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10 February 2021updated 04 Sep 2021 2:13pm

Covid-19’s “Doctor Data” Tim Spector on new symptoms, official inertia – and switching off No 10 press briefings

The epidemiologist behind the Covid Symptom Study app reflects on the challenges of marrying real-time science with the priorities of government.

By Anoosh Chakelian

Every morning, Tim Spector opens his email inbox to find it filled with photos of tongues. This could be a disconcerting start to a day’s work, but the epidemiologist – who started out as a junior doctor – doesn’t mind. He posts them to his Twitter feed, where they often receive hundreds of retweets.

“Geographic tongue” (the patchy surface can resemble a map) is one of many less common symptoms Spector has found to be associated with Covid-19. He has also seen “Covid toe” (like chilblains), unusual mouth ulcers and skin rashes.

Spector, the head of genetic epidemiology at King’s College London, has become Covid-19’s Doctor Data. On 24 March 2020, the day after the first lockdown was enforced, the health start-up Zoe (of which Spector is a founder), launched the Covid Symptom Study app. It now has 4.5 million users, who can update their symptoms (or lack of) every day, request Covid-19 tests and log their vaccinations.

It’s a rich set of data. The app detected confusion and delirium among Covid cases in the elderly, now a symptom recognised for such patients in Public Health England guidance, and has also found children tend not to present the respiratory symptoms that afflict adults (though this has yet to be accepted officially).

This app was also the first to track the symptoms and characteristics of Long Covid sufferers, as well as to identify geographic “hot spots”, as it did with Leicester, shortly before the government imposed a local lockdown there last June.

User data identified a loss of taste and smell as a symptom at the start of April, before it was officially listed as such. It took Public Health England until May to recognise the symptom – a delay, Spector warned, “we’ll look back on and regret”.

“We’ve always tried to encourage large numbers of symptoms to be reported and this has always been our point of contention with Public Health England, which is still sticking to the three symptoms, whereas most countries have moved to be much broader,” he said.

“Clearly, they’re missing lots of cases, and it seems to me daft to be doing lots of screening of asymptomatic people while they’re missing perhaps up to a third of people who are unwell and aren’t allowed to have a test without the classic symptoms.”

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This is what Spector – who caught Covid-19 himself in March last year – described as his “constant fight”. By recognising other symptoms, we could catch more cases earlier: “There’s still a feeling in the government that if they didn’t invent it, they don’t believe it.”

[see also: Why Boris Johnson can’t claim to have “followed the science” on Covid-19]

Speaking from his home office in north London, the 62-year-old professor looked relaxed in a grey Zoe-branded hoodie and white T-shirt – with the same dusting of stubble and lean appearance that audiences may recognise from TV and social media over the past year.

Spector had the idea for the app as he was cycling home from work, on the day his university closed when coronavirus was first spreading. A veteran of studying mass cohorts of people, he founded the UK’s largest database of twins, in 1992, to study genetics, and has been running the world’s biggest nutritional study via app-collected data. His focus on how gut microbes shape us led to his popular science books The Diet Myth (2015) and Spoon-Fed (2020).

It took until the end of July last year for the Department of Health to begin funding the app, and “a lot of people tried to shut us down, including the medical establishment”, Spector revealed. “There was a lot of institutional pressure, which came down from the NHS and Public Health England and these bodies through politicians and others, and the word was, ‘Don’t work with these guys.’”

Yet the government’s own Covid-19 app ended up chronically delayed and watered down into an add-on to the trace and trace system when it finally arrived, long after it was promised.

Spector believed his idea would “survive for two weeks and then fizzle out”. Now, his team regularly updates the government, alongside the other two major real-time studies of the UK’s epidemic from the Office for National Statistics survey and Imperial College London’s React study.

“Occasionally, we show different things,” Spector said. As a recent example, on 21 January Imperial reported cases were not falling and were possibly even rising. A day later, the Covid Symptom Study app said cases had halved in two weeks, having peaked on 1 January. (According to a government press briefing that same day, cases were, in fact, falling.)

The app also suggests the Kent variant of the virus is around 35 per cent more transmissible than the old version – different from Boris Johnson’s announcement at a No 10 press briefing that the figure may be up to 70 per cent. It finds no evidence that the new variant causes more severe illness; the Prime Minister has said at another press briefing there was “some evidence” it is more deadly.

“I think they did want people to be scared by it so they would abide by the new lockdown,” Spector said. “You’ve got the government, their press releases, the NHS stuff, but we give it to you straight. And sometimes that causes problems because it doesn’t fit with the government message.”

Spector has stopped watching the government press conferences because such disparities began to “annoy” him. He would also like to see deaths from other causes – including cancer and heart disease, for which treatments may be missed during lockdown – included in the daily case and fatality reports. “I wish that we could in those dashboards include those people who die who don’t get any sympathy,” he said.

“We and politicians and the media have become over-focused on the deaths from Covid,” he added. “When we do the final reckoning of this, I think we’ll have a different view. If you take a holistic view, I think we will look back on this period and realise how it’s very hard for humans to react beyond immediate risk.”

“Spoon-Fed: Why Almost Everything We’ve Been Told About Food is Wrong” by Tim Spector is published by Cape (£12.99)

[see also: Inside the creation of NHS England’s Your Covid Recovery service for long-term symptoms]

This article appears in the 10 Feb 2021 issue of the New Statesman, End of the affair