Doctors could not help these COVID-19 patients with their endless symptoms. So they turned to each other.

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Jennifer English was sick, scared and confused. For two weeks, the single mother from Oregon City, Oregon, had no sense of taste, a fever that reached 102.5 degrees, and uncomfortable tightness in the chest.

English, 46, who helps run a restaurant and bar, suspected that she had coronavirus and feared that her health would worsen, leaving her unable to take care of her son. But during phone calls and virtual doctor’s appointments, doctors downplayed his concerns.

When she started to feel so overwhelming dizziness that she collapsed on the bathroom floor in mid-April, English went to the emergency room and demanded a test for COVID-19. An emergency doctor gave her the test, but told her that she probably had a panic attack – even if the Englishman has no history of anxiety – and sent her home.

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Two days later, his coronavirus test came back positive and the Englishman was relieved to finally have a diagnosis. But it didn’t improve, and the doctors’ suggestions – rest and take a prescription cough medication – didn’t help.

Jennifer English with her son, Hunter, 14.Courtesy of Jennifer English

So she joined a support group on Facebook coronaviruses at the suggestion of a friend, and felt instantly validated: people around the world described fevers that lasted for weeks, fatigue that did not go away and a mountain Russian emotions as they faced the unknown new disease, just as it was.

“It was huge, because I felt so lonely at the time, and no one was helping me,” said English, whose fever persisted for 31 days.

COVID-19 is as mystifying as it is insulating. Those who obtain it are often separated from their loved ones and seek answers that the medical community does not yet have. As a result, millions of coronavirus survivors and family members of patients turn to another source of information and support: each other.

“These are people who are at the scariest and scariest time of their lives, and they are alone,” said Diana Berrent of Port Washington, New York, a photographer who founded Survivor Corps, the Facebook group at which l joined, while Berrent had the coronavirus itself.

Diana Berrent donates convalescent plasma.Courtesy of Diana Berrent

His group now has more than 45,000 members.

“We have your back,” said Berrent. ” We understand. “

The Survivor Corps is one of the largest of these Facebook groups, but it is far from alone: ​​more than 4.5 million people have joined 4,000 COVID-19 support groups based in the United States, according to Facebook .

While healthcare professionals generally warn against using health information found online, in this case, some doctors are open to crowd-sourced ideas – especially as symptoms of coronavirus persist for some. patients.

Family physician at Northwestern Medicine Regional Medical Group, Ashley Stoecker, joined a Facebook group, Long Haul COVID Fighters, at the suggestion of one of her patients who had been suffering from symptoms for weeks.

She published a survey in the group to collect data on the symptoms, the duration of the disease and whether the patients had a positive or negative test for COVID-19.

“To see my patients suffer for as long as they do and to feel that I have nothing to do for them is really difficult. “

The goal was “to learn from people who go through these things on a daily basis to see if there are things that can help us put an image together in a puzzle for which we have no answers at this point,” Said Stoecker.

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“We are basically treating the symptoms because we don’t have clear studies that have shown what can be helpful,” she said. “To see my patients suffer for as long as they do and to feel that I have nothing to do for them is really difficult. “

Avoid misinformation

Like other social media platforms, Facebook has historically struggled to contain the spread of misinformation about health and said it has taken an aggressive approach to moderating the content of coronaviruses.

In April, the social media giant posted warning labels against misinformation on approximately 50 million COVID-19-related content. The company also directs all users who have liked or commented on the coronavirus misinformation it has reported to a website that debunks the World Health Organization’s coronavirus myths.

But dangerous misinformation isn’t the only problem patients can face when listening to suggestions online, especially with the coronavirus, experts say.

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In addition to the symptoms caused by COVID-19, the disease can complicate underlying chronic medical conditions. Primary care doctors are trained to take both into account and to deal with them appropriately – something that Facebook commentators who “decide to become Dr. Google” cannot, said Dr. Jacqueline Fincher, president of American College of Physicians.

“If you are diabetic or hypertensive or have congestive heart failure, going through a serious illness like this can certainly have an impact on them,” she said. “Maybe your blood sugar is out of control, and that’s why there is more fatigue. “

In the Survivor Corps group, nearly 30 volunteer administrators work to make sure all articles follow the rules of the page, said Berrent.

“You cannot seek advice from other people – unless it is” you must go to the emergency room now. “”

“If you publish a scientific theory that has no scientific source attached, or a YouTube video made in your kitchen, or anything that is self-published, that is deleted,” she said. “You can give anecdotal information about your experience, but you cannot give medical advice to other people – unless it is” you have to go to the emergency room now. “”

Vicki Judd, 49, of Mohawk, New York, recently asked the Survivor Corps for comments – not for medical advice, but for advice on treating the mental health component of the coronavirus.

Vicki Judd with his family.Courtesy of Vicki Judd

Judd, who works in information technology sales, had six weeks of severe coronavirus symptoms, including one week on a ventilator, and saw a therapist to treat the trauma from her experience. Three weeks after her recovery, she suddenly had a cough, headache and a slight fever.

Terrified that she might relapse, she polled the group on how to stay grounded. The answers poured in: call the doctor to see if it could be allergies; do breathing exercises; and recognize that it could have come from anxiety, given all she’s been through. Judd’s doctor ended up changing his allergy medication and the symptoms went away.

The group was comforting to Judd upon arrival.

“It just made me sob and sob,” she said. “It was a relief, an excitement, a sadness that someone else knew what you were going through. “

Compare symptoms and inform research

Others have found that social media is sometimes ahead of doctors’ understanding of the disease.

Christy Canter during a hospitalization in March. Her oxygen levels were so low, her lips turned blue.Courtesy of Christy Canter

Christy Canter, 48, of Dallas, Georgia, was hospitalized twice in a week for breathing difficulties due to COVID-19, and developed a rash soon after returning home. The nurse she called said it was probably a reaction to the medicine she had received in the hospital. Curious to know if others had experienced the same thing, Canter, a housewife, asked the Survivor Corps group and was stunned when more than 100 people said that they had done it and that it was also on their upper bodies like Canter was – and at the same time in their recovery.

“The group confirms all the things you have gone through or that you have felt or felt,” she said. “It makes you realize,‘ OK, I wasn’t crazy, I’m not alone. ‘ “

Berrent conceived the Survivor Corps as a service organization, and the group provides information on how and where to donate convalescent plasma, the antibody-rich blood product of individuals who have recovered from the disease and is being infused as experimental therapy to patients still struggling. .

Bill Cudnyj.Courtesy of Bill Cudnyj

Some Survivor Corps members say they take as much comfort in reading other people’s stories as they do in sharing their own. Bill Cudnyj, 52, of Clifton, New Jersey, joined a few days after a three and a half week hospital stay in which he came so close to death that he called his wife to one time to share all of her passwords with her and tell her her wishes for her funeral. He is still on a 24/7 oxygen machine at home, but actively participates in the group.

“I like to comment, share, talk,” he said. “It helps you get through it, because holding it back really doesn’t help. “

Sympathy and guilt of the survivor

While these groups are full of stories of triumph over the coronavirus, not all articles are positive. Among them are tragic updates from people informing groups that their loved one has died of the disease, often thanking members for their support.

They are heartbreaking for everyone, but for those who also feared dying, they can also bring the guilt of the survivors.

“The elderly obviously make me sick, but I’ll tell you that it is the younger ones that make me feel guilty,” said Judd, the New York woman who saw a trauma therapist. ” That hurts me. “

Canter of Georgia discovered that the best solution for guilt was to help others. She has her first appointment next week to give convalescent plasma.

For her, it’s personal: she recently discovered that shortly after her discharge from the hospital, the respiratory therapist who treated her died from COVID-19.

“I don’t know if he got it from me or someone else,” said Canter, whose respiratory therapist died shortly after leaving the hospital.

“I don’t know if he got it from me or someone else,” she said. “There are so many unanswered questions. “

English, the single mom from Oregon, said the deluge of daily stories from those who die from the virus is overwhelming.

What helped her the most was the email friends she made through social media: individuals in New York, Dubai, and Italy whom she dubbed her “friends of the virus.” “

“The biggest thing with these three was laughing and crying, just a release of energy and frustration and everything,” she said. “Depression is so bad with that. “

She plans to stay in touch with the friends she made after her ordeal.

“I hope, at some point, to go see them all,” she said, “and go give them a big hug. “

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