

The group of MPs and peers said in their letter to the prime minister: “Cases, hospitalisations and deaths are not the only measure of this pandemic. We urge the government to also count the number of people left with long Covid, many of them whose lives have been devastated by this pandemic.

“Comprehensive data on long Covid must be collected and factored into future decisions.”

Public sector workers such as health staff, teachers and transport workers are the most affected by long Covid, the ONS found. Symptoms such as pain, exhaustion, heart problems and “brain fog” often leave those affected unable to work or function normally.

The full range of long Covid symptoms is staggering and ranges from breathlessness, persistent coughs, joint and muscle pain, heart palpitations, headaches, numbness, anxiety, depression and post-traumatic stress disorder among those admitted to ICU.

The ONS data found that 700,000 of those affected by long Covid said that their symptoms were negatively affecting their ability to carry out day to day activities and 70,000 people have had symptoms related to the initial infection for at least a year.

Long-term effects are not only being experienced by those admitted to hospital; some may not even have been seriously unwell when they first caught the virus, but have gone on to develop longer term adverse symptoms.

A study led by the University of Leicester of just over 1,000 people who had been discharged from hospital found that one in five could be considered to have a new disability, so severe were their symptoms.

Of those who were working before they had Covid-19, 17.8 per cent were no longer working and a further 19.3 per cent had experienced a health-related change to their work.

This risk of long-term disability has been down played in the public discourse around Covid and given ONS statistics in particular, the issue deserves much more immediate attention.

Long Covid is not just an issue for individuals but for society as a whole, particularly because of its effect on the workforce. There are already reports that patient care in the NHS is being hit because many of the healthcare staff struggling with the condition are able to work only part-time, if at all; this is an issue that will probably hit teaching and other key professions in the near future.

Scientists and medics are still discovering how long the illness lasts and the multifarious ways it can vary in different individuals.

But the message of the ONS figures is dauntingly clear: hundreds of thousands of people across Britain are experiencing debilitating illness, all at once, with very little idea how to treat it, or when or if it will end.

It should be noted that longer-lasting symptoms of a varied nature are not unique to Covid - they can ensue from many other forms of viral illness - but the symptomatic picture presented by long Covid is complex and varied.

Doctor Connor Bamford is a virologist at Queen’s University Belfast who specialises in the study of respiratory illnesses.

He said: “We are still quite early in this investigation of long Covid and we are only starting to understand the symptoms and who is particularly affected. Tiredness, breathlessness, symptoms related to blood disorders, lots of different things are happening in the body. We don’t know exactly why we are seeing such prolonged symptoms in some people and middle-aged women, for reasons we also don’t yet fully understand, are more likely to experience such.

“We do know that conditions such as chronic fatigue syndrome have long been associated with the aftermath of a viral infection, and for some people these kinds of symptoms of brain fog, low energy and lethargy may be predominant. A hallmark of Covid is that its effects are not just restricted to the lungs; the immune system changes, gut problems can develop, and blood and heart disorders have been reported. There can be effects on the nervous system and for some the development of things like anxiety and depression. Long Covid in children has been linked to gut problems and tummy upsets rather than lung symptoms.

“The heart and blood vessels can be affected in long Covid and there is also evidence that the brain and the general immune system can be affected as well.

“Covid leading to long Covid can impact on many different parts of the body and we are still trying to understand why and then look for treatments that can help mitigate symptoms.

“We would naturally recommend vaccination as a way of combatting the potential for Covid and long Covid, although for those already infected we need to develop specific medications that will target different symptoms that are the legacy of initial viral infection.”

Researchers who analysed data from the Covid Symptom Study app to discover who is most at risk of developing long Covid, found that older people, women, and those who had five or more symptoms in the first week of becoming ill with Covid-19 were more likely to develop long Covid.

The condition affects around 10 per cent of 18-49 year olds who get Covid-19, increasing to 22 per cent of people over 70.

The demographic most likely to acquire long Covid were white women aged 40 to 60 with two or more medical conditions affecting the cardiovascular system, asthma or type two diabetes.

Writing in the Guardian on Wednesday, disability rights campaigner Francis Ryan called for a greater public health focus on long Covid as essential to shaping the government’s response to the pandemic and enabling those affected to access the support they need.

She said: “The tendency among scientists and politicians has been to focus on the short-term urgency of saving lives over the long-term impact on public health. But as we work to reduce deaths, we must also strive to protect people’s quality of life. It is likely that unless we act, a growing proportion of the UK’s population will suffer from a long-term health condition we don’t understand or know how to treat, and all without sufficient financial support. As the country enjoys the hope of a return to some normality, those with long Covid cannot be forgotten.”