What needs to be done to address ‘long COVID’?

“The 360” shows you diverse perspectives on the day’s top stories and debates.

What’s happening

Whenever COVID-19 cases start to rise, as they are doing right now, the focus is understandably on the acute crisis of hospitalizations and deaths that quickly follow. But health experts are also increasingly concerned about the long-term effects of these surges, which can leave people with lingering — and sometimes debilitating — symptoms for months or years after their initial infection.

Most people who get COVID recover fully within a few weeks, but some end up with what’s commonly known as “long COVID.” Also known as post-COVID syndrome, long COVID is characterized by a varying collection of symptoms that include everything from chronic fatigue, shortness of breath and difficulty concentrating to coughing, joint pain and even muscle tremors.

Very little is known about long COVID, including its cause and what, if anything, might cure it. Scientists also aren’t certain what percentage of COVID patients end up with long-term symptoms. Estimates from studies range from about 10 percent all the way to 50 percent. With more than 60 million total confirmed cases in the U.S., even the low end of that spectrum would mean millions of Americans are affected. According to the American Academy of Physical Medicine and Rehabilitation, an estimated 17.7 million Americans are dealing with long COVID.

COVID “long-haulers” struggled to have their symptoms taken seriously in the early months of the pandemic. But the collective efforts of long COVID patients — many of whom have endured major personal and financial challenges — have helped push the medical community to gradually recognize it as a distinct and serious medical condition. The federal government has put billions into studying long COVID and recognized it as a potential cause of disability. The World Health Organization also released an official definition in October.

Why there’s debate

The ultimate goal, of course, is a cure or an effective treatment for long COVID, but scientific understanding of the condition is still in its early stages. Health experts and long-haulers themselves say there’s a lot that can be done right now to ease the burden of long COVID on individuals and society as a whole.

The first step is simple recognition. Many long-haulers say the unpredictable and varied symptoms of long COVID can make it difficult to convince people — even doctors — that their condition is real, which only increases their burden. A positive step, some argue, would be for the media and lawmakers to acknowledge long COVID when they discuss the risks of the coronavirus, rather than focusing only on hospitalizations and deaths.

There are also structural changes that could make a major difference. Public health experts say not nearly enough is being done to help people whose lives have been derailed by long COVID or to create systems needed to support long-haulers in their careers, educations and at-home lives.

What’s next

There are still a lot of questions about what the current surge in cases will mean for long COVID, including whether the Omicron variant is more or less likely to cause it and how much vaccinations and boosters affect its prevalence. Those answers likely won’t be clear for several weeks or months.

Perspectives

Long COVID sufferers deserve compassion and understanding

“It was incredibly difficult because we were not believed. It’s one thing to have the physical pain, but it’s another to have those pains dismissed because someone has made up their mind that that’s not real, that that’s not attributed to Covid. That hurt worse.” — Lauren Nichols, patient advocate, to Stat

Long COVID should be part of every discussion about the risks of the pandemic

“People seem to think COVID-19 is a binary — you either die or you get better. (You might even be lucky enough to get better after being asymptomatic.) But there’s actually a third path, which is long COVID. You don’t die, but you don’t get better, either, and are left with debilitating symptoms that might be permanent. And no one is sounding the alarm about the risk of disability from ‘mild’ cases of COVID.” — Effie Seiberg, San Francisco Chronicle

We can’t solve long COVID without putting more resources into studying it

“One of the dilemmas with any treatment, whether you’re talking about long COVID or acute COVID or any other condition, for that matter, is that the general clinical fraternity only believes data that comes from clinical trials. And currently, there is no proper clinical trials that is focused on long COVID. … For that to happen, obviously we need funds, and we need very big infrastructure to be able to do clinical trials.” — Resia Pretorius, long COVID researcher, to NPR

The government needs to establish an infrastructure to support long-haulers

“Policy makers and planners must anticipate and prepare for the impact of this new cause of disability, including its implications for federal and private worker’s compensation and disability insurance programs and support services.” — Claire Pomeroy, Scientific American

Limiting the burden of long COVID starts with reducing the number of people who get it

“We must continue to take steps that will keep cases low so that globally, we can limit the number of people who will have to live with Covid’s long-term, life-limiting symptoms.” — Tim Spector, CNN

The search for a cure can’t come at the expense of caring for people who are struggling right now

“What could matter more than the cause of these long Covid symptoms is determining how to properly care for those who suffer from them. A thoughtful approach to this problem could also help us improve care more generally after the pandemic.” — Adam Gaffney and Zackary Berger, New York Times

Long-haulers must be at the center of every plan to respond to long COVID

“Long-haulers were the ones who described, defined, and drew attention to their condition. … Now many feel that their expertise is being ignored and their hard-won knowledge is being excluded from investigations into their own illness. The message seems to be: Thanks for everything; academia can take it from here. This attitude is slowing down long-COVID research and skewing its focus.” — Ed Yong, Atlantic

This should draw attention to the ways the health care system leaves so many behind

“The pandemic has really taught us that there is a need for more flexibility, compassion and a universal design that will benefit not just those with disabilities but everyone, and my hope is that we retain some of that the things that were put in place to adapt to the pandemic.” — Amanda Kraus, disability resources coordinator, to NBC News

Urgency to solve long COVID should be extended to other chronic illnesses

“As millions of people nationwide are suffering from long-haul covid … an army of patient advocates are cautiously hopeful that new research may unlock clues to other conditions that appear to crop up after infections.” — Frances Stead Sellers, Washington Post

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Photo illustration: Yahoo News; photos: Getty Images