‘It felt like I was never going to get better’: patients navigating long Covid | Long Covid

Long Covid is now estimated to affect 2 million people in the UK, and almost 145 million globally. It’s a complicated diagnosis to receive and those affected have to cope with both the physical symptoms and the psychological strain of having an illness that is not yet well understood and does not have well-established treatments. We heard from three long Covid patients on how they navigated this journey.

Dylan, 10: ‘It felt like the doctors didn’t believe me, which made me really sad’

Unlike many adults who caught Covid at the start of the pandemic, seven-year-old Dylan didn’t have a continuous cough or fever when he became ill in late February 2020. Instead, he had bad stomach pains, bouts of vomiting, night sweats, aches and extreme tiredness.

When he started complaining that it was difficult to breathe, his mum, Heidi Bohrn, initially thought he was having a panic attack. An NHS adviser had already told them to avoid hospital unless Dylan developed a fever, because of the risk of catching Covid.

.

Several days later, Heidi was also experiencing breathing problems but with no Covid tests available, the family held tight. Six weeks later, Heidi was improving. However, Dylan’s problems had only just begun.

He began vomiting bile every night, and his heart and breathing problems returned. Other seemingly random symptoms – a rash on his stomach, nosebleeds, involuntary shaking – would appear and disappear, as if on a loop.

At the start of 2020, Dylan had been a healthy child growing up in Buckinghamshire, UK. A video taken in January captured him happily splashing about in the waves during a family cruise to the Caribbean. Now he struggled to get out of bed most days, let alone play with his toys and friends.

Throughout the pandemic, children’s experiences of Covid have been largely downplayed. Because they seemed less likely to become seriously unwell, the general assumption was that, unless they were unlucky enough to develop a rare but serious condition called multi-system inflammatory syndrome, they would be fine.

Heidi Bohrn and son Dylan.Heidi Bohrn and son Dylan. Photograph: Graeme Robertson/The Guardian

We now know that up to one in seven children and adolescents still have symptoms 15 weeks later – including unusual tiredness and headaches – while about one in 14 have five or more persistent symptoms. And, whereas trials for potential treatments for adults with long Covid have finally begun, none of them involve teenagers or children.

“The biggest challenge is that GPs don’t know how to recognise long Covid, and they don’t understand when to refer,” says Sammie McFarland, founder of the Long Covid Kids support group. “We’re still fighting against that early narrative that children weren’t affected. It has created a barrier to getting any support or belief.”

Although Heidi had private healthcare insurance, she had to fight to get Dylan seen by a doctor. When he was finally assessed, it was to check his chest pains weren’t symptomatic of an underlying heart condition. They weren’t.

“The doctor didn’t believe it was long Covid,” Heidi says. “He kept saying, ‘Kids don’t get it.’ Because we didn’t have a positive PCR test, they were in complete denial. I think that’s what upset us most: because there’s no physical test that shows a biomarker [for long Covid], it must be all in your head.”

Frustrated, the family turned to internet support forums. “The support, emotionally and psychologically, has been immense,” says Heidi. “Dylan’s also been chatting to other kids, so it’s nice for him to feel like he’s not alone”

They found practical suggestions online too. Because some adults with long Covid had anecdotally benefited from taking antihistamines, some parents had tried giving them to their children, with some success. After speaking with a pharmacist, Heidi suggested Dylan give them a try. She also started him on a low-histamine diet (avoiding foods such as oranges, bananas, spinach and tomatoes, and cured/processed meats) and a gluten and dairy-free diet, plus a probiotic and various nutritional supplements . “I generally feel like it helps him with a slight improvement – particularly with his sleep and stomach pains – but he still suffers extremely,” Heidi says.

No clinical trials have yet been published to support this approach. David Warburton, a professor of paediatrics at Children’s Hospital Los Angeles, says: “I do really feel for these parents, and I can understand their frustration with the medical system. On the other hand, as a physician, you don’t want to be prescribing something when you don’t understand what it’s doing. And you don’t want to do harm.”

Warburton serves on a committee for the US National Institutes of Health’s Recover initiative, which is currently trying to prioritise potential treatments for long Covid that could be tested in clinical trials – including antihistamines. “For each of these things, we have to consider the safety profile, the available evidence and the potential benefit-to-toxicity ratio. It is a massive task, which is proceeding as fast as we can go.”

Over months, Dylan’s symptoms slowly began to improve; he even managed to attend school for a couple of days a week. But then, in October 2021, he caught Covid again. About six weeks later, the vomiting returned – often 10-15 times a day. “He was unable to go to school from then onwards, really,” says Heidi.

This time, Dylan was referred to a gastroenterologist. The only obvious abnormality they detected was low stomach pH, for which Dylan was prescribed a drug that reduces stomach acid production, and another typically used to prevent nausea and vomiting associated with cancer treatment. This helped, but the other symptoms persisted – and so the doctor referred Dylan to a long Covid clinic.

While waiting for that appointment, Dylan caught Covid a third time, which set him back again.

Finally, in late June 2022, Dylan’s appointment at the long Covid clinic arrived. They didn’t have a protocol to offer yet, but they listened; the session lasted one and a half hours. “It was the first time he’d really been listened to, so it was really good,” Heidi says.

So far, he has seen a physiotherapist, who has given him some gentle stretches and exercises to help build up his strength, as he was limping on his left leg due to muscle pain. He has also been assigned a psychotherapist, who drew up a plan for a gradual and phased return to school.

“At the beginning, it felt like the doctors didn’t believe me, which made me feel really sad. I felt like I was never going to get better,” says Dylan, who is now 10. “My last visit was completely different, the doctors spent time understanding me and I can see they really want to help me. They made me focus on that, and I know I can get better with time.

“It was nice going back to school, and it has made me feel a lot better knowing that I’m not going to get stuck like this. I’m mainly looking forward to playing sports, and playing with my friends.”

Most of all, Dylan is looking forward to visiting his grandad, who lives in Spain. “I haven’t seen him in person for three years,” he says.

Heidi is currently planning a trip there, but she remains worried about Dylan catching Covid again. “It’s just a matter of when, not if.”

– Linda Geddes, science correspondent

Candace, 45: ‘I was very unkind to myself’

Candace.Candace. Photograph: David Levene/The Guardian

“I am not a singer,” Candace admits. “I’m not ever going to sing in public. So it was a little bit daunting when they asked us to turn our mics off mute.”

Candace, a 45-year-old HR director from Hertfordshire, UK, is describing her experience of the English National Opera’s Breathe programme. Over the past six weeks, she and other non-singers have been learning lullabies together over Zoom under the supervision of a professional singing coach. The aim is not to hit the right notes, but to learn to breathe again after struggling with breathlessness, one of the most common symptoms of long Covid.

I accompany Candace to a lunchtime session. Our coach, Lea, starts by asking everyone to rate their current energy levels (responses range from 7% to 90%) and then moves on to stretching and breathing exercises. He has a calm, encouraging demeanor and a cosy-looking dog in the background. We’re invited to join in with a lilting Irish lullaby, Connemara Cradlesong. “Picture yourself somewhere safe,” Lea tells us. “We’re going to put a bit of that sea air and that safety into our hum.’”

Candace first became ill in late February 2020. As an asthmatic, going down hard with coughs was familiar, but when she started struggling to breathe she headed to the hospital, where she was admitted for three days. Covid was not yet on the radar of UK doctors and she was initially diagnosed with pericarditis, an inflammation of tissue around the heart.

By September, the cardiology team had changed their mind and concluded that Candace was suffering from long Covid. The diagnosis was a relief as it finally gave her an explanation for her symptoms, but she wasn’t getting any better. “I couldn’t do day-to-day things,” she says. “I’d get breathless trying to cook and my heart rate would just go absolutely crazy.” Her favorite activities – hiking, camping with her teenage children – soon became out of reach.

Candace’s initial instinct was to push on through. When we chat over Zoom, she has the brisk, friendly air of someone who is used to getting things done at work. “Life went on,” she says. “I’m the head of HR for an organisation and we had to furlough staff, we had people having mental health problems. I’d be on calls at 8pm at night. I was very unkind to myself.”

Things went from bad to worse. Even minor exertion would leave her gasping for breath (breathlessness affects roughly one-third of those with long Covid, according to the Office for National Statistics). And because lying down worsened her symptoms, she fell into a cycle of sleeplessness and anxiety.

After more than a year’s wait, she was finally referred to the long Covid clinic at Imperial College NHS Trust in March this year and offered a place on the ENO Breathe programme.

“I did think, ‘How are they going to be able to help?’” Candace says. “But I was at the point where I was willing to try anything.”

A challenge in treating long Covid is that symptoms vary widely and patients’ underlying pathology probably falls into several different subgroups. “Normally in medicine, you try to understand what’s causing the symptoms and then you try to treat the cause,” says Dr Keir Philip, a clinical research fellow at Imperial College London, who led a randomised controlled trial on the efficacy of the ENO Breathe intervention.

In the case of breathlessness, Philip says, people often develop disordered patterns of breathing, which can mean that the symptom persists even after the underlying pathology has begun to recover. Anxiety about breathlessness can also make the problem worse. This is not to suggest psychological factors are the sole cause, but they are an element doctors can help with. The beauty of doing the rehab through singing is that patients “focus on their breathing, without focusing on their breathing”, Philip says.

The trial has been a success, with data showing that 81% of participants reported improvements by the end of the programme and 74% saying their levels of anxiety were better. Candace says this has been her experience.

“A turning point for me was around posture,” she says. “You’re often taught to hold in your tummy and have a straight back, but this meant I wasn’t breathing down to my tummy. I was more of a shallow breather. I’ve learnt that it’s OK to let your tummy out every now and then because it has an impact on how deeply you can breathe.”

She also learnt to pace herself accordingly. “It’s frustrating because in my mind I’m a quick person,” she says.

“I know that physically I’m still on a journey,” she adds. “I’ve played tennis competitively since I was 11 years old. I’d love to be able to get back on a court but I’m not ready yet.”

We catch up again two weeks later, after Candace has had more physiological tests at the clinic. She still doesn’t have a clear answer but she feels she’s making a gradual physical recovery. Knowing she has a doctor, rehab nurse and physiotherapist involved in her ongoing recovery feels like an important safety net. This week she’s started doing some gentle cycling – the first time she has actively exercised.

“It’s just so nice to be able to do things again,” she says. “My balance of what’s been tough and what’s been normal has been changing and that just makes me so happy.”

– Hannah Devlin, science correspondent

Asad Khan: ‘When you become a patient, it doesn’t matter what you were before’

Dr Asad Khan.Dr Asad Khan. Photograph: Jill Mead/The Guardian

When it comes to long Covid, there is no shortage of articles describing desperate patients and maverick doctors. But for Asad Khan, it is a crass picture.

“I just felt like, well, they’ve not lived our life. It’s not sensitive,” he says.

Before the pandemic, Khan was a respiratory consultant in Manchester, a keen gym-goer and an active family man who enjoyed travel. But all that changed when he caught Covid.

“I got it in November 2020, working in a respiratory Covid ward with inadequate PPE,” he says. “I was in bed, high temperature, feeling absolutely dreadful, off my food and drink for about a month.”

But duty called and Khan returned to work. Within days, there was a change for the worse. Khan’s symptoms ranged from chest pain to palpitations, shortness of breath, a distressing rash over the face and neck, a need to pass urine every five to 10 minutes, and a pulse rate up to 160. “As we know now, going back [to work] too early or exerting yourself is precipitant for long Covid, and I think that is what happened,” he says. “I was a complete mess. And I had no idea what was going on.”

After joining a Facebook group for doctors with long Covid, Khan was advised he may have mast cell activation syndrome – a condition in which immune cells release too much of certain substance into the body, resulting in symptoms of an allergic reaction – and postural tachycardia syndrome, described by the NHS as an abnormal increase in heart rate that occurs after sitting up or standing. The group also suggested the investigations and tests he might need.

“That’s really the story of my life since then,” says Khan. “Speaking to other people who have tried things and have been successful, going and finding a physician who is willing to push the boundaries for me, and then obtaining a treatment. I have been my own coordinating consultant, there hasn’t been anyone to do that for me.”

The disappointment and frustration Khan feels is palpable as he describes how he was let down by some colleagues who he feels put up barriers to care.

“When you become a patient, it doesn’t matter what you were before. There is this power imbalance, which means that you have no credibility and you’re not reliable. And you’re potentially exaggerating your symptoms, and you’re just out to get some drugs. That’s how I felt in lots of encounters,” he says.

Dr Betty Raman, associate professor of cardiovascular medicine and long Covid expert at the University of Oxford, says patients are desperate to feel better, but that there are currently no evidence-based treatments for long Covid, creating a difficult situation.

“The lack of treatment is further complicated by an absence of definitive diagnostic tests which has fueled ongoing anxiety and frustration among those living with the condition and has led to a growing distrust of patients for healthcare services and medical professionals,” she says.

By September 2021, Khan had deteriorated to the point that even a sliver of light or slight noise was intolerable, and he was largely bed-bound – just looking at a phone screen made him vomit.

That month he travelled to Germany for a procedure called apherisis, or “blood washing”, in which blood is filtered to remove microclots and inflammatory molecules – the latter having been found in the blood of people with long Covid by researchers including Prof Resia Pretorius, an expert in clotting physiology at Stellenbosch University, South Africa.

Khan says the apherisis and anticoagulation therapy made a significant difference to him, although his progress has been set back by several bouts of Omicron.

It is far from the only potential therapy he has received. The list of experts Khan has seen and treatments he has tried seems exhaustive; appointments with cardiologists and immunologists have occurred alongside the use of complementary therapies like acupuncture, traditional Chinese medicine, cranial osteopathy. He has also tried breathwork, cryotherapy and neutracteutials.

“All of this has obviously been very expensive, it has cost approximately £50,000,” he says, adding he no longer has any savings.

But as we chat over the phone, there is a clearly an elephant in the room. Many of the approaches Khan has tried have little evidence to back their use, or are experimental.

Raman says excessive clotting and vascular problems have gained considerable traction as potential causes of long Covid. However, systematic evidence from rigorous blinded placebo-controlled clinical trials that test apheresis and anti-clotting regimens in long Covid are still awaited.

Prof Ami Banerjee of University College London, who is running a trial into possible treatments for long Covid, is among those who are uneasy about embracing unproven “cures”.

“I do not judge or blame patients at all. That’s not my area. In fact, my aim is to make sure that patient safety is paramount,” he says.

Banerjee says there has been slowness and even neglect in developing treatments and trials for post-viral conditions, adding that some people with long Covid have now been waiting for two years for progress.

But, he warns, being in such a position can increase a person’s vulnerability, meaning they may be willing to try almost anything – even if there is little evidence of effectiveness or data on patient safety.

“What I’m saying is that we should not change the bar of the science or of the safety that is required just because it’s long Covid,” he says. Instead, he says, research needs to step up.

“I’m actually arguing 100% for more trials and quicker trials,” says Banerjee, adding he has faced a number of regulatory hurdles to get his own trials up and running.

While Khan also backs the use of clinical trials, he says many patients cannot wait for their results.

Has the shift from clinician to patient affected Khan’s views?

“I would have said, a year ago, wait for the trials. But now what I will say is, there is evidence that these patients have, for example, micro-clotting, they’ve got that dysbiosis. Let’s demonstrate these things. And let’s try these treatments, understanding the risks and benefits, whilst trials are waiting to report,” he says.

“Trials take forever. And, you know, people say that good research can’t be rushed. Well, that’s nonsense. I mean, it can and should be – it was rushed for acute Covid with the Recovery trial.”

Yet Banerjee is cautious about a gung-ho approach to potential treatments. “That’s not what we do in any other disease,” he says, adding patients with long Covid should be treated with the same respect, the same science and the same care, as if they had heart failure or leukaemia. “Everything that’s done in healthcare should be based on evidence, experience and expertise.”

To go out on a limb and try something different may sound like the move of a brave medical professional but it could, argues Banerjee, endanger patients, while understanding of diseases, and how to treat them, is best advanced when potential therapies are examined in standardised randomised controlled trials, to avoid biased results.

“The way to do it would be to do trials at scale, rather than going off to unregulated places and providers,” he says.

“Not everybody’s bad. But there’s a clear conflict of interest in anybody who’s selling these treatments, without evidence at these costs. You have to understand that they’re not totally neutral and unbiased in this situation.”

Social media, he adds, can exacerbate the situation. “All kinds of unscrupulous people are selling stuff to a vulnerable patient group, who might then go on Twitter, and say, ‘I’ve tried five things and this has worked for me.’ Yet, that could be a placebo effect or unrepresentative of the effect on all patients. This is not a step forward in healthcare or in science in my book – rather, it could be exploiting a vulnerable population.”

The narrative of vulnerable patients and radical doctors is criticised by Khan.

“It does not take into account that patients are desperate because they are not getting any meaningful help on the NHS, and these doctors are amongst only a handful that are willing to push the boundaries, take risks and help them,” he says.

For Raman, the perceived mismatch in attitude between healthcare professionals and patients is familiar.

“Many doctors have tended to adopt a more cautious approach [ to procedures such as apheresis] which, according to some [patients], is inconsistent with the sense of urgency witnessed in the treatment or prevention of severe acute infection,” she says.

But, she adds, such hesitancy may be rooted in the ethical framework by which doctors are bound: the Hippocratic oath.

Raman says that for many with long Covid, personal experience or anecdotal reports of successful treatments offer the only sources of hope for a cure.

“Many are willing to attempt any form of treatment, irrespective of the costs or potential for adverse effects,” she says. That, Raman adds, should serve as a stark reminder to public health authorities and governments of the need to support ongoing clinical trials in long Covid to prove or disprove specific recommendations.

“In the absence of such efforts, the economic burden of long Covid – including increasing unemployment and complications from untested treatments – is likely to multiply, imposing further pressures on our already stretched and vulnerable health care system,” she says.

– Nicola Davis, science correspondent

This article was amended on 13 October 2022 to correct some misspellings of Asad Khan’s surname.

Leave a Comment

Your email address will not be published. Required fields are marked *