Long COVID Patients Are Taking Their Health Into Their Own Hands

It’s early on a Monday morning, and a line of people are waiting to have their blood drawn at a stranger’s kitchen table in east London. 

They are all COVID-19 long haulers – those suffering persistent symptoms weeks and months after initially contracting coronavirus – and are hoping that, by coming here this morning, they can finally get some answers. 

Before contracting COVID, Harry was happy and active; he recently moved back to the UK from the US, started a new job and moved into a new home. But over the past eight months, his life has changed completely. He has experienced long COVID symptoms, including breathlessness and brain fog, forcing him to move back into his family home to be cared for by his mum. Although doctors reassured him that he was “fine”, he was hospitalised after walking up a hill because he was so breathless. 

Now, after months of research and experimenting with different medications, Harry says he has mostly recovered.

“I’m very fortunate, and I put a lot of my recovery down to that too,” he says. “My company has been very supportive – they’ve let me do half days for six months, and they’re still paying 70 percent of my salary so I can properly rest. A lot of people don’t have the safety net I’ve had. Most people don’t have that, or much time to wait for randomly controlled trials to get better. The majority of long haulers are unable to work, or bedridden.”

Sitting in his kitchen, he says this is why he’s so invested in helping fellow long haulers access the treatment he has. He organised the blood collection in his home, hired a professional phlebotomist to draw the blood and ensured that the samples make it safely from his fridge onto dry ice and then to a lab in California.

These blood tests should reveal biomarkers associated with long COVID. Based on the combination of biomarkers identified, each of the 20 long haulers waiting here today will receive a recommendation for drugs already on the market to treat non-COVID related illnesses, which they hope will alleviate their symptoms for good. 

The tests and recommendations come from the founder of California-based pharmaceutical company IncellDx, Bruce Patterson, who was the Medical Director of Diagnostic Virology at Stanford University Hospitals and Clinics, and took an interest in COVID-19 after studying HIV-1 pathogenesis and reservoirs. Patterson’s recommendations to treat symptoms reported by most long haulers include an SSRI usually prescribed for depression or OCD; an anti-parasitic drug usually used to treat parasitic worm infestations; and an antiretroviral that’s used in the treatment of HIV. 

However, these lines of treatment are unorthodox: no drugs – new or existing – have been approved for the treatment of long COVID by any medical bodies. In fact, the European Medicines Agency and the FDA have both advised against the use of Patterson’s anti-parasitic drug for the treatment of COVID. None of the patients I speak to are aware of any similar “Dallas Buyers’ Club” schemes in the UK – where people have their blood tested and help each other find medication – and I could not independently find any others.

“I’m honestly pinning all my hopes on this,” says Ed, a teacher, waiting to be called in to have his blood drawn. “I can’t work. I don’t think I’ll ever be able to teach again if it stays like this. I’m having to think about what job I can do where I can sit down all day – because I get so tired – and doesn’t require any brain work, because I can’t think straight.” 

After initially contracting coronavirus, Ed felt mostly fine for a couple of months, aside from a few aches and tiredness. Then the symptoms – brain fog, rapid heart rate and breathlessness – all came rushing back, and 14 months later are still plaguing his life.

“I remember thinking, ‘I'm having a heart attack.’ It literally felt like my heart was about to explode out my chest,” he says. “It was around June that my mum suggested I look online. So I looked and, honestly, it was a revelation of, like, all these people saying exactly the same thing.”

If you search Facebook for “long COVID”, “long haulers” or anything else to that effect, there are dozens of groups offering up their stories and advice. In England alone, there are over 367,000 people still experiencing long COVID symptoms over a year after their initial infection, according to data from the Office of National Statistics. 

Of that number, plenty have similar stories to Ed, but symptoms vary. In one Facebook group, a woman posts photos and videos of lumps of hair the size of her hand, asking whether anyone else is experiencing major hair loss. Many others mention suffering from postural orthostatic tachycardia syndrome (POTS), which affects blood flow and can result in lightheadedness, fainting as well as a rapid heartbeat. There are others who have been experiencing these kind of symptoms for three months, and some, like Ed, whose journeys started in March of 2020. 

One thing all of the long haulers interviewed for this piece have in common is that after over a year of job losses, the death of friends and family members, and the struggles of isolation, they feel let down. Despite the hundreds of thousands of people reporting having long COVID, they believe some doctors in England are downplaying its existence and severity.

James is waiting outside to have his blood drawn. He says he used to mountain bike regularly, but his long COVID has forced him to stop every form of exercise. He’s desperate to recover and get back to doing what he loves, but claims he’s been accused of making up his symptoms by a doctor. 

“The doctor went, ‘Really? [He’s] probably just lost his job and didn't really want to get back to work.’ But I haven’t lost my job – I’ve kept on working, and I love my job,” he says. “There’s no reason for me to be saying this, I’m not trying to get anything from anyone. They just assume that you’re a lazy toe rag.”

Surprisingly, given that the NHS has identified long COVID as a legitimate syndrome, the doctors and nurses who are queuing to get their blood taken share similar stories to James. Yu, a doctor who worked in an intensive care unit during the “second wave” in late 2020, says that management were sceptical of her taking sick leave for long COVID. “I had to physically turn up to work at the three-month point,” she says. 

When we speak, Yu is clearly struggling for breath, as she has for the past six months. She has to stay seated, head resting against a wall. Her managers only believed her after seeing how bad she was.

“When I went in, I was struggling to breathe,” she says. “I ended up sitting in the corner, not saying anything for the hour. In the three months I’d been away, I hadn’t worn a mask for longer than maybe ten minutes, so I couldn’t breathe during this. By the end of it, they grabbed me and directed me down to a chest clinic.”

Helen – a junior doctor who has just finished having her blood sample taken – agrees that, in her experience, the medical world has been unsympathetic.

“That’s been the most frustrating thing, is no one really knows what to do or is even willing to help,” she says. “But the medical world is very cautious. There’s no treatment that has been shown to work by any randomised control trials, so it’s really hard to get prescribed anything, because [doctors are] worried about their licence.”

Instead, most of the long haulers here have been told that they’re suffering from anxiety. Shaney, for example, went to A&E 12 times due to a combination of symptoms ranging from breathlessness and tinnitus to purple swollen toes possibly caused by small blood clots – otherwise known as “COVID toe” – and bloody urine.

“They offered me talking therapy. Just one phone call – that was it,” he says. “I don’t need talking therapy. I have physical symptoms that need resolving. At the time, they weren’t testing for coronavirus, so I couldn’t get anything to show that I had it.”

For those who first had COVID symptoms during the early stages of the pandemic, not being able to produce test results is another common reason for being dismissed by a GP, according to the long haulers. At the start of the pandemic, testing in England was scarce: in March of 2020, the UK government announced in multiple press conferences that they were aiming for 25,000 people to be tested per day. However, by the 1st of April, the most they had managed was 9,793 in one day.

For some long haulers, treatment means a long COVID clinic; in October of 2020, NHS England announced a £10 million investment into over 60 specialist centres across the UK. According to the press release, patients would have access to doctors, nurses, occupational therapists and physiotherapists to offer “both physical and psychological assessments and refer patients to the right treatment and rehabilitation services”. 

Ed says he only got a referral due to his girlfriend’s persistent phone calls, but that he hasn’t found the clinics to be useful. “They’ve called once every three months,” he says. “The woman I spoke to was quite honest. She said, ‘You’re teaching me.’ They don't have any clue. The only thing they've suggested is putting me on a low dose of beta blockers [to lower his heart rate].”

According to NHS England, further funding for long COVID services is due to be allocated soon. An NHS spokesperson said: “Within a year of long covid emerging as a condition, the NHS has invested £34 million to establish over 80 long covid clinics in every local health area in the country – the clinics are already open and helping thousands of people get support.

“The NHS will continue to respond quickly as new evidence emerges on long covid and anyone who has long lasting symptoms of the virus should get in touch with their local GP so the NHS can provide the care they need.”

There is some skepticism amongst long haulers around the legitimacy of Patterson’s recommended medications when it comes to treating long COVID. One long hauler, who asked to remain anonymous as he works in the medical field, says he is likely to use the drugs out of desperation anyway. “If you’d asked me a year ago would I take this medication, definitely not. But right now, the answer is probably yes,” he says. 

A post in one of the Facebook groups suggests that IncellDx shouldn’t be trusted, based on another long hauler’s anecdote, in which two vials of the same blood came back showing different results. But many other members of the group were quick to claim that this was just a rumour. 

Patterson understands the hesitancy around his recommendations, but stands by them. “People poo-pooing using this drug approach, with repurposed drugs that are already available, is just not a pandemic mindset,” he says. “As physicians, we have a ‘do no harm’ mantra, which we absolutely should. But if we’re using drugs that we’ve used for other indications, and we know their safety profile, why would we wait eight to 12 months to do a clinical trial if we know [their] efficacy? We could hold off and do a trial and people would suffer while we waited for the results, or we can just use real world experience and treat them.”

Ku, who has been struggling with long COVID since March, was skeptical about Patterson’s legitimacy after finding out about him through Facebook. “Compared to the UK, there’s definite market incentives at play in American healthcare. And I was like, ‘Are these guys legit?’” she says. “But all these people just kept turning up being like, ‘I'm on them, and I’m actually managing to have enjoyable stretches of time.’”

Now, Ku has become one of the many long haulers who claim to have had success using the drugs suggested by Patterson. She says her symptoms – including intense chest pain, inability to breathe and digestive issues – are finally starting to improve, after four weeks of using the medication. “I did a couple of days at a low dose, and instantly my tolerance for exercise improved,” she says. “I was walking down the street. I was not suffering weird relapses after I did exert myself. My breathing was amazing. It’s insane that this is working.”

Most long haulers say they have had to get creative with sourcing the medication they’ve been recommended, as GPs are cautious. While some have managed to get the suggested SSRI from their GP after exaggerating their mental health symptoms, it’s a struggle to procure the other drugs through the usual channels in England.  

Many long haulers say that they have sourced medications within two weeks from a Hong Kong based supplier. Some have also resorted to creating forged prescriptions, using an online template, a made up doctor and an AI-generated signature. 

Others have taken a more unconventional route to get medication. Laura, a single mother with an existing diagnosis of MS, says she is desperate to be able to look after her children again. After reading on a Facebook group about another woman’s success of using an anti-parasitic drug in paste form, formulated for animal use only, she decided to order her own out of sheer desperation. 

“[The woman from the Facebook group] said in order to do that you need to invent some horses and come up with a worming plan. I had to say what type and what they weighed. In the post, a few days later, the horse paste came,” she explains. 

Although Laura hasn’t taken the animal paste, she is tempted. “I was really hesitant. I can’t go to a normal doctor and say, ‘I've got horse paste, how do I take it?’” she says. “I spoke to Patterson and he said he knows that people have had side effects with the animal paste, and I need to get the human stuff. But I still have the horse paste and I’ve been tempted so much to just take it. The only thing that has stopped me is the fact I have MS and I’m not sure whether it would make it worse.”

There are other huge barriers when it comes to attempting to treat yourself without the help of a doctor.

For one, it’s expensive, as Ku discovered when she was given a quote of £250 per pill (she had requested 14) from a travel clinic. Harry has spent at least £1,000 on supplements and medication since the start of his battle with long COVID. Along with costly supplements, Laura has tried alternative treatments, like reiki, enlisting the help of a nutritionist and seeing an osteopath weekly. “I’ve put every penny I have into trying to get better,” she says. 

On top of the money spent on recovery, information about the different medications they’ve been recommended are not always easily accessible. Harry says he spent days going through wordy, technical medical studies – with brain fog – in an attempt to make sense of the way the drugs work, as well as the effects long COVID is having on their bodies. 

As we wait for the courier to arrive to collect the blood samples, it’s clear that these long haulers believe the results could be life changing. That they might allow them to return to looking after their children, and finally think about going back to work or meeting up with friends. 

For now, though, the only definite is the long haulers’ ability to find some sense of community in the other people here today – strangers who can truly empathise with them.

The group sits on the pavement outside Harry’s house, listening to each other’s stories and talking about setting up a WhatsApp group to continue talking. But most importantly, they say, they’re grateful to find some support from others who understand what they’re going through. 

@nanasbaah / @liam.hart