Nov. 9, 2022 -- Jill Sylte wrote that she would not have made it through long COVID without her Facebook support group, Survivor Corps.
“It has helped me so much, by being able to be in touch with other long hauler members,” the Pensacola, FL, woman wrote in a comment on a group post in March. “Everyone in this group understands each other. Unless you are a long-hauler you don't completely feel what we are going through.”
The listing of hundreds of Facebook long COVID communities goes on for page after page. Some have a few members. Survivor Corps has nearly 200,000.
“This space has absolutely exploded in the past 2 years,” says Fiona Lowenstein, a journalist who started the group called Body Politic that has become a COVID support group.
The public Facebook COVID and long COVID groups are studded with posts and comments like this among the hundreds that can come in a day.
On a single day in late October, Survivor Corps posters were trying to find out if anyone else had hair loss, rashes, sleep apnea issues, migraines, bladder problems, neck pain, vertigo, allergies, or double vision. An October post on increasing cholesterol levels drew more than 50 comments within 17 hours.
The support groups provide advice and encouragement that patients often are not getting from their medical providers, friends, and family. They're also a source of valuable data for researchers. But some doctors worry that they are not always entirely benign, even as they gain popularity.
From Hospital Meeting Rooms to Online
Patient support groups have moved out of the hospital community room and onto Facebook, Reddit, WhatsApp, and other online spaces. Before long COVID was recognized, these forums were a lifeline for patients with chronic conditions.
After having lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for years, long COVID seemed familiar to JD Davids, a chronic disabilities activist in Brooklyn who works with a group called Long COVID Justice. He thinks patient groups are important for anyone with unexplained post-infection symptoms like extreme fatigue.
“One of the problems is that these often-volunteer-based patient support groups are all that people have,” Davids says. The groups are essential to patients but need to be part of a comprehensive care plan, he says.
While offering support, online groups can be sources of misinformation and unproven remedies. Advocates and doctors say some group members come to them asking about miracle cures and supplements.
Alexander Truong, MD, a doctor at Emory University in Atlanta who works with long COVID patients, says many of his patients have bought expensive but useless vitamins and supplements they learn about online.
“A lot of these patients are grasping at straws to try to 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 SciLine, 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 signed on to Facebook can read the posts.
A Treasure Trove of Data
Analysis of these private patient conversations can also produce useful data for researchers. The organization Patients Like Me, founded in 2005 to support families with ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease) is built around the concept.
Researchers at Yale and elsewhere are already working with long COVID patient groups. Facebook's Data for Good program offers three COVID databases based on posting on the platform. The Patient-Led Research Collaborative provided data for a study published in The Lancet that was among the first the characterize long COVID.
For Facebook groups, the site's rules requiregroup moderators to “obtain user consent for your use of the content and information that you collect.” But the platform has been fighting “unauthorized scrapers” who lift data off Facebook and republish it.
The Survivor Corps group, the largest long COVID Facebook group with nearly 200,000 members, is public. Anyone can read any of the posts. Those signed into Facebook can click on the “People” tab and see any group members who have a single mutual contact.
Diana Berrent, a New York photographer who caught COVID-19 early in the pandemic, is the founder of and a contributor to the Survivor Corps Facebook group and its sister website. She thinks the choice of support group might be a matter of where someone already spends their time online.
“And I don't see it's a privacy issue,” she says. “It's really whatever platform you're most comfortable in.”
Berrent also runs polls and had worked with researchers at Yale, the National Institutes of Health, and elsewhere.Although the data on her site can be valuable, Berrent says she has turned down offers from buyers.
At the same time, she says she received grant money from the Bill & Melinda Gates Foundation and the Chan Zuckerberg Initiative when she started her work, but it has run out. She doesn't want to ask for donations from support group members. She says she has funds to pay for one full-time employee and one part-time employee.
Group moderators say money for this cause is hard to come by. And this need for funding can be a vulnerability. Some well-established patient groups specializing in a range of conditions get money from the pharmaceutical industry. But with no marketable treatment for long COVID, corporate sponsors are scarce.
That can lead to please for cash.“To be blunt, our financial situation is dire. We estimate Body Politic, including our Slack space, will cease to exist by early 2023 without funding (GOAL: $500k),” Body Politic said in an Instagram post early in November.
“Our team is pursuing private donors, foundations, and strategic partners, and we could use more connections and insights on potential partners.”
Groups like Body Politic say they need money to hire more moderators, pay for increasingly robust software subscriptions, advocate for patients, offer public education, and work with government and health leaders.
The Struggle to Keep Up
Hosting a group can be a big commitment. Florida nurse Laney Bond says when COVID-19 emerged, she set up a Facebook group to help fellow nurses. Bond, who had been treated previously for mast cell activation syndrome -- which can cause allergic reactions – started to develop long COVID symptoms like heart problems and brain fog.
Bond says she noticed online discussions about long COVID patients with similar symptoms and wanted to share the evidence-based medicine she had been gathering about post-viral illness.
“I just threw a group out there for people in hopes that the information and my experience would shorten their journey,” she says.
Now Bond has trouble keeping up with the 95,000 members signed up for her COVID-19 Long Haulers Support group. She also hosts a web page where she posts simplified information on COVID-19 she gets from the National Institutes of Health.
Bond is a volunteer with a day job. She says she makes about $10 a month from Google ads on the website she runs in addition to the Facebook page, but otherwise, has no funding source. So she's backed up on the moderation.
“It's too much, but I do my best,” she says. Facebook has provided some moderator tools to help.
A New Age of Advocacy
The internet has spawned the engaged patient – people who do their own research and plan care along with their doctors. The engaged long COVID patient is bringing in “a new age of advocacy,” David Putrino, PhD, a physical therapist and professor at the Icahn School of Medicine at Mount Sinai in New York City, writes in a Perspective for Medscape, WebMD's sister site for medical professionals.
“Such organizations are driving incredibly comprehensive biomedical and clinical research, and doing so at an unprecedented pace,” he writes.
Support from other patients is essential for people with chronic conditions, but it need to be paired with solid medical care and support services, advocates say.
Davids says he is most active in the Body Politic channel on the online tool Slack, where 11,000 members meet privately. He appreciates that a human, not an algorithm, chooses which posts he sees. And he thinks Body Politic is well moderated, something he and others suggest patients consider when joining a group.
“Support groups should be moderated. You could ask as a support group member -- how are our moderators trained? How do you know are they equipped to manage the space?” he asks.
The Survivor Corps page is “heavily, heavily, moderated,” Berrent says. Users “cannot state a scientific fact unless they link to a legitimate source,” she says. They can talk about what has helped them, but they can't give medical advice or talk politics.
Conflict among group members may be a source of agitation and that could be a drawback, Davids cautions. He suggests that patients try out a few groups and see what happens when conflicts emerge.
“How is it handled? Does it sit right with you? Does it get your heart racing -- which you certainly don't need?” he says. Davids offers a list of recommended groups on his Long COVIDJustice page.
The Body Politic group was founded as a wellness collective before the pandemic but morphed into a long COVID group in 2020 when Lowenstein and another member got sick. They say they couldn't find help anywhere else.
Lowenstein, who now has mild symptoms and no longer runs the group, agrees that patient support groups should be well-moderated. Lowenstein also thinks they should be limited to those with long COVID and worries that journalists and people curious about COVID dwell on the public sites.
“It's not a particularly private or safe-feeling space for people with long COVID,” Lowenstein says.
Facebook has taken some action on COVID communities, including an effort to look for members in distress. Bond, who runs the COVID Care Group, says she was vetted by Facebook earlier this year and they shared some moderator tools, including a red flag for postings that suggest suicide. Bond says she did 20 suicide interventions last year for long COVID patients.
Meta, the parent company of Facebook and Instagram, has COVID and vaccine misinformation policies. The company reports that it has removed 27 million pieces of content from Facebook and Instagram feeds and more than 3,000 accounts, pages, and groups for violations.
But the stream of posts and comments continues. Christian Sandrock, MD, director of critical care at University of California Davis, says many of his long COVID patients get information on Facebook.
“What we really say is — almost as an absolute — is if anyone is saying this definitely works, this is awesome, it is a quick fix … don't go with,” he said during the SciLine briefing. “We know this disease is complex. We know we don't have good answers.“