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Misery of the COVID-19 long-haulers: ‘We’re all guinea pigs, we don’t know what’s around the corner’

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It has a plethora of symptoms, strikes the young and old, and lasts for months – maybe much longer. It’s also so new that scientists aren’t sure what they’re dealing with. For those whose lives have been deeply affected by long-term repercussions of Covid, the battle to be recognised is just the start.

There are thousands of people in the UK dealing with the long-term effects of COVID-19, experiencing debilitating symptoms that last for weeks and months beyond the initial infection.

One of the most commonly reported is fatigue, along with breathlessness, joint pain and muscle aches. Neurological issues are common, particularly brain ‘fog’ and a loss of memory and concentration. Some have chest pain or heart palpitations, skin rashes, diarrhoea, headaches, hearing or eyesight problems, or hair loss. Others have lost their senses of taste and smell. In online support groups, people are sharing stories of bone-crippling exhaustion, constant pain in their chest or heart, or the inability to remember a name or follow a conversation.

These people don’t fit the binary model of the virus we thought we knew – that if you’re in the small minority who are seriously affected you might be hospitalised, end up in ICU or worse; otherwise you’ll likely be better after two weeks. Many only had mild cases originally and were not deemed to be in vulnerable categories.

Widely varying symptoms have added to the confusion and fear surrounding the condition, which currently has no formal definition. For months, people with Long Covid had no one to turn to but each other. It’s only recently – through increasing research emerging, and sufferers publicly sharing their stories – that it has started to be taken more seriously. Earlier this month, NHS England announced a £10 million investment to set up one-stop services for physical and mental health issues caused by Covid alongside a Long Covid task force and, crucially, research on 10,000 patients.

Not much is known about what causes Long Covid and there is little firm consensus. There are theories it occurs when a patient’s immune system overreacts to the infection, which can lead to widespread inflammation that theoretically affects any organ. Last week, a study by the National Institute for Health Research (NIHR) suggested Long Covid symptoms could actually be caused by four separate syndromes: post-intensive-care syndrome, post-viral fatigue syndrome, permanent organ damage to the lungs and heart, or lingering COVID-19 symptoms.

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Source: The Telegraph, 24 October 2020

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