Fear of parasites have led thousands of people to post pictures of their own feces in a private Facebook group and then pursue a range of remedies proposed by other group members that medical experts consider unsubstantiated by scientific research and potentially dangerous.
The posts are another example of the wide variety of health misinformation that can be found on Facebook, and add to the pressure on the social media giant to rein in such misinformation, if not ban it outright.
The posts in these groups follow a clear pattern: A member writes about a perceived health condition or symptoms along with any regimen they’re undergoing. Then, in the first comment, the member usually follows up with a photo of what they claim is their poop.
These people are all convinced that their bodies are littered with parasites.
“What is this? It feels like a slug. It is at least 2 inches long and it is the only thing that came out. Pic in comments,” reads a recent post in the Humaworm Parasite Removal & Natural Health Group, which has 33,000 Facebook members.
Humaworm is just one of many Facebook groups in which people come together to share and diagnose what they claim are parasitic infections. The groups also share a variety of treatments that are not backed up by science.
One private group with 1,300 members, called “Parasites cause all Disease,” promotes drinking turpentine to cure ailments.
Parasites, which are organisms that live on or in a host that also serves as its food source, are a legitimate health concern and can cause diseases such as malaria, toxoplasmosis and Chagas disease. But the claims made by Humaworm and other parasite groups — that 90 percent of Americans are hosts to parasites that are making them seriously ill — are drastically overstated, according to data from the Centers for Disease Control and Prevention.
And while these groups have been under pressure from authorities, including a recent raid by federal agents on the business behind the Humaworm group, they have so far been successful in sidestepping Facebook’s broader crackdown on health misinformation in part by adapting to new rules, including the use of coded phrasing such as “fairy tales” in an attempt to portray their activities as works of fiction.
The group’s members, however, clearly take the topic seriously. Many of the posts come from parents looking for ways to treat what they believe are parasites in their children.
“What is a safe way to start a 5 year old on a parasite treatment/cleanse?” one mother posted this week.
In the last year, health advocates and lawmakers have been increasingly critical of social media platforms including Facebook and YouTube for hosting and recommending content that spreads health misinformation.
While Facebook has made moves to downrank anti-vaccination pages and provide warnings on pages and groups that push vaccine misinformation, they’ve stopped short of banning accounts that promote such content. This summer, Facebook said it would reduce the reach of posts with “exaggerated or sensational health claims” but have declined to act on groups that promote potentially dangerous cure-alls.
Facebook did not respond to questions concerning the Humaworm community, but groups promoting similar products of questionable safety have been removed for violating Facebook’s rules on “nonmedical drugs,” which forbid content that promotes drug sales or describes personal drug use outside of recovery.
But the specter of a ban hangs over the groups, an indication that Facebook’s crackdown has forced these groups to change how they work.
Federal agents executed a search warrant last month at Humaworm’s headquarters in Carrollton, Mississippi, a business from which Reba Bailey, 48, made and sold homemade herbal pills that she claimed could cleanse the body of parasites and treat nearly every illness — from headaches to cancer. Agents confiscated equipment, herbs, and computers, according to Bailey’s social media posts.
The raid drove Bailey to make the Humaworm group private.
“ANNOUNCEMENT: HUMAWORM IS CLOSED AS OF TODAY,” Bailey posted to her then-public group. “I can’t talk about why. I WILL BE HIDING THIS GROUP.”
Following the October raid, Bailey changed the name of her Facebook group from Humaworm Parasite Removal & Natural Health Group to Parasites & Natural Health, and she and her group members have started referring to specific herbal recipes as “fairy tales” to evade what they fear is a forthcoming Facebook ban, according to posts viewed by NBC News.
“Is there a fairy tale goldilocks porridge recipe for Lyme in a five yr old or nursing mom?” one member asked after Bailey released the recipes for several other herbal remedies.
Many of the posts in Bailey’s group are not from people seeking advice for themselves, but from parents looking for ways to treat what they believe are parasites in their children.
“Omg my 5 month old just passed about 50 worms ???? how can a baby that young pass so many and have so many!” another posted in the Humaworm group, along with a photo of a dirty diaper.
Many of the comments suggested that solutions offered by Humaworm are meant to “detoxify” the baby, while other replies advised the mother to stop feeding her child bananas.
One responded, “It’s just baby poop.”
Bailey did not answer requests for comment sent through email and FB message, and a message left at the company phone number was not returned. A GoFundMe campaign for Bailey’s living expenses has raised $3,500, and she has quickly written a book of recipes for her products that she’s selling for $39.99.
The FDA declined to comment on the raid “as a matter of policy,” according to a spokesperson.
The internet provides a wealth of information and connectivity for the sick and their doctors. But for people who are overly anxious, isolated or hopeless about symptoms that doctors have been unable to name or treat, online diagnoses and involvement in social media groups like those dedicated to parasite cleanses on Facebook can increase their fears, a phenomenon known as Cyberchondria.
The misguided belief that one’s body is being overrun by worms also has a name: delusional parasitosis.
Posts in the parasite Facebook groups document the effects of many of the suggested remedies. Humaworm and other non-FDA-approved “miracle” parasite cures have caused general pain, rashes, headaches, fevers, heart irregularity and flu symptoms, according to posts seeking confirmation that these are symptoms of parasite “die-off.” They claim the negative effects are actually a positive sign, triggered by the dying parasites.
“These types of cures are things we used to see before medical knowledge or research,” said Jennifer Grygiel, an assistant professor and social media researcher at the S.I. Newhouse School of Public Communications at Syracuse University. “The news media environment is degrading so badly that we’re digressing backwards, toward medieval times.”
“People are reading less about medicine from journalists or medical professionals,” Grygiel said. “It’s not even Doctor Google anymore. People are becoming more reliant on social media, and Facebook is reaping the benefits.”
The group’s move to become hidden also poses challenges for those trying to find and address health misinformation online.
“Groups can become private or hidden at any time, making it hard for journalists and researchers to show what is happening on Facebook,” Grygiel said. “And that’s strategic on Facebook’s part.”
Side effects aside, using a photo on Facebook to diagnose a parasitic infection is unreliable, said Dr. Benjamin Levy, the division head of gastroenterology at Mount Sinai Hospital in Chicago.
“Appearance of stool is helpful when trying to determine hydration status,” Levy said. But people concerned about parasites “should go see a doctor and have the physician order stool testing, where a lab can look at the sample under a microscope.”
Levy offered a warning about enemas, supplements and other at-home remedies promoted by group members.
“Depending on the device or the substance used, you can cause irritation or abrasions and you may be sloughing off skin or mucosa and exacerbating hemorrhoids,” Levy said. “In 2019, we have great medications that have been studied and deemed safe. My advice would be to seek medical care before going on the internet for solutions.”