They never officially had Covid-19. Months later they’re living in hell

The last day Bethany Wells McGraw wasn’t in pain was a Sunday. It was March 15. A day later she had her first symptom: a sharp pain in her left ear canal which she thought might be the first sign of an ear infection. By March 17 she was hit with waves of nausea and diarrhoea but at the time her symptoms didn’t match what we thought we knew about Covid-19. On Friday March 20, McGraw could no longer ignore how ill she was. “It was unreal. I’ve never lived through anything so terrifying, I could feel my lungs closing,” she says. Her temperature rose to just under 39.4 degrees Celsius and her body started convulsing. “I was literally thrashing in bed,” she says. “My arms and legs were kicking uncontrollably. I felt like I was possessed.”
That was day five of her illness. McGraw is now on day 179. For the last five-and-a-half months her body has played host to a revolving cast of symptoms: fever; chills; chest pain; shortness of breath; dizziness; rashes; diarrhoea; vomiting; coughing up blood; extreme fatigue and body aches that feel like stab wounds. “There was a point when I was so sensitive to cold that exposed skin felt like it was frostbitten. Even in warm temperatures, my fingers were turning blue,” she says. On some days McGraw is so exhausted that it takes her an hour to walk up the stairs, stopping every two or three steps to catch her breath.
McGraw is a Covid-19 long-hauler – one of a growing group of people whose symptoms linger for so long that it stretches into a debilitating long-term illness. Before she fell ill, McGraw ran a busy hairdressing salon from her home. Now she struggles to get herself through each morning, collapsing on the sofa at midday from exhaustion. “My house is in disarray because I haven’t been able to do anything more than the bare bones of survival,” she says. A few months into her illness her front garden became so overgrown that people started stealing from her porch, presuming that her house had been abandoned. “I feel like I’ve turned into Miss Havisham. I sit alone in my house, watching things decay around me. I can’t tell how bad it is because I can’t smell it.”

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No one knows for sure how many Covid long-haulers there are. Data from a symptom-tracking study run by King’s College London suggests that one in ten people may still have symptoms after three weeks. A small study of Italian patients found that 87 per cent of people hospitalised with Covid-19 were still experiencing symptoms 60 days after they fell ill. Another study from Germany found that 78 per cent of the Covid-19 patients they followed-up with had abnormal heart scans two or three months after their initial diagnoses while a survey by the British Medical Association found that a third of doctors had treated patients with long-term Covid-19 symptoms. On Facebook, which has become an informal meeting ground for long-haulers to share their stories and compare symptoms, the biggest support groups have tens of thousands of followers. Many of them have the exact symptoms that McGraw describes: brain fog; memory loss; confusion and loss of smell.
But McGraw has another challenge to add to her long list of difficulties: convincing people that she had Covid-19 in the first place. The 54-year-old from Portland, Oregon, never tested positive for the virus. According to the US Centres for Disease Control and Prevention, and its European equivalent, this means that she does not qualify as a confirmed Covid-19 case. In the US, more than 6.3 million people have been confirmed as having Covid-19. McGraw, as she nears her sixth month of suffering with long-term Covid-19 symptoms, isn’t one of them.
Many Covid long-haulers are in a similar situation. In May, a patient-led research team released the results of a survey of 640 people with long-term Covid-19 symptoms. Only 23.1 per cent of respondents had a positive test result, while 27.5 tested negative and the rest were not tested at all. In mid-March, when many long-haulers first became ill, tests were scarce and people who weren’t hospitalised were often sent home to self-isolate without a swab test to confirm if they had the virus. In the UK, the government restricted community testing on March 12; it wasn’t until May 18 that anyone with symptoms could access a swab test. But such tests can only tell if someone has Covid-19 at the time they are tested, and are most accurate if done around three days after symptoms first appear. By the time many long-haulers had a test – weeks or sometimes months after they first had symptoms – those tests often came back negative.
Antibody tests, which should be able to detect whether someone has been exposed to the coronavirus, aren’t foolproof either. Laboratory antibody tests for Covid-19 are often tuned to avoid giving people false positive results (telling them they’ve had the virus when they really haven’t) so people with low thresholds of antibodies may be missed by the tests entirely. Some tests also miss antibodies that are specific to certain parts of the Covid-19 virus, it’s possible that a person might have Covid-19 antibodies, but not the right kind of antibody for a test to pick-up. One long-term patient said that they didn’t want to take an antibody test because they were sure their result would come back negative even though their long-term symptoms matched those of people who had positive test results.

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Trapped in their beleaguered bodies, Covid-19 long-haulers are having to find the energy to fight just to be believed. In online support groups patients share stories about being ignored by doctors, pressured back into work by employers and disbelieved by friends because they don’t match what people think of as a Covid-19 patient. Chimére Smith, a middle school teacher from Baltimore in the US has had nine negative swab tests, but months after first falling ill, she’s still suffering with muscle weakness, extreme fatigue, body aches and memory problems. “Because I haven’t tested positive there has been an air of dismissal. It feels to me that doctors start to tell you that you’re anxious and depressed if they can’t find a diagnosis for you,” she says. “I’m depressed because I’ve been sick for four months, nobody seems to be listening to me, and no one seems to know what’s the problem.”

Adrian Dennis / AFP via Getty Images

Long-haulers defy our definition of Covid-19. Early in the pandemic it looked like Covid-19 was a disease of binaries. It either killed you, or left you with a mild illness. Its victims were old and had underlying health conditions, while the young, fit and healthy had little to worry about. Long-haulers confound this simplistic narrative. Many were hiking mountains or running half-marathons before they got ill, and now can barely make it to the end of the street. Others in their twenties and thirties wake up and find themselves so weak they have to crawl to the bathroom. None of the long-haulers I spoke to for this piece were ill enough to be admitted to hospital for Covid-19, but all of them have had their lives completely derailed by their symptoms.
Nisreen Alwan, associate professor of public health at the University of Southampton, says that governments need to start taking stock of people with long-term Covid-19 symptoms. “We’re increasingly seeing this is not the case, but that’s not really reflected in the statistics. And if it’s not reflected in the statistics, we can’t base policies on that,” she says. In doing so, we can move beyond an understanding that Covid-19 is a disease that is either deadly or mild. Without this data, we’re still lacking answers to some of the most basic questions about long-term Covid-19. Are people who had a more severe bout of Covid-19 in the first place more likely to suffer with long-term symptoms? Is it possible to divide long-haulers into sub-groups of people with shared symptoms? Who is even getting this disease?

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In the absence of official data, support groups are gathering their own. Hannah Davis, a researcher with the Body Politic Covid-19 support group surveyed long-haulers in May to paint one of the few pictures of long-term Covid-19 patients that we have. Long-haulers tend to skew younger and most are physically healthy before their illness. Their most common symptoms include brain fog, insomnia and difficulty concentrating. The disease is also unpredictable: 70 per cent of respondents reported experiencing new symptoms at different stages of their illness. But this kind of survey can only provide a snapshot. Anecdotally, many of the posts on support groups are from young and middle-aged women, but long-haulers involved in demographic research told me that this doesn’t convey the true range of people hit by the illness.
Faced with this uncertainty, long-haulers are forced to become experts on their own condition. Speak to enough of them and you start to see the hallmarks of a group of people well used to constantly reciting their experience over and over again in the hope that they can convince people they are ill. Long-haulers can pinpoint the exact moment they fell ill, and the date that they felt each new symptom for the first time. They know which symptoms doctors are familiar with, and which ones they are more likely to dismiss. They arm themselves with the latest research about how Covid-19 can affect the brain, heart and muscles.
“As a black woman it has been disturbing because I think the assumption from some of these doctors [is] that I don’t know enough medical information or terminology to be able to have a conversation about what is happening inside of my body,” says Chimére Smith, the middle school teacher from Baltimore. “I’ve had to become very impassioned with these doctors, challenging them, because I know my body better than they do.”
Like Smith and McGraw, Barbara Melville from Edinburgh never received a Covid-19 test when she first fell ill. The UK government suspended all community testing for Covid-19 on March 12 and it took two months before tests were made available to anyone with symptoms. This, one of the most damaging blunders of the country’s pandemic response, has saddled thousands of long-term Covid-19 patients with an extra burden of doubt and disbelief. By the time Melville could access a test it was 65 days after her symptoms first appeared. It came back negative.
“I think most of us [long-haulers] have not been hospitalised, [or] perhaps tested negative or negative for antibodies. They’ve got stigma there and possibly many other health inequalities to deal with,” says Melville, who is 37-year-old and runs an artificial intelligence firm. Like many long-haulers, she has become an advocate for people in her situation, putting together her own table of long-term Covid-19 symptoms and how they compare to other conditions.
Other patients are hanging on in the hope that their symptoms will eventually be classed as chronic fatigue syndrome (CFS) – a long-term illness that shares several symptoms with long-term Covid-19 including extreme fatigue. One hallmark of CFS patients is that their symptoms have lasted at least six months: an anniversary that long-haulers who fell ill in March are on the verge of crossing. Suzanne Hughes, who lives in Wales, is waiting until that milestone to talk to her GP about a referral to a CFS specialist. “I felt I must wait until it’s six months otherwise they’ll say, ‘We can’t actually do anything’,” she says.
In the meantime, long-haulers like Hughes are mostly left to manage the uncertainty by themselves. In May the NHS opened a rehabilitation centre for Covid-19 patients, but it’s mostly used by people who were hospitalised with the condition. On September 7, the UK government released a statement acknowledging that around ten per cent of people with mild coronavirus experience symptoms for more than four weeks, but the NHS guidance to doctors and community health workers still only refers to people who have been discharged from hospital after having Covid-19. There is an NHS website that offers advice about recovering from Covid-19, but much of the advice is only about managing symptoms and offers little information about the longer trajectory of the illness.
For Alwan, our lack of understanding about long-term Covid doesn’t just fail people who are suffering, it also warps our view of the pandemic. “There would be huge implications for quantifying long Covid systematically because the whole public health message changes,” she says. Would people be as keen to get back into the office if they knew that if they did catch Covid-19, there was a chance they could still be suffering months down the line? Acknowledging long-term Covid means recalibrating the way we calculate risk on a daily basis, but the alternative would mean blinkering ourselves to the full impact of this disease. “Sweeping these things under the carpet won’t work. It’s not going to go away. I think the only thing is to try and scientifically quantify it and then act accordingly,” says Alwan.

The Mary Seacole centre in Surrey is open to people hospitalised with Covid-19 who are still recovering from the disease
Victoria Jones / WPA Pool / Getty Images

Scientists have known for decades that viruses can wreak long-term havoc on the human body, but how they do that remains poorly understood. Like many diseases that are more commonly documented in women, post-viral syndrome has historically been dismissed and overlooked. In an 1987 article about post-viral syndrome published in the British Journal of General Practice one Norfolk GP wrote that “many features of the syndrome point to hysteria and altered medical perception as causes.” Although the language has changed, many long-term Covid-19 patients also report being told that their symptoms are imagined, or caused by anxiety.
Yet we only need to look at the epidemics of the recent past to see the lingering impacts that viruses can have. One study of 22 chronically-ill SARS patients in Toronto, Canada, found that even 20 months after the virus all but one of them were unable to return to their former occupations. This small cohort showed similar symptoms to CFS patients: chronic fatigue, pain, weakness and disturbed sleep. A larger study of 107 Toronto patients found that after the one year mark, 87 per cent of them still had symptoms and 17 per cent hadn’t returned to work at all.
Avindra Nath is a neurologist at the National Institute of Neurological Disorders and Strokes in the US who specialises in understanding how infectious diseases impact the brain. When the Covid-19 pandemic took hold, he received a flood of emails from people reporting long-term neurological complications such as brain fog, tingling muscles and sleep problems. “We expected that to happen. A percentage of people [with viral illnesses] will end up with a syndrome called [myalgic encephalomyelitis or CFS]. That happens in almost all viral infections,” he says. “And this affected a large population, so it’s not a surprise that you have a significant number of people who are complaining of these post-viral syndromes”
What we don’t know is why infectious diseases cause these long-term symptoms. One hypothesis is that the immune system cranks up at the point of infection but then never completely calms down. Nath likens it to an army that keeps on fighting once the enemy is gone and ends up killing its own soldiers instead. This might explain why people with post-viral syndrome show such wide-ranging symptoms, but it doesn’t tell us why some people have this kind of reaction while others experience a relatively short illness. This could be influenced by genetics, the amount of virus someone was exposed to, or it might be down to the viral illness they’ve had in the past. For now, these educated guesses are the best we have.
Nath is running two studies to investigate the long-lasting impact that Covid-19 might have on the human brain. One study will involve people who had neurological symptoms at the time they first fell ill, while the other will study people suffering with long-term symptoms. The participants will be admitted to the clinic for a couple of days and have lung tests, MRI scans and tests of their neurological function. The studies will be limited to people who have had positive antibody or swab tests for Covid-19. “I think we need to make sure that we’re studying the right patient populations because otherwise we’re going to put a lot of effort into it and nobody’s going to claim that you actually study the right thing,” says Nath.
For long-haulers without positive test results, not being able to take part in clinical trials is another source of frustration. Chimére Smith, the Baltimore middle school teacher, received information from her hospital about a study into long-term Covid, but wasn’t allowed to take part. Black people have historically been underrepresented in clinical trials, she points out, even when the trials concern conditions that disproportionately impact people of colour. In US trials of drugs to treat multiple myeloma – a type of blood cancer – fewer than five per cent of participants were African American, even though 14 per cent of all people diagnosed with the disease are African American. According to data from the National Urban League, black Americans are almost three times more likely to contract Covid-19 than white Americans.
In the UK, a handful of groups are starting to explore the long-term impacts of Covid-19. At the University of Nottingham’s School of Medicine, Charlotte Bolton was leading a study of people who had been discharged from hospital with Covid-19 when she started receiving calls from GPs who were inundated with patients who still felt ill months after first experiencing symptoms. “A lot of them are describing really quite desperate symptoms of severe fatigue, breathlessness, anxiety and weight loss. They can’t go back to work,” she says. She’s just got funding for a study to take these GP referrals and track how the patients are functioning and tailor recovery programmes to their needs. Many long-haulers report week-long setbacks in their recovery after trying to push themselves, and Bolton says that knowing the right kind of rehabilitation to offer will have a huge impact on their recovery. “High level intensity exercise after you’re very fatigued in the muscle could just wear a patient out,” she says.
At Sheffield Hallam University, Caroline Dalton is involved in a study to track the recovery of patients with long-term Covid-19 symptoms. She says that comparing the virus to flu – a common feature of early coverage of the pandemic – is dangerously misleading. Recovery from Covid-19 for some might be closer to a serious bout of pneumonia, she says. “People who’ve had full-on pneumonia talk about a very, very long recovery. They talk about not feeling back to normal for a year or something like that,” she says.
These projects – and others like it – are just getting off the ground, but the recognition that long-term Covid-19 has received so far has largely been down to the tireless advocacy of the patients themselves. The UK-based group LongCovidSOS orchestrated a campaign to send a letter to the government urging it to commission research into Covid-19 and develop better care for patients. Since then, the group has worked with the NHS, WHO and universities to increase understanding of the condition. The message seems to be getting through. On September 8, health secretary Matt Hancock mentioned long-term Covid-19 as a reason for young people to take the virus more seriously. “We’ve seen younger people make the argument that they are less likely to die of this disease, but young people can have debilitating long-term consequences from [it],” he told parliament.
But as confirmed cases in the UK and Europe creep upwards again, threatening to put the slow return to normal life on hold, many long-haulers are left wondering whether they will ever be able to get back to the life they had before. “I’ve got three boys, I can’t play cricket with them. It’s been very difficult being very emotional in front of them,” says Mark Jones*, a 46-year-old long-hauler who works in the City of London. When we speak at week 22 of his symptoms, Jones was still feeling foggy and fatigued. Before he fell ill, he would run half-marathons at the weekend, but now a good day means getting on the train to go to work. “My goal is to get through to Christmas, I can’t really think further than that,” he says.
*Name has been changed
Matt Reynolds is WIRED’s science editor. He tweets from @mattsreynolds1
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