On March 21, 2021, Darren Brown marked 365 days since he first contracted Covid-19. He experienced all the classic symptoms of the illness: shortness of breath, fever, pain, fatigue, loss of smell and taste. After three days, he began to recover, and after ten, he returned to his job as a physiotherapist working with people living with HIV. He had a few persisting symptoms – fatigue, a little shortness of breath – but nothing he couldn’t manage.
Then, in September, he crashed. “I ended up being bed-bound, I couldn’t function.” It took him four months, with a two month break from work, to recover from that relapse, to feel like he had slowly gained back enough strength to go from being bed bound to flat bound, to walking with a walking stick, yet he is still not back working full-time. Brown’s symptoms stretched into a new condition called long Covid, thought to affect around one in ten people who receive a positive Covid-19 test, taking the form of a long-lasting, often debilitating condition in which symptoms persist many weeks after the initial infection.
Since he is a frontline healthcare worker, Brown received his first vaccine dose in January. In the run-up to his jab, he was excited, but also uncertainty. He had no idea if it would worsen his long Covid. And since he was amongst the first in the UK to receive the vaccine, nobody else knew either.
For the first week, his symptoms worsened. “I felt like I was going back a few steps,” he says. But after about three weeks he began to feel better. Brown describes it as like a cloud lifting; a colleague remarked one day that it was like he had returned to his old self. He waited for the symptoms to return but they never did. He received his second jab on March 18, and has since had some days totally symptom-free, but the fatigue has returned on others.
Brown’s story isn’t unusual. Around the world, many members of the long Covid community are reporting a remarkable improvement after receiving the vaccine. Although there is no definitive data on how many are experiencing this, informal surveys report up to 30 per cent of long-haulers whose symptoms have improved following vaccination. The majority report feeling the same, with fewer reporting a worsening of symptoms after receiving the vaccine.
Many long-haulers had initially expressed apprehension about the vaccine, for fear it would exacerbate their condition. But the opposite appears to be the case for some. Figuring out why could be the key to finally understanding what causes the mysterious ailment, once and for all.
Around the same time that Brown received his vaccine, Daniel Griffin, a physician and infectious disease specialist at Columbia University in New York, began to see something similar happening in his long Covid patients. He made a point of scheduling appointments with them two weeks after their jab to check in on how they were doing. And to his surprise, many of them – about a third – had had a big improvement. And none of them experienced worsening symptoms.
In late January, Griffin reached out on Twitter: “I have now heard from several people with Long COVID who feel significantly improved after getting vaccinated. Would love to hear from more people with Long COVID about their experience with vaccination.” The response was meagre and mixed: some said yes, some no. He repeated the call a few weeks later, this time posing the question to Akiko Iwasaki, a professor of epidemiology and immunobiology at Yale University, to see if she had any theories on why this was happening.
Iwasaki is one of the leading researchers investigating the puzzling phenomenon that is long Covid. She has three theories that could explain what is happening in the bodies of long Covid sufferers, and how the vaccine might be alleviating the persisting symptoms the condition causes.
Firstly it may be that there is a viral reservoir somewhere in the body where the virus is replicating but it can’t be located because it is inaccessible by nasal swabs. The vaccines may be stimulating T cells and antibodies that then eliminate that viral reservoir. Secondly, Iwasaki suggests, the persisting symptoms could be attributed to some remnants of the virus hiding somewhere in the body, causing a similar kind of inflammatory response – like a viral ghost. Vaccine-induced immunity may wipe out the viral ghost. Finally, long Covid could be chalked up to an autoimmune response induced by the infection, in which T cells or B cells, or both, are reacting out of place, and the vaccine may be diverting these cells.
It may also be that the vaccine is stimulating the innate immune response, and the short-lasting inflammation that causes could be diverting the immune cells causing long Covid. “I haven’t ruled in or ruled out any of those possibilities yet, because I think the data [are] too early,” she says. “These numbers are still very small. So even though it’s statistically significant, we need to see if this holds up in a larger scale study.” She emphasises that these theories are not mutually exclusive, so diagnosing what people have, and then giving them the appropriate treatment, will be key going forward. “We cannot treat long Covid as one disease, because they may be driven by different things.”
Despite the growing number of long-haulers telling their stories of a post-vaccination recovery, concrete evidence is still lacking. And anecdotal evidence based on personal observations or opinions – doesn’t prove what’s really going on.
This occurred to Fergus Hamilton, an infectious disease researcher at the University of Bristol, when he was contacted by someone with long Covid who was worried about receiving the vaccine. There was no scientific literature to send her as reassurance, so he decided to study it himself. In a recent preprint study, Hamilton and his team contacted people who had been hospitalised with Covid-19 eight months ago and who had received the vaccine a month earlier. They found 23.2 per cent of the vaccinated patients had their symptoms improve (compared to 15.5 per cent of those who were unvaccinated). 5.6 per cent of the vaccinated patients had their symptoms worsen, compared to 14.2 per cent of the unvaccinated. The majority of symptoms (around 70 per cent) remained unchanged in both unvaccinated and vaccinated.
A limitation of the study, which Hamilton recognises, is that symptom recall in the participants may be influenced by having received vaccination. But the biggest takeaway from the study, he says, is that the vaccine is safe, and that people with long Covid shouldn’t worry about getting it. Another merit of the study, Iwasaki says, is that the researchers waited until one month post-vaccine before surveying the participants, which prevented people who experienced side effects from muddling up the results. “If you start surveying people the day of the vaccine or after one week, everyone will feel bad,” says Iwasaki.
According to Griffin, the placebo effect is unlikely to be at play, as he points out that many of his patients were dreading receiving the vaccine lest it worsened their symptoms and they experienced the opposite. In addition, some have reported regaining their sense of smell, an outcome that would be “difficult to attribute to a placebo effect”.
Diana Berrent, the founder of Survivor Corps, a support group for long-haulers and herself a sufferer of long Covid, began to hear similar rumblings within the community, which has over 150,000 members. She posted a poll in the Facebook group. So far, over 750 people have voted. Over 40 per cent of the respondents said they had noticed improvements in their condition after vaccination. 45 per cent reported remaining the same post-vaccination, and 14 per cent said their symptoms were worse post-vaccination.
Berrent is quick to point out that she’s aware it’s not the most robust evidence. “Is this science that you can take to the bank? Of course not – it’s a Facebook poll.” But the significant percentage does point to something notable. She took the data to Iwasaki, who now has an application for federal funding for a study to test the response in long Covid patients by analysing the immune response before and after the vaccination. Berrent believes that the long Covid community has redefined citizen science. “We were able to take information from a patient population, survey that number of people overnight, get that data to the scientists who are working on that very issue, and have a formal study designed within 24 hours.” Every day, she reruns the poll, and sends the new numbers to Iwasaki.
Until solid evidence shows this to be scientifically true, these reports must be taken with a hefty pinch of salt. Especially considering it seems to be occurring in the minority of long-haulers, and some do report that their symptoms worsen after being vaccinated.
Brown grows emotional at the thought that a degree of respite could be in sight for some long-haulers. “To think that there could be something that takes away the difficulty, the emotional pain, the disability that is being experienced by so many people around the world – that would just be unreal,” he says. But he adds that any celebration should be accompanied by a sense of caution too – a mindfulness not to leave behind the thousands of long Covid sufferers who won’t improve after vaccination. “Just because I’ve had a relatively positive experience, it doesn’t mean that others will as well.”
Regardless, for some people with long Covid, vaccination offers a sliver of optimism after a year of despair. “This was the first bright moment, the first good news story we’ve had since I started Survivor Corps a year ago,” says Berrent. “The fact that we’re having all of these people say it at once is remarkable, and it offers tremendous hope.”
Grace Browne is a science writer at WIRED. She tweets from @gracefbrowne
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