Does Long Covid really exist? Patients with debilitating symptoms are being treated like political pawns

Back in January, as Covid cases surged and deaths ticked up into the thousands per day, some friends and I made a website to rebut some of the arguments that were swirling around on social media by “Covid sceptics” — people who are sceptical about the virus’s effects (as opposed to its existence). For instance, in response to the common claim that “Covid has a 99.5% survival rate”, we pointed out that although the mortality rate seems low, it still means an awful lot of death if the disease spreads through a whole population. Not only that, but the death rate is a lot higher in older people.

One of the other arguments we made is: death isn’t the only thing that matters. Despite a huge focus on mortality statistics, and understandable fears about elderly relatives dying, even a non-deadly Covid infection is something worth avoiding. The symptoms themselves are often highly unpleasant, as is a stay in hospital if things deteriorate. And, as we wrote, there’s also a risk of “Long Covid”. We linked to a Chinese study from January 2021 showing that many people hospitalised for Covid tended, six months after being released from hospital, to have persistent symptoms: a majority of them reported fatigue or muscle weakness, for example, and almost a quarter reported anxiety or depression. This, surely, is reason enough to take Covid seriously.

In rhetorical terms, Long Covid seemed the perfect stick with which to beat the Covid Sceptics — it added extra weight to our case by bolstering the already scary death statistics, and was the perfect comeback to a breezy “let it spread” attitude. So perfect that I hesitated while typing it out. Could it be too good to be true?

Some would say we didn’t go far enough. Fatigue and mood problems are just the beginning of the incredibly long list of symptoms now attributed to Long Covid. A paper in Nature Medicine from March, which called the condition “Post-acute Covid-19 Syndrome”, provided a review of all the potential organs that Covid might damage in the long-term: the lungs, the heart, the kidneys, the brain — even the skin.

This week, The Guardian produced a series of articles about Long Covid, relating harrowing tales of people who never fully recovered from a Covid infection, experiencing pain, “brain fog”, irritable bowel syndrome, and a huge range of other disorders with no end in sight. “Sufferers of chronic pain”, The Guardian wrote, “have long been told it’s all in their head. We now know that’s not true”. They interviewed a range of immunologists and other scientists who suggested plausible ways that the coronavirus, for example via its effects on the immune system, could be having all these effects. The NHS has set up many clinics across the country that are specifically for Long Covid, suggesting that they believe it could become a very big problem.

But it really is true that some sources are telling Long Covid sufferers that it’s all in their head. In a Wall Street Journal piece in March, the psychiatrist Jeremy Devine described Long Covid as “largely an invention of vocal patient activist groups”. The US National Institutes for Health committing to fund research into Long Covid was, Devine wrote, “a victory for pseudoscience” which would “further perpetuate patient denial of mental illness and psychosomatic symptoms” (the Journal also published a response piece a few days later).

Devine made the connection between Long Covid and “Chronic Lyme Disease”. Chronic Lyme sounds a bit like Lyme Disease, the very real bacterial infection you can catch from a tick bite and that can cause genuinely horrible symptoms. But the medical consensus is that Chronic Lyme — which is said to produce a whole range of perhaps-familiar symptoms including fatigue, muscle pains, brain fog, and so on — doesn’t exist, or at least, there’s no good evidence that the symptoms are linked to a tick-borne infection. Regardless, a whole industry of quack clinics has grown up around Chronic Lyme, often bilking vulnerable patients — who’ve latched on to the diagnosis despite the lack of medical evidence — out of large amounts of money.

And indeed one of the strongest pieces of evidence for Devine’s link between Long Covid and Chronic Lyme is that, in at least some studies, a substantial proportion of those who identify as having Long Covid can’t actually prove they had a coronavirus infection to begin with.

Game over for Long Covid? Not necessarily: first of all, many Long Covid sufferers clearly have had an infection. And we all know that for long periods during the pandemic — particularly during the first wave — testing capacity was terrible, with vast numbers of people infected but not showing up in the numbers. It’s possible that the antibodies in their system faded over time.

Still, as the medical scientist Adam Gaffney has argued, it’s likely that some substantial proportion of people reporting Long Covid are actually people who’ve never had the virus. Which might help us understand why the numbers on Long Covid are so weird. Some sources argue that “10-30%” of people who have had a Covid infection go on to experience it — which is itself already quite a range. But look at a UK study released this week (which hasn’t yet been peer-reviewed and is in preprint form). The researchers — some of whom are colleagues of mine — were able to dig into electronic health records from the NHS, and produced a startling figure. Of the 1,199,812 people they found who’d had a positive test for Covid, been hospitalised for Covid or been otherwise diagnosed with Covid, just 3,327 had also reported Long Covid — that’s 0.27%, a different universe from the other numbers.

How do we reconcile these wildly varying prevalence estimates? Perhaps a large number of Long Covid sufferers didn’t report their condition to their doctor, so it never appeared on their NHS record (after all, patient advocates do report a lack of understanding from clinicians on this type of chronic condition). It’s also possible that a lot of people who’d never had Covid nonetheless reported Long Covid in the earlier surveys — but this would have to be a truly dramatic effect to explain the disparity.

It’s more likely that we’re talking about entirely different things: studies, surveys and reports in the media can define Long Covid in very different ways. You have patients who’d been hospitalised for a severe disease, which might be expected to knock anyone for six, weakening them in many ways for many months afterwards. You have those who continue to have observable problems with their lungs and other organs. And you have people, many of whom were never hospitalised and who had a much milder experience of Covid itself, reporting debilitating symptoms that are much harder to measure or explain.

Part of the confusion also has to do with the grab-bag “non-specificity” of the Long Covid symptoms: we know that fatigue, pain, and many of the other commonly-reported complaints can be caused by a whole range of other disorders, including psychosomatic ones or can appear in the absence of any known diagnosis. Medical science is notoriously bad at explaining, treating or even properly describing symptoms like fatigue and chronic pain. This is something we’ve struggled with for decades, much to the dismay of endless numbers of patients who often feel ignored and misunderstood by their doctors (scandals relating to a lack of transparency in trials of treatments for chronic pain don’t help). Advocates for Long Covid patients point to embarrassing mistakes made in the past, like Freud’s idea that “repressed erotic ideas” were the cause of some physical symptoms.

Most of all, maybe at this point we should simply expect confusion. Although we’re all completely sick of hearing about it, Covid is still a novel illness and we’re still gathering data on its effects, particularly in the long-term (the NHS-records study I mentioned above represents perhaps the best ever effort in this regard). Lumping together people with very different types of symptoms under the rubric of “Long Covid” isn’t ideal, but it’s perhaps understandable when we’re so early in getting our collective heads around the effects of the virus.

There’s a tendency on the part of those who want Covid to be taken more seriously to try to iron out the wrinkles of Long Covid, making it seem more clear-cut and well-understood than it really is. I felt the temptation myself as I drafted the anti-Covid-sceptic website — especially because the equal and opposite tendency also exists: there are those who want to put the symptoms entirely down to the psychological toll of lockdown in order to make the virus itself seem less dangerous.

Of course, the psychological toll of the pandemic is something that should concern us all — whether we blame or support lockdowns. This has been an undeniably gruelling experience for many. Gaffney points out that it’s “a period of prolonged social isolation with no obvious parallel in history,” and argues:

“We should expect a surge in both mental anguish and physical suffering that, while connected to the once-in-a-century pandemic, will not always be directly connected to SARS-COV-2 itself.”

Not always connected to the virus.

But Long Covid patients aren’t mere pawns in our debates over pandemic policy. They’re people with terribly debilitating symptoms who deserve far better from scientists than a fruitless — and oddly dualistic — debate about whether those symptoms can be put into the “physical” or the “psychological” box. They deserve careful, disinterested research. If we want to avoid research on Long Covid becoming unproductively political — which at present is a genuine risk — then both sides of the debate must prepare to discover surprises and contradictions that might not advance their own arguments. Scientific results, after all, tend not to hew conveniently to political beliefs.

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