Patients with Long COVID Find Help and Risk in Online Support Groups

Without her Facebook support group, Survivor Corps, Jill Sylte claimed she would not have survived long COVID.

The Pensacola, Florida, lady commented on a group post in March, saying, “Being able to be in touch with fellow long hauler members has helped me so much.” “Everyone in this group can communicate with one another. You can’t fully understand what we’re going through unless you drive a great distance.

Numerous Facebook lengthy COVID communities are listed on pages and pages. Some only have a few people. Nearly 200,000 people are Survivor Corps.

The Body Politic group, which has evolved into a COVID support group, was founded by writer Fiona Lowenstein. She claims that “this area has totally erupted in the past 2 years.”

Among the hundreds of posts and comments that can arrive in a day, the public Facebook COVID and long COVID groups are littered with this kind of content.

Posters for Survivor Corps were looking for anyone who suffered hair loss, rashes, sleep apnea disorders, headaches, bladder troubles, neck discomfort, vertigo, allergies, or double vision on a single day in late October. In just 17 hours, more than 50 comments were left on a piece about raising cholesterol levels from October.

Support groups offer guidance and motivation that patients frequently do not receive from their doctors, friends, or family. They provide researchers with useful data as well. However, despite their growing popularity, some doctors warn that they are not always completely benign.

Meeting spaces in hospitals and online

Aside from the hospital community area, patient support groups are now found on Facebook, Reddit, WhatsApp, and other online platforms. These forums became a lifeline for patients with chronic diseases as soon as COVID was acknowledged.

JD Davids, a Brooklyn-based advocate for people with chronic impairments who works with a group called Long COVID Justice, had years of experience living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), thus long COVID was familiar to him. For otherwise healthy patients who have inexplicable post-infection symptoms like excessive weariness, he believes that patient groups are crucial.

One of the issues, according to Davids, is that patients only have access to these frequently volunteer-based patient support groups. The groups are crucial for patients, but, according to him, they must be a part of an all-encompassing care strategy.

Online support groups may also provide false information and untested cures. Doctors and advocates claim that some group members approach them seeking information on miracle treatments and supplements.

Many of his COVID patients, according to Dr. Alexander Truong of Emory University in Atlanta, have purchased pricey but ineffective vitamins and supplements after reading about them online.

During a live online forum held by SciLine, a division of the American Association for the Advancement of Science, he remarked, “A lot of these people are grabbing at straws to try to find out anything that will help them feel better and they are very vulnerable to this sort of scam.”
Another concern is privacy. In open Facebook groups, thousands of people submit information about their lives and health. Facebook users who are logged in can read the posts.

A Datatrove of Treasures

Researchers may benefit from the analysis of these confidential patient interactions for important information. The idea is the foundation of the group Patients Like Me, which was established in 2005 to assist families affected by ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease).

Long COVID patient groups are already being used by researchers at Yale and other institutions. Based on posts made on the site, three COVID databases are available through Facebook’s Data for Good programme. One of the first studies to characterise extended COVID used data from the Patient-Led Research Collaborative and was published in The Lancet.

Facebook group administrators must “get user consent for your use of the content and information that you gather,” according to the site’s guidelines. However, the website has been fighting “unauthorised scrapers” who take information from Facebook and repost it.

With around 200,000 members, the Survivor Corps group is the biggest long COVID Facebook group and is open to the public. Any post can be read by anyone. Anyone in into Facebook can view any group members who have just one common contact by selecting the “People” option.

Diana Berrent, a photographer from New York who contracted COVID-19 early in the pandemic, founded the Survivor Corps Facebook group and its sister website and contributes to both of them. She speculates that where a person already spends their online time may have an impact on their choice of support group.

She adds, “And I don’t view it as a privacy concern.” It truly just depends on which platform you feel most at ease using.

Along with conducting surveys, Berrent has collaborated with scientists from Yale, the National Institutes of Health, and other institutions.

Despite the potential value of the data on her website, Berrent claims to have rejected purchase bids.

She also claims that the grant money she received from the Chan Zuckerberg Initiative and the Bill & Melinda Gates Foundation when she first started her work has run out. She doesn’t want to solicit money from the members of the support group. She claims to have the resources to support both a full-time and a part-time employment.

According to the group moderators, funding for this project is scarce. And this dependence on finance can be a weakness. Some reputable patient organisations with expertise in a variety of illnesses get funding from the pharmaceutical industry. Corporate sponsors, however, are hard to come by because extended COVID has no commercial cure.

That might result in a desire for money. “Let’s face it, we have a serious financial problem. Without funding, we predict Body Politic will no longer exist by the beginning of 2023 (GOAL: $500k),” Body Politic stated in an Instagram post at the beginning of November.

We could use more connections and information on potential partners because our team is looking for private contributors, foundations, and strategic partners.

Body Politic and similar organisations claim they require funding to work with leaders in the government and healthcare, recruit more moderators, pay for subscriptions to ever-more-powerful software, represent patients’ interests, provide public education, and hire more moderators.

The Battle to Stay Ahead

Having a group over can require a lot of work. When COVID-19 surfaced, Florida nurse Laney Bond says she created a Facebook group to aid other nurses. Bond, who had previously received treatment for mast cell activation syndrome, a condition that can result in allergic reactions, began to have long-term COVID symptoms like cardiac issues and cognitive fog.

Bond claims that she became interested in sharing the evidence-based information she had gathered on post-viral sickness after noticing online discussions of long-term COVID patients who had comparable symptoms.

I simply created a group for folks in the hopes that the knowledge and my experience will ease their journey, she claims.

With 95,000 people joined up for her COVID-19 Long Haulers Support group, Bond is already having difficulties keeping up. She also manages a website where she shares condensed COVID-19 information that she obtains from the National Institutes of Health.

Bond works a day job and is a volunteer. She claims to have no other financing sources and only earns about $10 per month from Google advertisements on the website she manages in addition to the Facebook page. She now has support on the moderating.

She says, “It’s too much, but I try.” To assist, Facebook has offered certain moderator tools.

A New Era of Protest

The involved patient, or someone who plans their own care with their doctors, has emerged as a result of the internet. David Putrino, PhD, a physical therapist and professor at the Icahn School of Medicine at Mount Sinai in New York City, says in a Perspective for Medscape, WebMD’s sister site for medical professionals, that the involved long COVID patient is ushering in “a new age of advocacy.”

He says that “such groups are advancing extraordinarily thorough scientific and clinical research, and doing so at an unparalleled pace.”

People with chronic conditions need support from other patients, but it must be combined with high-quality medical care and support services, according to activists.

Davids claims that the Slack channel called Body Politic, where 11,000 users gather in private, is where he spends the most time. He values the fact that a person, not an algorithm, selects the posts he views. He also believes Body Politic is well-moderated, something he and others advise patients to take into account before joining a group.

Support groups ought to be controlled. As a support group participant, you could inquire about the moderators’ training. How do you know they have the necessary tools to control the area? He asks.

According to Berrent, the Survivor Corps page is “highly, heavily, monitored.” According to her, users “cannot declare a scientific fact unless they link to a credible source.” Politics and giving medical advice are off limits, but they are allowed to discuss what has been helpful to them.

According to Davids, group conflict may be a cause of agitation and may have negative effects. He advises patients to join a few groups and see what transpires when conflicts arise.

“How is it dealt with? Are you comfortable with it? Does it make your heart race—something you most definitely don’t need—he asks. Davids’ Long COVIDJustice website has a list of his top picks for organisations.

Before the pandemic, the Body Politic group was started as a wellness collective, but when Lowenstein and another member fell ill in 2020, the group changed into a lengthy COVID group. They claim they looked all over and couldn’t get assistance.

Lowenstein, who no longer oversees the group due to mild symptoms, concurs that patient support groups should be well-moderated. Additionally, Lowenstein feels that they should only be available to individuals with lengthy COVIDs and is concerned that journalists and others interested in COVID may linger on the public sites.

For persons with lengthy COVID, “it’s not a particularly private or safe-feeling area,” according to Lowenstein.

Facebook has intervened in COVID communities in a few ways, including a search for members who are struggling. Bond, who oversees the COVID Care Group, claims that earlier this year, Facebook vetted her and shared some moderator tools with her, including a red flag for posts that seem to be a suicide suggestion. Bond claims that she performed 20 suicide interventions for long-term COVID patients last year.

Facebook and Instagram’s parent company, Meta, has regulations about COVID and vaccination disinformation. According to the firm, it has taken down over 3,000 profiles, pages, and groups as well as 27 million pieces of material from Facebook and Instagram feeds due to infractions.

However, the comments and posts keep coming in. Many of Christian Sandrock, MD’s long-term COVID patients, according to the director of critical care at University of California Davis, get information on Facebook.

“What we really say is that if someone is saying this absolutely works, this is wonderful, it is a quick remedy, we nearly say it as an absolute,” During the SciLine briefing, he urged, “Don’t go along. “We are aware of the complexity of this illness. We are aware that we lack solid solutions.

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