By Paul O’Malley
As the country attempts to return to the way it was before March 2020, there is one particular cohort of people for whom the legacy of the Covid-19 virus remains ongoing.
Research recently conducted by the Oireachtas Library and Research Service estimates that 114,000 people in Ireland have had Long Covid or will experience it at some point in the future.
What exactly is Long Covid? The World Health Organisation first clinically defined Long Covid in October 2021 as: “A post-Covid-19 condition occurring in individuals with a history of probable or confirmed SARS CoV-2 infection, usually three months from the onset of Covid-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis.”
Common symptoms of Long Covid include fatigue, shortness of breath and cognitive dysfunction. It has been generally found to have a severe impact on everyday functioning. Symptoms may also fluctuate or relapse over time. These effects appear to occur irrespective of the initial severity of infection but have been found to occur more frequently in women, the middle-aged and those with more symptoms initially. It is not contagious as, based on what we know, people are very infectious for the first seven to 10 days after developing Covid-19 symptoms, but are not infectious after this point.
Despite the WHO’s classification of Long Covid, there is still so much about the condition that remains unknown to medical science, and research is constantly evolving. A recent pilot study found abnormalities in the lungs of Long Covid patients who have breathlessness which cannot be detected with routine tests.
The issue of Long Covid came before the Dáil recently, raised by Independent TD for Roscommon-Galway Denis Naughten. In September 2021, Deputy Naughten quered the Minister for Health Stephen Donnelly as to why Long Covid had not been recognised as a condition.
Just weeks ago, Deputy Naughten raised this issue again and was told by Minister for State at the Department of Health Mary Butler that a working group had been set up to facilitate special Long Covid clinics throughout the State, as well as specialists in this condition. The group would conclude its work over the next four weeks, she said.
The call for action on Long Covid has been ongoing for much of the pandemic as it is a condition that has threatened the lives and livelihoods of those who have contracted it. John (not his real name), a primary school teacher from Mayo in his early 30s, recently contacted the Western People to share his experience of Long Covid. He has no underlying conditions and Long Covid has prevented him from working for almost two years. He has described the past two years as “a living nightmare”.
“I contracted Covid back in early March 2020 during the first wave of infections. My acute infection was mild. I was experiencing quite a few of the common symptoms. These symptoms were mild in my case. I wasn’t overly concerned at the time, being young and in good health, I assumed I would get over it in a couple of weeks. “This, unfortunately, wasn’t the case. As the weeks went on I was still experiencing symptoms that would come and go almost in cycles and I thought maybe it’s just taking me that bit longer than the ‘typical’ two-week recovery period. For about three months following infection I was still managing, just about at times, with daily activities, exercising and working from home, but the vast array of symptoms and tiredness were becoming increasingly problematic.”
It quickly became clear that this was not a case of a slow recovery from Covid-19 or lingering issues. There was something seriously wrong.</p><p>“It was around late June or early July 2020 when things got drastically worse. I was out hillwalking with a friend. I didn’t realise at the time that it would be the last time I would be able to do something like that. I was really struggling with energy levels. I had no choice but to push through it,” he said.
John soon came to realise, through reading the social media accounts of others going through the same thing following a Covid infection, that he was suffering from Long Covid. “By the time we got back to the car I was absolutely exhausted. I remember sitting in the car thinking what am I going to do, I don’t have the energy to drive home. It was bizarre. I had never experienced fatigue like it. Chronic fatigue had set in. This resulted in a severe crash, what I now know to be post-exertional malaise (PEM) and post-exertional symptom exacerbation (PESE).
“This was like nothing I have ever experienced before. Absolute exhaustion both physically and mentally to a point where you can’t move or even think at times. You would wake up not knowing what’s in store on any given day with what seemed like a never-ending cycle of symptoms. It’s almost overwhelming to give an account of the range of symptoms, there are just so many.”
Some of the symptoms that John experienced ranged from nausea to heart palpitations to severe back pain to tinnitus to headaches and migraines to memory issues to a number of symptoms related to fatigue and breathlessness. This, however, is putting it very lightly. His daily routine has been altered heavily by Long Covid and every single day has the potential to bring a new challenge and a new symptom to learn how to manage.
“My level of functioning hasn’t been linear throughout this. It fluctuates. Last year I thought I was on an upward trajectory. My exercise tolerance had begun to improve to the point that I could walk long distances again, on level ground and at a slow pace, without worrying about PEM or PESE. “Unfortunately, my condition deteriorated again last October and I have been mostly housebound again for the last few months. A short 15 to 20-minute walk now will bring on a crash, which gives me severe symptoms that leave me bed-bound for a day or two. So I have to try and manage my symptoms by not doing too much and pacing activity.
This applies to everything you do, both physical and cognitive.“At times you can’t watch tv, read or even have a conversation. Everything requires energy and you just don’t have it. I can generally only manage one or two tasks a day now. If, for example, you have something like a doctor’s appointment coming up you need to rest up for a day or two beforehand so you can function.”
John has spoken to various GPs and consultants from a variety of disciplines because the lack of multidisciplinary clinics meant each symptom, of which there are many, would need to be investigated separately. He attended a post-Covid clinic but this resulted in him being referred back to his GP. “The consultant there didn’t seem to have any knowledge or experience of Long Covid and they really didn’t understand the disease. The clinic seemed to be geared towards patients who were previously hospitalised with a bad acute Covid infection who may have had resulting organ damage.”
John is currently attending a Dublin-based clinic specialising in infectious diseases once every three or four months. However, these appointments are mostly observational and there is an overall lack of answers and treatment for the condition.“Unfortunately there are no services for Long Covid in the West which is problematic because travelling is so difficult with this disease. I’m no longer able to drive long distances.“Generally speaking, people seem to have very little understanding of the disease and that’s if they’ve even heard of it. Many mistakenly think Long Covid is a slow recovery from Covid, I think. That’s not the case, it’s a separate disease in its own right. It doesn’t help matters that the term Long Covid is used to cover such a large and diverse group of patients in terms of clinical presentation, severity, fluctuation and causal factors.”
John says the HSE is “burying their heads in the sand” in relation to Long Covid. “They have yet to respond to the crisis of Long Covid almost two years on despite pleas from both patients and clinicians. It’s shameful really. Ireland is really lagging behind in this regard. For example, in the UK, the NHS has set up a network of more than 80 Long Covid clinics. Many people are struggling to access appropriate care here in Ireland.
“Long Covid doesn’t discriminate by age. It is heartbreaking to think of young children having to suffer this knowing just how horrific it is. The way the Government handled the lifting of restrictions was reckless. They are consciously condemning thousands more to a life with chronic illness by allowing the virus to rip through the population.
“These past two years have been a living nightmare. Your life as you knew it comes to a halt. Two years on, not being able to work, travel or go out and do things like you used to. Not knowing when or even if you are going to recover is tough. Really tough.”