Last New Year’s Eve, Patrick* confided to Daniel* that he felt too ill to go out to dinner. 2020 brought fever and the loss of two senses, taste and smell. Daniel soon succumbed to the virus, but his symptoms were milder and his recovery swift. Patrick continued to decline. “I remember very clearly the day I said ‘I think it’s probably time you rang the doctor’,” Daniel says.
A few miles away, I watched Andy with deepening concern. By January 18th, Daniel and I would both conclude that our husbands needed urgent medical attention, though the only symptom shared by Patrick and Andy was a high temperature. If, as now seems possible, Patrick and Andy were suffering from the same disease, the implications extend far beyond our two London households.
Patrick complained that January weekend of a fresh symptom, peripheral neuropathy, pins-and-needles. Then one side of his face froze. Doctors retreated from an initial diagnosis of Bell’s Palsy after the paralysis spread to the other side of his face, accompanied by an acute inflammation to the back of the head. A second diagnosis followed: Guillain-Barré syndrome, a rare and serious condition that sometimes proves fatal. Patrick, admitted to hospital, would not go home until the end of January.
Andy, increasingly listless since December, by mid-January had lost his appetite. On January 18th, I looked at him and rang an ambulance. His fever turned out to be dangerously high, his oxygenation dangerously low. Sepsis, said the paramedic. Doctors at St Thomas’s identified pneumonia and then a specific strain, PJP. This raised hopes of a quick recovery, since drugs could be carefully targeted, but instead Andy’s body began to fail, vital organ by vital organ. As Patrick prepared for release from hospital, St Thomas’s staff conferred with me about releasing my beloved from life support. They disconnected the machines on February 1st. Andy died 12 minutes later.
Andy didn’t know Patrick, nor had their paths crossed, in December or at any time. I learned of Patrick’s ordeal only after I published a blog post about Andy’s death and spoke to the Guardian and the BBC’s Coronavirus Newscast about the possibility, now under consideration by St Thomas’s, that Andy might have contracted Covid-19 when his band toured China in November or after his return to the UK.
My public interventions unleashed a flood of messages from people who believe that Covid-19 reached the UK well before 31 January, the date of the first cases confirmed by the authorities. They tell stories of sudden illnesses that in some cases, such as Andy’s, displayed the palette of symptoms originally identified as markers of the disease, in others, like Patrick’s, manifested in ways more recently associated with Covid, including the loss of taste and smell and Guillain-Barré. A woman called Debra Scott alerted me to her detailed Facebook account of an illness she dates to a school reunion on November 21st. Research scientists and medical professionals have contacted me too with evidence pointing to Covid taking hold substantially earlier than official narratives admit. “We all knew something was going on,” says a GP. “We had meetings in the practice about it back in December.”
The problem with most of these accounts is that they are circumstantial and anecdotal. Even Debra, whose account is compelling and who tested positive for antibodies, cannot offer incontrovertible proof that her coronavirus infection predated those first official UK cases. Further investigation of Patrick and Andy, by contrast, might be able to offer such proof. The hospitals still hold samples taken from them in January. Patrick has separately already tested positive for antibodies. The test, conducted in May by a researcher at a London teaching hospital, indicated not only that he had contracted Covid-19, but suggested, because of the time that elapsed before the test reacted, that the antibodies had been in his system for a considerable time. If his January samples are retested—and there is currently no plan for this, but there should be—a positive result would indicate that the virus reached London before the turn of the year. Andy’s samples from the same period—and it is also not clear at this point whether they will be tested, though, again, I hope they will be—may show the presence of antibodies. Since Andy had been ill for weeks before admission, what ultimately killed him might have been not have been the virus but an inflammatory response to the virus.
Establishing the wider timeline of the virus is essential, and not just in understanding the decision-making process that in delaying the UK lockdown may have doubled its death toll. Any current and future strategies to quell the outbreak and ease measures that in protecting lives are destroying livelihoods will be effective only if based on good data. Epidemiological models fed, like pigs, on slop produce predictably sloppy results that have nevertheless been seized on by a government seeking not so much to follow science as to provide cover for political decisions. If Covid-19 circulated unchecked in December or even earlier, this suggests that the disease behaves differently to the way modellers assume, not least in its transmission rates and in the numbers of those who are infected but asymptomatic.
A “world-beating” system of track and trace—or even a decent one—deployed as soon as the health authorities confirmed the presence of the disease in the UK population and maintained throughout the crisis would have quickly yielded information on its spread and evolution. The implementation of such a system, long overdue and sadly far from the reality of the improvised version bodged together by the government, could help the UK better to navigate the emergence from lockdown and to monitor for any resurgence of the disease.
This is not to suggest that the tests for antigens (active virus) and antibodies are infallible, even if press and politicians routinely talk them up. The Telegraph, for example, reported that Public Health England had “confirmed Roche’s claim that its [antibody] test is accurate in 100 per cent of cases,” garnishing the piece with quote from a government source declaring, avidly: “We want to get our hands on as many of these as possible.” This report, like many others, confuses sensitivity (the percentage who test positive from all those tested who are positive) and specificity (the percentage who test negative, from those tested who actually are negative) with accuracy—the percentage of people accurately diagnosed by the test.
The good news is that both antigen and antibody tests tend to fail in the same way—they are much more likely to return false negatives than false positives. Failures are caused if the test is administered incorrectly and for other reasons. Antigen tests are most likely to be accurate within three days of symptoms appearing; often the tests take too long to arrive. Antibody tests on patients known to have contracted Covid-19 and administered by trained staff sometimes also produce false negatives. This raises the possibility that not all patients seroconvert—respond by creating antibodies.
Nick Gay, Professor of Molecular and Cellular Biochemistry and Wellcome Trust Senior Investigator at the University of Cambridge, explains why this might be and the implication of that finding: “A positive test is a good indicator of a past infection but a negative one is pretty meaningless. This is because in mild or moderate cases the dominant immune response is what we term T-helper 1, mediated by CD8+ T-cells that recognise and kill infected cells, but they do not produce circulating antibodies and likely not long-lived memory cells that will protect against second infections. This is why the development of a vaccine is very uncertain and is not the panacea some media make it out to be.”
Nick got in touch after reading about Andy. They had known each other at Leeds University in the late 1970s, “a time,” he writes, “of great energy, passion and creativity”. He signed off his first email to me with a quote from Albert Camus’ The Plague: “Everybody knows that pestilences have a way of recurring in the world, yet somehow we find it hard to believe in ones that crash down on our heads from a blue sky. There have been as many plagues as wars in history, yet always plagues and wars take people equally by surprise.”
That Covid-19, as a new virus, benefited from some element of surprise was inevitable. It was given more of a head start by governments concealing its initial spread, as China did, and fumbling their response, as the UK, US and Brazil have done. It should not continue to enjoy that advantage.
Nothing I do will bring back Andy, but I hope in collecting case studies, advocating for testing of old samples held by hospitals and pushing for a better track and trace regime to help protect other lives.
* Patrick and Daniel are pseudonyms. They do not wish to be identified in the media but are more than willing to participate in medical research into the timelines of Covid-19.
©Catherine Mayer 2020
Listen here to Forever Starts Now, co-written by Andy and Gang of Four singer John Sterry and released as the first single from the forthcoming EP ANTI HERO. All proceeds to Guy's and St Thomas' NHS Foundation Trust. Portrait of Andy by Shepard Fairey / Obey Giant.