Coronavirus patients across East Coast turn to social media group for answers, support

For more than a week, Bonnie Chwala felt like she was breathing fire. She had tested positive for the novel coronavirus, and her doctor said no drug could ease the burning sensation in her lungs.

With worsening pain, cough and shortness of breath, Chwala worried she might need the emergency room. Meanwhile, she reached out to a Facebook group for people with covid-19, the disease caused by the coronavirus.

"Has anyone found a relief for the intense burning in your lungs?" Chwala recently posted.

The responses flooded in: Try steaming in a hot shower. Lie on your stomach. Ask your doctor for the steroid prednisone or the asthma medication albuterol. Request an X-ray to check your lungs for pneumonia.

"It makes it a little easier to navigate what to do," said Chwala, a 39-year-old hairdresser in Denver. The steam didn't help, the stomach positioning did, and she reached out to her doctor to discuss the drugs and the X-ray. "It was comforting to have a plan," she said.

Survivor Corps, the two-month-old, 49,400-member Facebook group she consulted, is one of thousands of social media forums that have sprung up to discuss the coronavirus.

Sick at home, people are together puzzling through their confounding and variable illness, and crowdsourcing their treatment and decision-making.

"You're talking about people who are at the scariest point in their lives," said Diana Berrent, 45, a photographer and former lawyer who survived covid-19. She founded Survivor Corps to mobilize plasma donors. "They're home, they're alone, they're sick, they're scared, and they're generally not under much medical supervision."

They have become experts of sorts in something so novel that scientists and doctors are only beginning to understand its effects on the human body.

"The medical knowledge about this is evolving so fast," said Esther Freeman, a dermatologist-epidemiologist and an assistant professor at Harvard Medical School, who runs the international registry for dermatologic manifestations of covid-19. She first heard of a recently identified symptom, painful discoloration of the toe, in a Facebook discussion among doctors.

"The power of social media in this epidemic as a news source cannot be underestimated," she said.

» FAQ: Your coronavirus questions, answered.

For many Americans, it is also now unusually difficult to consult a doctor. Millions who recently lost their jobs also lost their health insurance and a salary to cover medical fees. Many doctors' offices are closed, and telehealth appointments can yield less information than a physical exam.

Of course, in the panicked, information-starved atmosphere of a pandemic, Facebook, Reddit, Twitter, Instagram and Slack may be especially susceptible to hoaxes, conspiracy theories and fake cures.

"There's no oversight or verification," said Athena Poppas, president of the American College of Cardiology. Other doctors said patients could best use social media to gather ideas to discuss with their doctors.

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Before the pandemic, more than 40 percent of Americans consulted the Internet for medical information. Yet sick people might have been less likely to rely on social media stories to forecast their prospects - everyone knows someone who has recovered from the flu. Now, most stories circulating about people sick with the coronavirus involve grave illness and death.

"I turned off the TV," said Danielle Maggiotta, 33, a special-education teacher from Nassau County, New York, and a Survivor Corps member. "That doesn't give you a good outlook on what could potentially be in store for you."

People are greedy for stories from others with similar symptoms a few stages ahead in the illness. How did your symptoms progress? What helped? Where's the happy ending?

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Samantha Rosenberg, 31, of Long Island, a supervisor at a party products company, lost an uncle to covid-19. After testing positive herself, she posted on Survivor Corps about stomach pain she worried might force her to seek medical care. "I'm scared to go, what if I infect people," she asked.

Finding other people with similar pain helped rally her a little longer, she said.

People compare rashes that leave the skin feeling as though it was grated, crusty eyes, lesions on toes, breathing that makes a crackling sound. The lag of research to understand these symptoms can make their illness more isolating and frightening.

Debbie Olsen, 58, who lives in rural Delaware, posted about an itchy, chickenpox-like rash that broke out all over her body, including around her eyes, ears and lips. "I wanted to let you all know so no one freaks out about it," she wrote to the Facebook group, posting a picture of her mottled hand.

People posted more than 200 comments and their own rash photos. Following their suggestions, Olsen took an oatmeal bath and consulted a dermatologist.

Susan Silverman, 64, a spin instructor in Montgomery County, Pennsylvania, tested positive in mid-March. As she experienced a loss of smell and taste and a clot in her arm, her husband, a pulmonary and critical care physician, searched the covid-19 medical literature - and found nothing. Researchers shortly afterward linked those symptoms with the illness.

When Silverman developed blurred vision, vertigo and hives, she turned to Survivor Corps and found others experiencing the same.

"It's a relief," she said. "I'm not losing my mind."

One woman whose illness did not include the best-known trifecta of fever, cough and shortness of breath posted that her doctor dismissed her as perimenopausal.

"That's ridiculous," answered Eileen McDermott, 43, an editor for an intellectual property blog who lives in the Hudson Valley of New York. She tested positive for the coronavirus, and her temperature never rose above 99.5 degrees, she said. "And never had a cough worth mentioning," McDermott wrote.

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The Centers for Disease Control and Prevention recently added six other symptoms of covid-19 to its short list of fever, cough and shortness of breath. But the list still excludes symptoms researchers have identified, such as toe lesions, clots, stomach pain- as well as many more discussed on Facebook.

Online, people are also combing through collective experiences to address questions science cannot yet fully answer: What signs suggest a shift for the worse? How long can a person be contagious? Why do some people experience a long course of illness?

Steven Ortiz, 27, who works at Newark Liberty International Airport in New Jersey, tested positive for the virus in March. Two weeks later, he still had shortness of breath, worsening sore throat and a cough, but his doctor cleared him to return to work.

Reading Survivor Corps posts about prolonged illness, he said, helped give him the confidence to press for another test. When a second test showed he was still positive and a third test showed inconclusive results, the doctor ordered continued isolation.

"I work at the airport," he posted to the group. "If I went back, I would've infected so many people."

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On Survivor Corps, several dozen volunteer administrators monitor posts for adherence to rules including no unsubstantiated health advice, no unsubstantiated scientific conclusions and no conspiracy theories, Berrent said. They receive alerts to examine posts containing key words and phrases such as "vitamin," "virus was created," "biowarfare," "poison," "bleach," "ingest," "disinfectant," "gofundme" and "I recommend taking."

But things slip through. Anna V. de Ocampo, 52, a pediatrician in Fayetteville, North Carolina, became disillusioned with the Survivor Corps Facebook page after someone posted a question about when to go to the ER with difficulty breathing - other commenters suggested Xanax or a change of diet.

"She needs to understand to go to ER now and hopefully not self-medicate without seeing a doctor first," de Ocampo warned.

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More often, people help one another make sense of public health and medical advice that doesn't quite seem to apply. Six weeks after falling ill with the coronavirus in early March, Liz Cooperrider, 56, a retired architectural designer in Bend, Oregon, still felt unwell. She had to decide whether to keep a previously scheduled mammogram and breast ultrasound - she had had an abnormality on a previous test and a family history of breast cancer. But she was worried about exposing the staff to the virus.

Her doctor's only advice was to follow the CDC guidelines for ending isolation: seven days after onset of symptoms, plus 72 hours without fever and a reduction of other symptoms. (It has since changed to 10 days after onset of symptoms.)

"Just wondering how others are navigating this," she posted on Survivor Corps. People wrote more than 150 comments - she read every one.

She also looked up the radiologist's coronavirus precautions and found them stringent. She eventually decided to go to the office and also to warn each staff member she encountered.

“Basically, it’s like, nobody knows,” she said.