Growing group of COVID-19 long-haulers warrant more coverage — and sensitivity

When Fiona Lowenstein, a 26-year-old with no preexisting conditions, got hospitalized with COVID-19 in March, she thought she’d recover quickly.

Instead, her symptoms stretched on for months, putting her in a category of patients referred to as long-haulers. As a journalist, Lowenstein searched for stories that mirrored her experience. She ended up co-founding an online COVID-19 support group to bring together a growing patient community and raise awareness of an often-dismissed group.  

“It’s a virus that can impact every system of the body and I think for long-haulers, it ends up impacting every aspect of life,” she said. 

Lowenstein, also a consultant and speaker based in New York City, joined researcher and cardiologist Dr. Haider Warraich and David Tuller, a senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health, to discuss what we know so far about the COVID-19 long haulers and how to best report and tell these stories in a recent “Covering Coronavirus” webinar.

Overcoming prior skepticism

After contracting an infectious virus, it’s not uncommon to experience a post-viral syndrome, including fatigue and muscle aches, Tuller said.  Usually, these symptoms resolve on their own over time.

The reason we’re hearing more about COVID-19 long-haulers has to do with the number of people experiencing over a short span of time and the fact that the virus impacts so many different organs, leading to a wide range of symptoms.

But despite the large numbers of patients, inadequate U.S. testing is exacerbating research — and credibility — challenges.  Scientists and physicians want to confirm a patient tested positive before studying their long-haul symptoms. But many people did not get tested or got tested after the active infection and received a negative result. The antibody test can also be unreliable, he said.

That doesn’t mean their symptoms aren’t real, Tuller said. “Patients aren’t making this up.”

In general, there’s been a lot of skepticism in the medical community about post-viral syndromes in part because the symptoms tend to be nonspecific. That makes it easy for the medical community to falsely dismiss patients as having anxiety or being a “hysterical women,” he said, which has happened with patients experiencing conditions such as myalgic encephalomyelitis (ME) or chronic fatigue syndrome.

Amid the pandemic, though, he has noticed journalists taking these cases seriously, perhaps because they know someone or have experienced this themselves.  Tuller said he hopes that awareness will have a broader societal impact, translating into other neglected post-viral illnesses, such as ME.

Lingering heart problems

Warraich, a cardiologist at the Veterans Affairs Boston Healthcare System, Brigham and Women’s Hospital and Harvard Medical School, described an example of one post-COVID-19 symptom that has garnered lots of media attention: heart injury and inflammation.

Warraich described an otherwise healthy COVID-19 patient in his early 50s who developed heart failure after he had recovered from his initial infection and started his life again. More than a month after the first bout, he got sick again – with his legs swelling – and now may need a heart transplant.

“This is a really dramatic example of just how far and wide the impact of COVID-19 can be beyond just the lungs,” he said.

The medical community is learning more about myocarditis, or heart inflammation, but research in the United States is still lagging. That’s a missed opportunity to not only understand this disease, but also the long-term impact of illness.  

Among the still unanswered questions: How does one’s initial infection impact the overall course? Even patients who didn’t have a severe case of COVID-19 are developing this post-viral syndrome.  Another missing piece is a good comparison group — such as studies on the lingering impacts of the common cold or influenza on the body.

The appetite for more knowledge is so strong that there is a rush to produce research, leading to even well-vetted studies needing corrections. Warraich advised reporters to go beyond the primary researchers in their interviews, seeking out other folks who might be expressing their questions and concerns on social media such as Twitter. It was on Twitter that serious questions were first raised about a widely cited study from Germany on COVID-19’s impacts on the heart, he added.

When writing your article, be up front about the study’s limitations, and don’t just parrot talking points. To find other sources, try reaching out to the authors of studies referenced in the paper’s introductory summary.

Covering long-haulers

For Lowenstein, she has gained a deeper appreciation of the long term social, emotional and financial impacts of the illness through the support group she helped organize. For example, one patient she interviewed can’t cook for herself because she struggles to sustain focus for more than a few minutes.

Many of these patients aren’t eligible for disability benefits and employers are skeptical of their experiences. Journalists can help raise awareness of their plight.

Lots of people are talking openly about their struggles in online forums such as Twitter, said Lowenstein, who also runs an online support group and has also connected journalists with long-hauler patients.

In interviewing long-haulers, it’s important to be sensitive. Some might be too fatigued for a long interview and others with hoarse voices or coughs might prefer to text or email. Those suffering from brain fog may appreciate questions in advance. Often, long-haulers need to carefully pace their days to manage limited energy.

When covering patients’ stories, language matters. Be careful with words like “recover” and “survivor,” terms that can frustrate patients as they continue to face the disease’s lingering impact.

She also encouraged journalists to include a diverse range of people in their coverage, including those who haven’t tested positive for COVID-19. Given the country’s inadequate testing history, it’s quite likely someone might be a long-hauler but wasn’t able to get tested. Others might have been fearful of getting tested.

Those are still stories worth telling. As Lowenstein put it: “It’s hard to diagnose COVID, this is the patient’s experience and … this is the context for why it’s that complicated.”

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Watch the full presentation here: