Long Covid: “I grieve for the energetic person I once was” confides brave Londonderry girl

Zoe McNulty, 27, from Londonderry takes a deep breath before listing off the symptoms of long Covid she has had to learn to live with since contracting the virus in March 2020, shortly after lockdown was declared. “Chronic fatigue, memory problems, brain fog, dizziness, heart pains, asthma, palpitations, intolerance to heat, high blood pressure, aches and pains, headaches, and nausea. It would be hard to count the symptoms of long Covid I still live with daily,” she said.

The initial phase of Zoe’s Covid infection,which she feels she may have caught while working in a pharmacy, left her feeling as though “she had been hit by a bus”, with breathlessness, fever, a sore throat and a cough leading to a diagnosis at Antnagelvin hospital. As a young, fit and healthy MA graduate in her 20s, who has lived and studied in Genoa, Italy and worked as a nanny there before becoming ill, Zoe was evidently a woman in her prime with an obvious lust for life, and thus assumed she would make short work of Covid.

But today, over 16 months on, even her cognition is still impacted: “I have the worst brain fog, including short-term and long-term memory problems. Sometimes friends will remind me about something that happened in the past, and I can’t remember, or if I am talking to someone I literally cannot follow all of what they are saying. It’s like my eyes glaze over and I just go blank. My concentration zones in and out. And now I have really bad anxiety about catching Covid again, because I had no underlying health symptoms. I’ve had the vaccine now but I worry about new strains like the Delta variant.”

Since being diagnosed with long Covid, which is the umbrella term for a panoply of symptoms lasting from 12 weeks after the initial coronavirus infection that can have hugely debilitating consequences, and affects over 20,000 people in Northern Ireland, Zoe has had to give up her job, studying and end her three-year relationship with her Italian boyfriend: “He didn’t understand how I could be so sick if I was not in hospital and I just couldn’t have anyone around me who did not understand what I was going through.”

Today she spends her time listening to music, watching Netflix, and “trying hard to conserve enough energy just to do everyday tasks like doing the dishes or having a shower. The chronic fatigue is awful. In the morning, it’s there; at night, it’s there. There are normal activities that I can’t even contemplate doing anymore. Is this going to be my life? It is so hard dealing with this mentally because you grieve for the person you once were.”

Although the public health messaging around Covid has of necessity concentrated on initial infection, reducing transmission, hospitalisation, deaths and the vaccination roll-out, research into the range of symptoms long Covid sufferers experience is unfortunately still at an embryonic stage.

And unlike in England, where long Covid clinics have been operational since late last year, the Northern Ireland Executive has yet to similarly move on service provision, leaving people like Zoe unsure where to turn.

“I know it has been a stressful time for the NHS and the Government but they need to collect the data on long Covid and begin providing services that can help.

“If I had five minutes with Health Minister Robin Swann I would ask him to meet with and listen to long Covid sufferers so that he understands the nightmare they are going through and the real necessity for services that can help sufferers regain strength on the path to recovery.”

The Office for National Statistics suggests that the litany of symptoms ranging from fatigue to gut and heart problems referred to as long Covid is currently affecting 1.1m people in the UK, shocking evidence of the urgent need for research into the condition and the various forms of specialist healthcare and social support those dealing with long Covid will require in order to lead functional lives again.

In April a cross party group of parliamentarians urged the prime minister to routinely publish the number of those suffering with long Covid, in order to quantify the“untold human suffering” that the condition involves so that it can be analysed and help shape government Covid policy.

The group of MPs said in their letter to Boris Johnson: “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.”

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, like Zoe, 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, 17.8% were no longer working and a further 19.3% had experienced a health-related change to their work

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.

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 the 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. We are still trying to look for treatments that can help mitigate symptoms.”

Writing in the Guardian, disability rights campaigner Francis Ryan called for a greater public health focus on the issue: “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.”

According to a recent BBC NI Spotlight investigation, the Department of Health here has promised that it will begin to open long Covid clinics in line with the mainland at an estimated cost of £2.5m before the end of the month, although these will be tailored solely for adults. But it was unable to disclose where such clinics would be located or indeed what kind of treatment they might be able to provide for an illness is still not fully understood.

One thing is clear: long Covid is a growing problem and one that the Northern Ireland Executive cannot afford to ignore.