Living with long COVID: 'It's really scary having an illness no one can cure'

A woman who has lived with long COVID for the past 16 months has opened up about how the debilitating disease still impacts her everyday life.

Faye Wilson tested positive for COVID-19 in March 2020 and still hasn’t recovered.

She is one of potentially two million people in the UK thought to be suffering from persistent symptoms and, while there is still much research to be done into the illness, some studies have shown women are more likely to suffer from long COVID than men.

With most coronavirus restrictions across the UK now lifted and daily infection rates still hovering about the 20,000 mark, there are concerns about what this will mean for the number of Long COVID cases in the future.

Watch: What is long COVID?

Faye, who is 44 and lives in London, is was worried about the impact the disease could have on many people. She tested positive on 18 March last year.

“Ever since then, I’ve been healing,” she told Yahoo News UK. “The hardest part has been trying to keep a positive mental attitude when I’ve got two kids and I’ve got quite debilitating fatigue."

“My doctor is lovely," Faye added. "She was very kind and sympathetic, but fundamentally she doesn't know anything more about it than I do. She's got no treatments that she can really give me.

“Having an illness that no one can cure is really, really scary, really overwhelming.”

Faye was diagnosed with chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), as a result of COVID in November.

“I try not to think about what's happening to me,” she said.

“I've spent a lot of the last year not reading the news, trying not to get too emotional, because everything, even feeling emotions, takes energy.

“My doctor rang me a couple of days ago, to say that a long COVID clinic in my area has finally opened up and it feels, frankly, a little bit too late. I've had long COVID now for 16 months. It just makes me feel like no one really cares.”

NHS England has promised to invest £100m in long COVID services by the end of next year.

Watch: Long COVID patient opens up about his mental health

Meanwhile, doctors are seeking to identify who is most at risk of developing the illness.

One study from Imperial College London found that women are more likely to suffer from persistent COVID symptoms than men. The study is based on self-reported data of 508,707 adults in England.

Of this sample, 76,155 participants reported symptomatic COVID and were asked to report their symptoms after four weeks and again 12 weeks later.

At each stage of the study, women had a higher prevalence of symptoms than men, the most common complaint being fatigue.

At the beginning of the study, 43,654 of the 76,115 people with symptomatic COVID were women and 32,500 were men.

Four weeks later and 24,812 women still had symptoms, compared to 14,924 men.

Twelve weeks after the study began 18,109 women and 10,604 men were still symptomatic.

There’s no definitive explanation as to why women are more at risk of long COVID than men. However, it is believed to be linked to the fact women are more likely to suffer from chronic fatigue.

Niamh Murphy, virology cell task manager at Public Health England, said: “Long COVID is likely a constellation of different syndromes, including post-viral fatigue syndrome and post-intensive care syndrome, as opposed to a single condition and affected individuals may be suffering from one or more of these.

“Post-infectious syndromes, usually presenting with chronic fatigue and other non-specific symptoms, are well recognised and have been found to occur following infection from numerous pathogens such as Sars coronavirus, influenza and Ebola.”

Fatigue may be a side-effect of having a stronger immune system. Data shows that men are more likely to die from viral infections, including COVID-19, while women go on to develop post-infectious syndromes such as CFS/ME.

Women who suffer from chronic fatigue have long felt dismissed by doctors.

Faye, who has to work fewer hours now because of low energy levels, is upset by comments she’s seen online accusing long COVID sufferers of using the condition as an excuse not to work.

She said: “I've worked full-time ever since I left university, even when the kids were really little. I've never even contemplated being on benefits. If I could be 100% well again, I would choose that over getting sickness benefits.

“My mum moved in with me just before the pandemic. She moved here because she's 74 and she wanted me to look after her as she got older and I’ve needed her so much more than she's needed me.”

Some ME/CFS sufferers see similarities between the way long COVID sufferers are being treated and how people with ME have been treated for years.

Evan Francis writes for ME Association’s magazine and was diagnosed with ME in 2017.

She said: “It’s like people with long COVID are being given a pass into the ME club and it’s not a club you want to be in if I’m honest.

“Of all the symptoms of ME, fatigue is the most misunderstood. I have to explain to people that fatigue isn’t the same as normal tiredness. It’s like going for a run with bricks on your back while being hungover and jetlagged all at the same time. When you get home, you just want to collapse in your bed and you never wake up feeling refreshed.

“Fatigue also affects me cognitively. I start slurring occasionally and not being able to keep things in my brain. Lots of things keep going out of my head and that is quite a common thing with fatigue.

“It makes such a difference when you have a doctor who understands what you’re experiencing. When I first got diagnosed, I was told to try exercise.

"But, now my GP knows that when you’re suffering from a fatigue condition exercise usually prolongs the problem.

“I really hope that we start understanding post viral fatigue better. I can’t help but think if we spent more time listening and understanding ME patients, we would have been in a much better position now dealing with long COVID patients.”

You can find out more about ME/CFS here: https://meassociation.org.uk/about-what-is-mecfs/

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