A CHRONIC ISSUE
Early research indicates that women are more likely than men to suffer the effects of the Covid-19 virus weeks, often months, after infection. As the number of female ‘long hauler’ patients grows, WH asks what this means for the way they’re treated
Long Covid is a condition that disproportionately affects women – we meet them
On 13 April 2020, Sophie Wilson thought she was going to die. Just days after a crippling headache set in and she lost her sense of taste and smell, the 39-year-old woke suddenly at 3am to find herself sweating, faint and struggling to breathe. Catching her grey reflection in the mirror, she dialled 999. ‘I left my front door open and staggered back to bed, unable to stand up,’ she recalls. Finding her just outside the low-oxygen danger zone, paramedics left her at home – ‘suspected Covid-19’ written on her notes. She survived, but it was just the beginning of months of hell. Days later, after she was rushed to hospital with all the apparent symptoms of a heart attack, a doctor told her it was just stress, and that she needed to get on with her life. Heeding his advice, she spent the following day at her laptop running her communications business, breaking to do some gentle yoga – only to be left bedridden for a week with paralysing fatigue. In the months that followed, Sophie’s daily routine became unrecognisable; gone were the morning runs down to the Brighton seafront for a swim. Instead, she relied on friends to drop round groceries or push her in the wheelchair that, on bad days, she needed to get around. When she recounted to her GP over 20 debilitating and unfamiliar symptoms – including stabbing chest pains and brain fog – he diagnosed post-viral fatigue, admitting he had no idea if she would recover. Other doctors suggested anxiety. Frustrated and afraid, she went online – and it was there, among the stories of other women, that she found a home for what she was experiencing in the two words that have come to define her life ever since.
Long Covid has a list of symptoms that’s as perplexing as it is lengthy, from extreme fatigue, breathing difficulties and heart palpitations to neurological issues like loss of concentration and memory. They vary in intensity and severity, the only constant being that they persist for weeks or months after infection with Covid-19. Exactly how many people are living in this nightmarish limbo is unknown (more on that later), but early research suggests that women are disproportionately suffering. A paper published in September found that, despite making up just over half of study participants who’d been hospitalised with Covid-19, women accounted for two-thirds of those with persistent fatigue. Shortly after, King’s College London researchers found that one in 10 people remain ill for over a month after symptoms emerge, and one in 20 after eight weeks – with twice as many women suffering than men. So why does long Covid have a predominantly female face? And what does this mean for the women whose lives have been levelled by this virus?
HIDDEN PANDEMICThey’re hard questions to answer, especially as scientists don’t yet know what they’re dealing with. The term ‘long Covid’ was coined by an Italian sufferer, Dr Elisa Perego. And shortly after she used it on Twitter last May to describe her symptoms, #Longcovid went viral. That the condition emerged from anecdotal reports led to initial scepticism in the medical community, with some arguing that the symptoms were unsurprising in the context of a nasty respiratory virus. But, before long, leading medics – such as US infectious diseases expert Dr Anthony Fauci – accepted that the symptoms extend well beyond what’s expected of any regular post-viral syndrome. In July, the government announced funding for a year-long Uk-wide study into why some Covid sufferers are still not better, led by the University of Leicester – but, given the variability in
‘Most days, even cooking and reading are out of the question’
sufferers’ symptoms, there’s no clear line of investigation. Researchers are looking at the role of everything from the brain to the respiratory system. Compounding confusion, in October, a National Institute for Health Research report suggested long Covid may be four different conditions.
As to why women are being disproportionately affected? That picture’s even blurrier. ‘It may be caused by differences in men’s and women’s immune systems,’ says Professor Tim Spector, who co-led the KCL study. He believes the virus seems to behave like an autoimmune disease – where the body’s immune system mistakenly attacks and destroys healthy body tissue. His study also identified that most female sufferers are between the ages of 50 and 60, the age group in which oestrogen levels – vital for the immune system – plummet as women enter the menopause. That many are also experiencing their worst symptoms right before their period, when oestrogen levels are lowest, has led the KCL team to start investigating the role of female hormones.
TESTING TIMES
But while theories about long Covid circulate within the upper echelons of scientific research, in GP surgeries, confusion is rife. While a third of doctors told the British Medical Association (BMA) that they’d encountered long Covid in practice, when
WH submitted a freedom of information request to 84 GP surgeries in Manchester
(at one point, one of the worst affected areas) late last year to establish the prevalence of long Covid cases, only four could give us a definitive answer – though even within that tiny data set, the majority of sufferers were female. Since long Covid wasn’t a recognised illness, with no definition or diagnostic criteria, we were told it didn’t have a SNOMED CT code – used by the
NHS to monitor the usage of medical terms in medical documentation – which would allow numbers to be tracked. And with medical research unable to pinpoint what long Covid is, doctors are struggling to help these patients. ‘We’re learning on the job about a condition, while also dealing with the stress of an increased workload, little extra support and lots of uncertainties,’ says Dr Punam Krishan, a GP in Glasgow. ‘I see how frustrated patients are when test results fail to provide a conclusive diagnosis – and it’s understandable.’
For women like Amy Durant, a 31-year-old book editor from Surrey, frustration is the least of it. She caught Covid last March and, after a fortnight of feeling unwell, she thought she was recovering when the breathlessness, brain fog and unrelenting tiredness returned with a vengeance. ‘Most days, I’m unable to leave the house where I live with my partner – sometimes not even my room; even cooking and reading are out of the question,’ she says. Besides losing her former life – satisfying working days editing fiction punctuated by long runs – her experience has been worsened by the sense that she’s living in limbo. She recalls ending phone calls with her GP in tears after being refused referrals to cardiology and neurology, despite her doctor being unable to diagnose the reasons for her crippling fatigue, chest pain, dizziness and cognitive impairment. After eight months of follow-up calls, she was told they couldn’t do any more to help her. She’s now considering buying a wheelchair.
MIND THE GAP
Most shocking to Amy was how quickly doctors blamed her physical symptoms on her mental health; one GP even prescribed an antidepressant – and countless sufferers interviewed for this piece reported similar stories. Professor Felicity Callard, a human geographer at the University of Glasgow, is one of them. She believes her history of anxiety and depression led a GP to assume her brain fog and debilitating fatigue were symptoms of a psychological issue. ‘If you’ve received mental health treatment previously, when you show up with other symptoms, it’s often more likely that those symptoms will be viewed through a psychiatric lens,’ she says. Research has linked long Covid with mental health issues – the University of Oxford found that one in every 17 people who have suffered from Covid-19 could be diagnosed with anxiety, depression or insomnia for the first time. But it’s more likely that the former is causing the latter – and not the reverse. ‘If you have this disease for months, it’s understandable that you’ll feel depressed,’ says Professor Spector. ‘These physical symptoms are not imaginary.’
And yet, influential voices continue to suggest that thousands have gone from fit to bed-bound because of pandemicinduced anxiety, with one senior figure at a leading university describing the anecdotal reports as ‘hysteria’. To Maya Dusenbery – who’s researched the gender health gap for her book Doing Harm – this is evidence of history repeating itself. ‘For centuries, women have been told their symptoms are “all in their heads”, and the stereotype that women aren’t very good judges of what’s going on in their bodies has been baked into medical knowledge,’ she argues. Dusenbery explains that ‘hysteria’ was an ancient medical diagnosis that, by the early
20th century, was applied liberally to anything women did that baffled (mostly male) doctors
– like wanting sex and voting rights. That women’s symptoms are today routinely dismissed as ‘medically unexplained’ is proof, she argues, that this legacy remains.
Multiple studies suggest this mentality is real – and that it has consequences, from the overdiagnosis of depression in women in the 1990s to the present-day statistic that women wait an average of 16 minutes longer in hospital to receive pain medication than men. Compounding this disconnect between doctor and female patient further is the fact that, as with other illnesses, such as fibromyalgia or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), many of the symptoms of long Covid are invisible; the most common being fatigue.
That we’ve been here before with other hidden health conditions is precisely why we need to take a considered approach to long Covid, argues Dr Ben Marsh, a consultant paediatrician who, due to ME/CFS, has been unable to work for three years. ‘If well-funded research had begun into ME/CFS half a century ago, we’d be in a very different situation
now with long Covid,’ he tells WH. After the first known outbreak at the Royal Free Hospital in 1955, when an unknown viral infection caused prolonged symptoms in 300 (mostly female) doctors and nurses, ME/CFS was branded ‘hysteria’ and written off as psychological (sensing a theme?). The parallels don’t end there; specialists have argued that Covid-19 could trigger a second pandemic of ME/CFS – not much of a reach given that 40% of those recovering from SARS after the 2003 outbreak were suffering with chronic fatigue three years later*. Without that research, Dr Marsh explains, there’s no robust evidence on fatigue that could provide doctors with an effective framework for long Covid treatment.
THE LONG TALE
While the health service is understandably fatigued by the pandemic, eminently qualified critics are arguing that it should – and must – do better. This starts with recognising long Covid as a medical condition. ‘Until we have a solid understanding of long Covid, and ways of objectively measuring cases, women risk not being believed when reporting their symptoms,’ says Dusenbury. Dr Nisreen
Alwan, associate professor in public health at the University of Southampton, who’s suffered with long Covid symptoms since April, agrees. ‘If we’re not measuring it, we don’t know how common it is, and then we’re not using it to inform our response to the pandemic,’ she says. In December, the Office for National Statistics estimated that 186,000 people in England could currently be suffering, with some suggesting that the latest ‘third wave’ of Covid-19 may be generating 4,000 new long Covid cases a day. Aside from treatment, this is about providing relief to sufferers, whose family, friends and employers are still unable to understand why they haven’t recovered, and giving them access to financial support, like sick pay.
A key factor that separates long Covid from other hidden health conditions, which might aid prompt progress, is that hundreds of healthcare workers are still too unwell to return to the front line; a recent BMA survey found that almost 30% of doctors who had tested positive have been left with fatigue. Progress is already underway. NHS England has announced a £10million investment in research, as well as 81 new post-covid clinics. And in December, guidelines published by the National Institute for Health and Care Excellence (NICE), its Scottish counterpart and the Royal College of GPS – which finally listed 28 common symptoms, and a code for GPS to record cases – stated that hospitalised patients would get a long Covid check after six weeks. While it sounds promising, 90% of those suffering were never hospitalised, and many clinics are refusing GP referrals from them. There’s still a sense among experts that, understandably, no one wants to make conclusions about long Covid before the science has caught up, but the clock is ticking, with women’s livelihoods on the line.
In October, Amy signed herself off from the company she co-owns. ‘As an editor, I use my brain all the time, but now I find that I can’t hold a conversation or spell words, so
I can’t trust myself to run my business,’ she says. As for Sophie, being too unwell to generate a stable income – with government financial support failing to cover half her mortgage – meant she was forced to move in with her parents. ‘I need to work, but I have no idea when I’ll be well again,’ she explains. Dr Alwan echoes her worries: ‘Having children to support is an added anxiety for me – will I one day be too ill to work and pay our mortgage?’
Long Covid is upending people’s lives – particularly, according to current data, women’s. Considered in the context of a pandemic that has set gender equality progress back by an estimated 50 years – women have lost jobs at higher rates, and the burden of childcare and housework has seen one in four in professional fields cut their hours or quit – the outlook looks bleak. And yet, like every women’s struggle in history, it’s through the mobilisation of those suffering that change will be forced. The first shoots of long Covid people power sprouted in the US in April with the Body Politic Covid-19 Support Group, whose thousands of members include a group of researchers who went on to create the first of its kind ‘Patient Led Research For Covid-19’ project, which has now teamed up with UCL. The following month, in response to the viral hashtag #Longcovid, Claire Hastie, a single mother from Birmingham, created the Long Covid Support Group on Facebook – which now has over 35,000 members, three-quarters of whom are women – as a ‘virtual call to arms’. They won’t be keeping quiet about this, and nor will we.
‘All In’ is a gender equality initiative by our parent company, Hearst, designed to challenge social norms, unconscious bias and misaligned perspectives. Tell us how gender inequality is affecting your health by getting in touch on Instagram (@womenshealthuk) or by emailing us on womenshealth@womenshealthmag.co.uk
‘I need to work, but I have no idea when I’ll be well again’