Editor’s Note: Find the latest COVID news and long tips at Medscape’s Long COVID Resource Center.
November 9, 2022 – Jill Sylt writes that she wouldn’t have survived COVID for long without Facebook’s support group, Survivor Corps.
“It helped me a lot, by being able to connect with other members over long distances,” the Pensacola, Florida, woman wrote in a comment to a group post in March. “Everyone in this group understands each other. Unless you are traveling long distances, you will not fully feel what we are going through.”
The long list of hundreds of COVID communities on Facebook goes on page after page. Some have few members. The corps of survivors is approximately 200,000.
“This space has completely exploded in the last couple of years,” says Fiona Lowenstein, the journalist who founded the group called Body Politic that has become the COVID support group.
Facebook COVID public and long COVID groups are filled with posts and comments like this among the hundreds that can come in a single day.
On one day in late October, Survivor Corps posters were trying to find out if anyone else had hair loss, rashes, sleep apnea problems, migraines, bladder problems, neck pain, dizziness, allergies, or double vision. An October post about increasing blood cholesterol levels drew more than 50 comments within 17 hours.
Support groups provide advice and encouragement that patients often do not get from medical providers, friends and family. It is also a source of valuable data for researchers. But some doctors worry that they aren’t always completely benign, even as they gain popularity.
From hospital meeting rooms to the Internet
Patient support groups have moved from the hospital community room to Facebook, Reddit, WhatsApp and other online spaces. Long before COVID was recognized, these forums were a lifeline for patients with chronic illnesses.
After living with encephalomyelitis/chronic fatigue syndrome (ME/CFS) for years, COVID sounded familiar to JD Davids, a chronic disability activist in Brooklyn who works with a group called Long COVID Justice. Patient groups are believed to be important for healthy people with unexplained post-infection symptoms such as extreme fatigue.
“One of the problems is that patient support groups that often rely on volunteers are all that people have,” Davids says. He says the groups are essential for patients but should be part of a comprehensive care plan.
While providing support, online groups can be sources of misleading information and unproven treatments. Advocates and doctors say some group members come to them and ask about miracle cures and supplements.
Alexander Trong, MD, a physician at Emory University in Atlanta who works with long-time COVID patients, says many of his patients have bought expensive but useless vitamins and supplements that they learned online.
“A lot of these patients are clinging to straws to try and figure out anything that can make them feel better and they are very vulnerable to this kind of scam,” he said. During a live online forum hosted by SciLineIt is a project of the American Association for the Advancement of Science.
Privacy can be another issue. Tens of thousands of people post details about their health and lives in public Facebook groups. Anyone who is logged into Facebook can read the posts.
treasure of data
Analyze this special Patient conversations can also produce useful data for researchers. the organization patients like meFounded in 2005 to support families with amyotrophic lateral sclerosis (AMS, or Lou Gehrig’s disease) is built around this concept.
Researchers at Yale University and elsewhere Already working With long cohorts of COVID patients. Facebook data for good Program Offers Three COVID databases Based on posting on the platform. The Collaborative Society for Patient-Led Research provided data on a A study published in scalpel That was among the first to characterize the prolonged COVID.
For Facebook groups, the site Rules requireGroup Intermediaries “to obtain user consent for your use of the content and information you collect.” But the platform has been fighting “unauthorized scrapers” who take data off Facebook and repost it.
The Survivor Corps group, the longest-running COVID group on Facebook with nearly 200,000 members, is a public group. Anyone can read any of the posts. Those who are logged into Facebook can click on the People tab and see which members of the group have one mutual contact.
Diana Burnett, the New York photographer who captured COVID-19 early in the pandemic, is a founder and contributor to the Survivor Corps group on Facebook and its sister site. She believes that choosing a support group may be a matter of where someone actually spends their time on the Internet.
“I don’t see it as a privacy issue,” she says. “It’s really whatever platform you feel comfortable in.”
Burnett also runs surveys and has worked with researchers at Yale University, the National Institutes of Health, and elsewhere.Although the data on her site could be valuable, Burnett says she has turned down offers from buyers.
At the same time, she says she received a grant from the Bill & Melinda Gates Foundation and the Chan Zuckerberg Initiative when she started her business, but it ran out. You don’t want to solicit donations from support group members. She says she has money to pay for a full-time employee and a part-time employee.
The group’s moderators say it’s hard to get money for the cause. This need for funding can be a weakness. Some well-established patient groups Specialists in a range of conditions make money from the pharmaceutical industry. But with no marketable cure for COVID for a long time, corporate sponsors are scarce.
This can lead to cash gratification.“To be honest, our financial situation is dire. We estimate that Body Politic, including our Slack space, will cease to exist by early 2023 without funding (target: $500,000),” Body Politic He said in a post on Instagram early in november.
“Our team is following up on donors, foundations, and strategic partners from the private sector, and we can use more connections and insights about potential partners.”
Groups like Body Politic say they need the money To hire more brokersPay for subscriptions for increasingly robust programs, advocate for patients, deliver public education, and work with government and health leaders.
The struggle to keep up
Hosting a group can be a huge commitment. Florida nurse Lanny Bond says that when COVID-19 emerged, she set up a Facebook group to help her fellow nurses. Bond, who was previously treated for mast cell activation syndrome — which can cause allergic reactions — began developing lingering COVID symptoms such as heart problems and brain fog.
Bond says she’s noticed online discussions of long-time COVID patients with similar symptoms and wanted to share the evidence-based medications she’s been gathering about post-viral illness.
“I just threw out a group for people in the hope that the information and experience I had would shorten their journey,” she says.
Bond is now having trouble keeping up with the 95,000 registered members of her COVID-19 Long Haulers Support group. It also hosts a webpage that publishes simplified information on COVID-19 that it obtains from the National Institutes of Health.
Bond is a volunteer at a day job. She says she earns about $10 a month from Google ads on the website she runs as well as the Facebook page, but other than that, she has no funding source. So it supported moderation.
“It’s too much,” she says, “but I’m doing my best.” Facebook has provided some broker tools to help.
New era of calling
The Internet has spawned committed patient – people who do their own research and plan care with their doctors. Longtime COVID patient brings a “new era of advocacy,” David Putrino, Ph.D., physical therapist and professor at Icahn School of Medicine in Mount Sinai in New York City, Writes in perspective for MedscapeWebMD’s sister site for medical professionals.
“Organizations like this are leading incredibly comprehensive biomedical and clinical research, and they’re doing it at an unprecedented pace,” he is writing.
Advocates say support from other patients is essential for people with chronic illnesses, but must be combined with robust medical care and support services.
Davids says he’s more active in Body Politic Channel On the online tool Slack, where 11,000 members meet privately. He appreciates that it’s the human, not the algorithm, who chooses the posts he sees. He believes Body Politic is well moderated, something he and others suggest patients should consider when joining a group.
“Support groups need to be moderated. You can ask as a support group member – how are our supervisors trained? How do you know they are equipped to manage the space?” he asked.
The Survivor Corps page is “quite moderate and intense,” Burnett says. “Users cannot cite a scientific fact unless they link to a legitimate source,” she says. They can talk about what helped them, but they can’t give medical advice or talk about politics.
Davids cautions that conflict between group members can be a source of excitement and this can be a disadvantage. He suggests that patients try a few combinations and see what happens when conflicts arise.
“How is it handled? Is it sitting right with you? Is your heart racing – which you definitely don’t need?” he says. Davids offers a list of recommended groups on their site COVID longjustice page.
Body Politic was founded as a wellness group before the pandemic but turned into a long COVID group in 2020 when Lowenstein and another member fell ill. They say they can’t find help anywhere else.
Lowenstein, who now has mild symptoms and is no longer managing the group, agrees that patient support groups should moderate well. Lowenstein also believes that it should be limited to those who have had COVID for a long time and fears that journalists and people curious about COVID are staying in public locations.
“It’s not a particularly private or safe space for people who have had COVID for a long time,” Lowenstein says.
Facebook has taken some action on COVID communities, including trying to search for members in distress. Bond, who runs the COVID Care Group, says she was vetted by Facebook earlier this year and they shared some admin tools, including a red flag for posts that suggest suicide. Bond says she performed 20 suicide interventions last year for long-term COVID patients.
Meta, the parent company of Facebook and Instagram, It has misinformation policies about the coronavirus and vaccine. The company reported that it removed 27 million pieces of content from its Facebook and Instagram feeds and more than 3,000 accounts, pages, and groups due to the violations.
But the flow of posts and comments continues. Kristian Sandrock, MD, director of critical care at UC Davis, says many of his coronavirus patients get information on Facebook.
“What we’re really saying is – almost as an absolute – is that if anyone says this definitely works, that’s great, it’s a quick fix…don’t get along with it,” he said during the SciLine briefing. We know that this disease is complex. We know we don’t have good answers.”