On Wednesday, the New York Times – and others – published what appeared to be good news. “Omicron infections seem to be milder, three research teams report” read the headline. Many readers must have been relieved to see this news, especially with cases sky-rocketing even as the holiday season is in full swing.
As someone living with post-viral conditions exacerbated by Long Covid, I read the story carefully. I noted the preliminary nature of the data from South Africa, Scotland and England, and the prediction that the greater infectiousness of Omicron would still likely land many people in hospitals already strained to capacity.
But despite these caveats, I felt little relief or reassurance after reading the article. It contained no mention at all of Long Covid. Not one. This is not a benign oversight; it’s a fundamental and dangerous misread of our global predicament and the future that awaits us.
We’ve still got a lot to learn about Covid-19, including this new variant. But one thing we know for certain is that “mild Covid” can be debilitating and lead to long-term or permanent disease and disability.
We now know that at least 10-30% of those who survive any Covid infection (from asymptomatic or “mild”to severe) will go on to live with (and sometimes die from) long Covid – a long-term, lifelong, or even life-threatening or fatal, disabling chronic syndrome, the biological pathways of which are still largely unknown.
Even before Omicron, the CDC estimates there have been at least 146.6m Covid infections in the United States alone – meaning at least 15 million people are estimated to have long Covid.
And now, many formerly healthy people who now have long Covid face the Omicron wave made more vulnerable by conditions known to greatly increase risk of severe or fatal Covid – including long Covid-associated diabetes, strokes and lung disease.
As Omicron entered the news in November, early reports from South Africa noted that many cases were mild. In some ways, this was utterly predictable – the nation has a relatively young population, and more severe disease often takes several weeks to develop.
But the rapid dissemination of this speculation was not politically neutral. And the potential consequences are not mild at all.
The “mild” theme was quickly picked up by leaders who have vowed to never repeat the lockdowns and other restrictions of previous waves. A faster-spreading strain in the lead-up to a holiday travel season in many areas of the world would have drastic economic implications.
It also was an opportunity for dog whistles on “herd immunity”, the bot-fueled and misguided notion embraced by some of the same forces promoting climate science denial: that preventing Covid-19 spread would become unnecessary or even harmful by delaying natural immunity or the evolution of a truly globally insignificant dominant strain.
But Omicron, less resistant to vaccines and natural immunity, is driving a huge global wave of infection. Thus, even if there’s a higher percentage of mild cases, we expect a terrible toll in mortality and strained health systems. One individual infection can rapidly spiral into a multi-generational tragedy, multiplied on a world scale. Any one young person’s mild infection this Christmas could rapidly become their grandparent’s demise.
And few reports on Omicron even mentioned long Covid as a concern. If we were in the early, terrifying days of 2020, perhaps we could forgive the beleaguered general public and frazzled world leaders for not also referencing long Covid as a terrible consequence of a Covid surge.
After all, those of us living with post-viral conditions – such as ME/CFS, dysautonomia, postural orthostatic tachycardia syndrome (Pots) – are used to being ignored, disbelieved, or misadvised. We were on few radars before Covid; even now, the National Institutes of Health (NIH)‘s Recover Initiative on Long Covid has all but ignored post-viral researchers and sidelined patient advocates.
But it’s been abundantly clear for more than a year that even asymptomatic infection brings a significant risk of long Covid – a wide spectrum of more than 200 symptoms and conditions that can appear months after initial infection or apparent recovery, and leave children, adults and elders disabled, chronically ill and desperate for medical care, income, housing or even recognition that their suffering is from real physical conditions.
On 15 December, South Africa’s Dr Salim Abdool Karim, who co-authored Omicron SARS-CoV-2 variant: a new chapter in the COVID-19 pandemic in the Lancet, told a global Zoom audience:
“I have no idea what’s in store for us as far as long Covid is concerned … It’s a really important question, and it’s particularly so because Omicron is spreading so fast and so widely so quickly – the number of people getting infected is so big that … if it’s a common consequence of even mild infection, you can imagine, even if in 10% of people, there’s going to be a lot of people with long Covid. It’s certainly something we want to keep a beady eye out on.”
As comrades in a terrible journey, people with post-viral conditions have shared all we have learned with people with long Covid – like the importance of resting and pacing instead of pushing through ME/CFS fatigue, and the jarring reality that ME/CFS has the lowest amount of NIH research funding relative to the burden of disease in the population.
We now shudder to think that more will be joining our ranks. There is nothing mild about the massive wave of loss and suffering washing over our world. As a global community, we parrot phrases such as “the majority of cases are mild” at our peril.
We’ve already lost too many lives from the false hope that Covid-19 will become more mild or subside. We’ve gone months without significant investments in indoor ventilation, distribution of effective masks and global vaccine access. We need sustained systems of benefits, housing security and basic income support for avoiding Covid infection or dealing with post-viral illness.
It’s time to choose our words, and our policies, much more carefully. Let it begin by including analysis of long Covid and post-viral illness in any reporting, speculation or policies, starting with this Omicron wave.
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JD Davids, a health justice strategist working with networks of disabled and chronically ill people, including people living with HIV, long Covid and ME/CFS, is the lead author of Chronic Injustice: Centering Equitable Health Care and Policies for COVID-19 and Other Chronic Conditions. He has served as an external expert advisor to the NIH and CDC, is a contributing member of the Patient-Led Research Collaborative, and is the founder of Strategies for High Impact (S4HI)