Doctors couldn’t help these COVID-19 patients with their endless symptoms. So they turned to one another.

Doctors couldn’t help these COVID-19 patients with their endless symptoms. So they turned to one another.

Doctors couldn’t help these COVID-19 patients

Jennifer English was sick, scared and confused. For two weeks, the Oregon City, Oregon, single mother had had no sense of taste, a fever that reached 102.5 degrees and an uncomfortable tightness in her chest.English, 46, who helps manage a restaurant and bar, suspected she had the coronavirus and worried her health might worsen, leaving her incapable of caring for her son. But in phone calls and virtual doctor appointments, physicians downplayed her concerns.When she then started experiencing dizziness so overpowering that it caused her to collapse on her bathroom floor in mid-April, English went to an emergency room and demanded a test for COVID-19. An ER physician gave her the test, but told her she had likely had a panic attack — even though English has no history of anxiety — and sent her home.Full coverage of the coronavirus outbreakTwo days later, her coronavirus test came back positive, and English was relieved to finally have a diagnosis. But she did not get better, and doctors’ suggestions — to rest and take a prescription cough medicine — did not help.Jennifer English with her son, Hunter, 14.Courtesy Jennifer EnglishSo she joined a Facebook COVID-19 support group on a friend’s suggestion, and felt instantly validated: People from all over the world were describing fevers that lasted for weeks, fatigue that wouldn’t go away and a roller coaster of emotions as they coped with the unknowns of the novel illness, just as she was.”That was huge, because I felt so alone at the time, and nobody was helping me,” English, whose fever lingered for 31 days, said.COVID-19 is as mystifying as it is isolating. Those who get it are often separated from their loved ones and seeking answers that the medical community does not yet have. As a result, millions of coronavirus survivors and family members of patients are turning to a different source for information and support: one another.”These are people who are at the scariest, most frightening moment of their lives, and they’re alone,” said Diana Berrent of Port Washington, New York, a photographer who founded Survivor Corps, the Facebook group that English joined, while Berrent had the COVID-19 herself.Diana Berrent donates convalescent plasma.Courtesy Diana BerrentHer group now has more than 45,000 members.”We have your back,” Berrent said. “We understand.”Survivor Corps is among the biggest of such Facebook groups, but it is far from the only one: More than 4.5 million people have joined 4,000 U.S.-based COVID-19 support groups, according to Facebook.While medical professionals generally warn against relying on health information found online, in this case, some doctors have been open to crowd-sourced ideas — especially as symptoms of the COVID-19 persist for some patients.Dr. Ashley Stoecker, a family medicine doctor with the Northwestern Medicine Regional Medical Group, joined a Facebook group, Long Haul COVID Fighters, at the suggestion of one of her patients who had been struggling with symptoms for weeks.She posted a survey in the group to gather data about symptoms, duration of illness, and whether patients had tested positive or negative for COVID-19.”Seeing my patients suffering for as long as they are and feeling like I don’t have anything to do for them is really difficult.”The goal has been to “learn from the people experiencing these things on a day-to-day basis to see if there are things that can help us put together a picture in a puzzle that we don’t have answers for at this point,” Stoecker said.Let our news meet your inbox. The news and stories that matters, delivered weekday mornings.”We are basically just treating the symptoms, because we don’t have clear studies that have shown what can be helpful,” she said. “Seeing my patients suffering for as long as they are and feeling like I don’t have anything to do for them is really difficult.”Steering clear of misinformation like other social media platforms, Facebook has historically struggled to contain the spread of health misinformation and says it has taken an aggressive approach to moderating coronavirus content.In April, the social networking giant put misinformation warning labels on about 50 million pieces of COVID-19-related content. The company is also directing any users who have liked or commented on COVID-19 misinformation that it has flagged to a website that debunks coronavirus myths from the World Health Organization.But dangerous misinformation is not the only problem patients can run into when heeding suggestions online, especially with the COVID-19, experts say.Download the NBC News app for full coverage of the COVID-19outbreakIn addition to the symptoms caused by COVID-19, the disease can complicate underlying, chronic medical conditions. Primary care doctors are trained to account for both, and treat appropriately — something Facebook commenters who “decide to become Dr. Google” cannot, Dr. Jacqueline Fincher, president of the American College of Physicians, said.”If you’re diabetic or hypertensive or have congestive heart failure, going through a major illness like this can certainly impact those,” she said. “Maybe your blood sugar is out of whack, and that’s why there’s more fatigue.”In the Survivor Corps group, nearly 30 volunteer administrators work to make sure all posts adhere to the page’s rules, Berrent said.”You can’t tell other people medical advice — unless it’s ‘you need to go to the emergency room right now.'””If you post a scientific theory that doesn’t have a scientific source attached to it, or a YouTube video made in your kitchen, or anything that is self-published, that gets taken down,” she said. “You can give your anecdotal information on your experience, but you can’t tell other people medical advice — unless it’s ‘you need to go to the emergency room right now.'”Vicki Judd, 49, of Mohawk, New York, recently asked Survivor Corps for input — not for medical advice, but for guidance on dealing with the mental health component of the COVID-19.Vicki Judd with her family.Courtesy Vicki JuddJudd, who works in information technology sales, had six weeks of severe COVID-19 symptoms, including one week on a ventilator, and has been seeing a therapist to process the trauma of her experience. Three weeks into her recovery, she suddenly got a cough, headache and slight fever.Terrified she could be relapsing, she polled the group on how to stay grounded. Responses came flooding in: Call the doctor to see if this could be allergies; do breathing exercises; and recognize that this could be from anxiety, given everything she has been through. Judd’s doctor ended up switching her allergy medications, and the symptoms went away.The group was comforting to Judd from the moment she joined.”It just made me sob and sob,” she said. “It was relief, excitement, sadness that somebody else knows what you’re going through.”Comparing symptoms and informing researchOthers have found social media to sometimes be ahead of doctors’ understanding of the disease.Christy Canter during a hospitalization in March. Her oxygen levels were so low, her lips were turning blue.Courtesy Christy CanterChristy Canter, 48, of Dallas, Georgia, was hospitalized twice in one week for breathing difficulties from COVID-19, and got a rash shortly after she came home. The nurse she called said it was likely a reaction to the medication she was given in the hospital. Curious if others had gone through the same thing, Canter, a homemaker, asked the Survivor Corps group and was stunned when more than 100 people said they had and that it was also on their upper body like Canter’s was — and at the same point in their recovery.”The group confirms all the things you went through or that you sensed or felt,” she said. “It makes you realize, ‘OK, I wasn’t crazy, I’m not the only one.'”Berrent conceived Survivor Corps as a service organization, and the group offers information on how and where to donate convalescent plasma, the antibody-rich blood product from individuals who have recovered from the disease that is being infused as an experimental therapy into patients still battling it.Bill Cudnyj.Courtesy Bill CudnyjSome members of Survivor Corps say they take as much comfort in reading others’ stories as they do in sharing their own. Bill Cudnyj, 52, of Clifton, New Jersey, joined days after a three and a half week hospital stay during which he came so close to death, he called his wife at one point to share all his passwords with her and tell her his wishes for his burial. He is still on an oxygen machine 24/7 at home, but is actively participating in the group.”I like commenting, sharing, talking,” he said. “It gets you through things, because holding them in really doesn’t help.”Sympathy and survivor guiltWhile these groups are overflowing with stories of triumph over the coronavirus, not all the posts are positive. Interspersed among them are tragic updates from people informing the groups that their loved one has died from the illness, often thanking members for their support.They are heartbreaking for everyone, but for those who feared they too would die, they can also bring survivor guilt.”The older people obviously hurt my heart, but I’ll tell you, the younger people are what make me feel guilt-ridden,” said Judd, the New York woman who has been seeing a trauma therapist. “It hurts me.”Canter, of Georgia, has found that the best outlet for the guilt is in helping others. She has her first appointment next week to donate convalescent plasma.For her, it’s personal: She recently found out that shortly after she was released from the hospital, the respiratory therapist who treated her died of COVID-19.”I don’t know if he got it from me or somebody else,” said Canter, whose respiratory therapist died shortly after she left the hospital.”I don’t know if he got it from me or somebody else,” she said. “It’s just so many unanswered questions.”English, the single mother in Oregon, said the deluge of stories every day of those who are dying from the virus is overwhelming.What has helped her the most is messaging friends she has made through social media: individuals in New York, Dubai and Italy whom she has dubbed her “virus buddies.””The biggest thing with those three has been laughing and crying, just a release of energy and frustration and everything else,” she said. “Depression is so bad with this.”She plans to keep in touch with the friends she has made as a result of her ordeal.”I’m hoping, at some point, to go visit all of them,” she said, “and go give them a big hug.”Follow NBC HEALTH on Twitter & Facebook.
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