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Long Covid: ‘I feel alone and lost . . . it is difficult to see an end to this’

Dr Muiris Houston: We urgently need more research into understanding its underlying pathology and to find better treatments

“I am as unwell as I was in September, 2022. I cannot exercise. I cannot walk very far without getting very breathless. I cannot stay up later than 9pm and I wake up as tired as when I went asleep. I keep my brain active with writing, reading, podcasts, etc, but socially I have no outlet. Exercise wise I have no outlet. I feel alone and lost. I get that I am luckier than a lot of people . . . but it is difficult to see an end to this.”

This is the narrative of a 63-year-old woman with an 18-month history of long Covid. She is just one of many readers who responded to my recent column about how long Covid must be treated as the serious threat it is to public health. Your stories are varied, but with some common threads. I am grateful to you for allowing me share your (anonymised) experiences.

Some have had more than one bout of long Covid, which is defined as the continuation of symptoms some 12 weeks after being diagnosed with SARS-CoV-2 infection.

Healthcare workers were, by far, the most prevalent occupational group who responded. There was also a significant number of teachers among those who replied. Age-wise, respondents ranged from their 30s to their 70s.


Everyone who got in touch had multiple symptoms, as these excerpts illustrate:

“I have a myriad of symptoms including fatigue, brain fog, pains in my back, unexplained tingling throughout my body, tinnitus, blurred vision, sensitivity to light, headaches and insomnia.”

“After my initial illness, I wasn’t getting better. I was fatigued and I had PEM (post exertional malaise). Then the palpitations started, the high heart-rate and the shortness of breath. Small tasks would raise my heart-rate, like getting dressed or going for a short, slow walk. My brain fog was its worst in 2020, I had difficulty with word finding, saying the wrong word, poor concentration, unable to multitask, poor memory.”

A 39-year-old health professional says: “After a week I became breathless, so breathless that I spent days just lying on my stomach. I was particularly breathless when I was talking – something that has continued. I had fatigue, sore throat, chest pain and breathlessness.”

“I’m a male 77 years of age. I have had long Covid for over five months. Before this, I could run up the stairs in under four seconds. I now suffer from: Fatigue; shortness of breath; a very itchy rash on my back; and memory loss and confusion.”

Many of you have been seen in one of the six long Covid clinics in the public system. While most have been treated empathetically, there is a sense of frustration that appointments are a minimum of six months apart, with little long-term follow-up from physiotherapy or occupational therapy.

Those with cardiac symptoms have sought out the help of a cardiologist, often a specialist working in private healthcare. The main cardiac symptoms you reported were: An elevated heart rate, an irregular heart beat and palpitations.

Some of you were diagnosed with PoTS – Postural tachycardia syndrome – when your heart-rate increases very quickly after getting up from sitting or lying down. There is some evidence for treating PoTS with the cardiac drug Procoloran (ivbradarine), while others have benefited from the prescription of a beta blocker.

Central nervous system symptoms were almost ubiquitous. ‘Brain fog’, caused by cognitive dysfunction, led to poor memory, difficulty concentrating, inability to read and difficulty carrying out certain complex tasks.

Persistent fatigue and profound post-exertional tiredness are a significant challenge in long Covid. Some of you are being treated with low dose naltrexone (LDN). In regular doses of 50 to 100 milligrams, naltrexone is used to treat people with substance use disorder, as it blocks the opioid receptors in the brain.

In small quantities, usually 1/10 to 1/20 of a regular dose, naltrexone takes on several paradoxical qualities, relieving chronic pain and dampening down inflammation. In long Covid, it is thought to work by acting as an anti-inflammatory in the brain.

Although persistent respiratory symptoms are less of a problem than other issues, there is a noticeable prevalence of bronchial hyper-reactivity for some of you suffering with long Covid.

In other words, people with no history of lung disease, become super sensitive to fumes, perfumes and other respiratory irritants. This triggers bouts of coughing and wheezing, as this description of a partner’s situation illustrates: “The breathing issue has been obvious from early on and is still there today. A consultant has diagnosed a form of asthma which (my wife) never suffered with before. It’s really obvious when we try to have a walk as she can’t walk at any pace and has to stop occasionally.”

There are stories of improvement also: “Thankfully, in the last few months I’ve improved the most in the last four years. As my health has improved, I’ve finally been able to expand what I do and I’ve slowly worked up to being able to manage 5-7 minute walks a few times a week. I can have longer conversations – my ability to understand more complex language has improved . . . (but) I still often lose my train of thought in the middle of a sentence. I struggle to bring ideas together and think more abstractly. My cognitive and physical stamina is still extremely poor, but it feels like I’ve carved out a small bit of quality of life.”

Some 10 to 20 per cent of people who continue to be infected by Covid will go on to develop long Covid symptoms. For an illness with such a high prevalence we urgently need more research into understanding its underlying pathology and to find better treatments.

Most of all, we need to redouble our efforts to make those coping with a significant long Covid disability no longer feel like a ‘lost generation’ – forgotten about and alone.