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‘It’s a wild diease’: Long COVID the next pandemic challenge

COVID-19 is about nine months old, we think, and with each passing month we learn more about what this new coronavirus does to the body.

Long COVID is a term being used for one set of symptoms researchers are observing in many unfortunate people and it is exactly what the name suggests. 

In a British Medical Journal expert webinar on the topic, Nisreen Alwan – associate professor in public health, University of Southampton – defines long COVID as “not recovering [for] several weeks or months following the start of symptoms that were suggestive of COVID, whether you were tested or not”. 

For many people COVID-19 can be like a cold or the flu, but long COVID sufferers report such symptoms as conjunctivitis, sinusitis, prolonged headaches, chest pain, prolonged fatigue and even temporary blindness and loss of speech. 

New research has shown that some COVID patients have presented with severe neurological issues such as nerve damage. One study looked at the brains of people who died with the coronavirus and found that it can invade the brain cells, then choke off oxygen to the adjacent cells causing them to wither and die. 

According to the New York Times, 40 to 60 per cent of hospitalised COVID-19 patients experience neurological and psychiatric symptoms.

In the UK, approximately 358,000 people have tested positive for COVID-19 and the Guardian reports that around 60,000 of those people have reported symptoms lasting longer than three months. 

Paul Garner is one of those people, and he started to feel a bit off back in March. Paul is a professor involved in the work of infectious diseases at the Centre for Evidence Synthesis for Global Health, Liverpool School of Tropical Medicine, and it wasn’t until a work conference call with public health representatives from the WHO that he considered he may have contracted the coronavirus. 

“This guy said, ‘Don't quote me on this, but this is fucking scary,’” Paul tells me over Skype. 

“And he just said, ‘Anybody that has anything, just get yourself away from everybody,’ right, ‘just stop this transmission.’ And I did feel a bit strange. I said to everybody at work, ‘I'm going home, I don't feel straight.’” 

A fit, healthy, 64 years old, Paul spent most of his free time pre-COVID doing HIIT, yoga or running and wasn’t really showing any symptoms, but once he went home things escalated, fast. 

Within five days the symptoms closed in and became real in a scary way, and during another conference call he felt he was going to die.

“I was talking on a conference call with somebody and I said, ‘Oh fuck, I feel really awful.’ And I went to lie down and that was the stage where I felt so fatigued, like I'd been drugged, and I felt ... I had this tingling in my arms and my legs and blinding headache, my heart was throbbing and I was Googling myocarditis, because I wondered whether I'd gotten myocarditis, and I couldn't really see the letters right, and I thought, oh God, I can't do anything. And I just thought, well, maybe I'm actually dying,” he recalls. 

A cough, chest tightness, fevers and chronic fatigue followed and have dogged Paul ever since, arriving in waves and punctuated by frightening, often short-lived symptoms. 

“And then around week 11 [of my illness] I started living healthily. I kind of realised this relationship to exercise and because I'm into fitness so much, I was desperate to get back, I was desperate to get doing yoga again, and I was desperate to get running again, and it just didn't work. Every time I did something, it just floored me again,” he says. 

“From week 12 onwards, I've had almost a more chronic illness during the day. I started getting new symptoms, like I got tachycardia in the middle of the night on week 10, in week 14 I had this problem with my speech, and I couldn't find words properly... I was scared shitless, but I understand this is part of chronic fatigue now, I think that is quite well documented.” 

The mental toll of having a largely mysterious, open-ended illness is another spoke on the COVID wheel of misfortune that Paul has landed on.

“It is not normal for me to wake up in the morning on the verge of a nervous breakdown, full of tears and just, in my head just feeling so depressed, and then in the afternoon, after having a sleep, feeling as though I'm on top of the world. Even in a manic depressive illness, you don't turn round things that quickly, if you see what I mean.”

And the things which in a previous life had given Paul pleasure like food, drink or exercise now make him feel worse and his most persistent thought is – when will this end?

Paul is not alone and one positive to come from this, if we could describe it as such, has been the other long COVID sufferers who have formed support groups. Paul has written blogs about his ordeal in the British medical Journal and the Guardian, prompting many people to reach out to him in thanks.

“A lot of people said, ‘Thank you. This is just what I've been feeling. I feel so relieved to hear other people are going through this. I thought I was going mad,’” he says.

And it has been helpful from an academic view to collate all of the symptoms the group have had to contend with – including rashes, muscle twitching, mood swings, tingling in the arms and legs and sinus issues.

I notice when the fatigue starts to creep up on Paul. He mentioned at the start of our call that 20 minutes may be his max, at 30 minutes I remind him, but by 40 minutes we are still going. His words get caught and muddled on their way out and it seems as if stringing his thoughts together to make sense of his illness, to a stranger, is difficult. This could yet be identified as the real cost of this disease.

Worldwide, 27.8 million cases have been reported in a short time. If every one of those people suffered a long-term effect of the virus, the cost to health systems and economies worldwide could be just as nasty as the recessions incurred due to lockdowns.

More costly could be the social and mental affect this kind of long-term debilitating illness could have on our communities.  

I remarked, as we chatted at the start of our interview, that he looked remarkably well, considering – I’d expected worse. And he tells me, that this is a common reaction he now gets and it is frustrating. People like him now have to live with an invisible illness and although he is privileged to work from home and have understanding friends and colleagues, he worries about the thousands who don’t.

I also (on reflection, stupidly) ask Paul if he is glad that it is he has got it and that he doesn’t have to deal with the dread many of us feel about contracting the virus. And maybe this will work out well for some future academic endeavour.

“I wouldn't wish this on anyone," he replies. "Here I am at 15 weeks of illness, this is a huge chunk of my life thrown away. I wouldn't wish this on anyone. I mean, I think that for many people, it is quite a mild illness ... not everybody's going to die. I mean, when I first got it, I thought I was going to end up on a ventilator, that was the image.

“I think it's here forever. This has shaped my life. I'm not going to forget about this, if you see what I mean. There will be something I’ll do, but I just can't work out what at the moment. I need to reframe everything at the moment,” he says.

“It’s a wild disease.”

Paul and I spoke in late July, and he is still struggling with COVID-19 today, in early September.

In a blog in the BMJ on September 7 he wrote: “I thought this was going to be a short illness. I wrote my first opinion piece after six weeks of unrelenting illness, and am now writing at six months, with an illness that resembles ME/CSF. What will I write in six years? Will I be better, with memories of a dystopic world when I became infected as part of a government strategy to develop herd immunity? Or will I be reflecting wistfully on my lovely life that vanished one day in March 2020?”

 You can read Paul’s blog here.

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