How people get sucked into bogus medicine – The Australian Financial Review

Healthier algorithms

As links between anti-vaccination conspiracy theories and measles outbreaks in the US became major news, Facebook announced this month that it was taking steps to limit the reach of these false and sometimes dangerous claims by treating them as similar to clickbait or spam. Google has also started taking more aggressive action against medical misinformation on its platforms, where it thrived for years.

Facebook says it will “down-rank” posts that it believes contain health misinformation, meaning those posts will appear in the news feeds of fewer users, and less prominently. The down-ranking will also apply to some posts from Facebook groups devoted to natural treatments, which will show up less often in the news feeds of group members.

The down-ranking process will use key words and phrases that commonly appear in posts containing exaggerated or false health claims, but which tend not to appear in posts containing accurate information on those topics. Facebook’s News Feed algorithms will use those suspicious phrases, which the company has identified with the help of health-care professionals, to predict which posts might contain sensational health claims.

“Misleading health content is particularly bad for our community,” Travis Yeh, a Facebook product manager, wrote in a blog post. “So, last month we made two ranking updates to reduce (1) posts with exaggerated or sensational health claims and (2) posts attempting to sell products or services based on health-related claims.”

But these measures alone won’t eradicate bogus health information. Health conspiracy theories and false cures have polluted social media for years, abetted by companies who have been more focused on building out the plumbing than keeping the pipes clean of misinformation.

The result of so much health misinformation has been a long period during which seekers, ushered by algorithms, found themselves immersed in wells of dubious advice and conspiracy thinking. They soaked in the wisdom they found there, and carried it into their own networks by the bucketful. In this way, the proliferation of bogus medical science in the internet age resembles a public-health crisis: the harm can be hard to calculate, and remedies cannot undo the damage already done.

Even as YouTube patches “cure for cancer,” medical misinformation remains available and popular in other ways.

In late April, when I searched YouTube with the string “cure for cancer” among the top results was a video with more than 1.4 million views, that claimed that baking soda could cure cancer. Another was an interview with self-described cancer expert Leonard Coldwell, in which Coldwell explains that every cancer can be cured in weeks with a special diet that “alkalises” the body, a claim that has been debunked by scientists. The video has more than 7 million views. (In an emailed statement, a spokeswoman for Coldwell identifying herself as Danielle claimed that Coldwell, who no longer treats patients, had the “Highest Cancer Patient Cure Rate in the world”, and boasted that Coldwell remained popular despite being “the most blocked Cancer Patient Expert in the world”.)


YouTube’s efforts to plug the holes that lead to videos like the Coldwell interview are having some effect. When I ran the “cure for cancer” search again, in May, YouTube’s search results were a completely different story. The baking soda and Coldwell videos are still online, but no longer appear among the top pages of results. Instead, most of the top results came from major cancer research centres.

Even as YouTube patches “cure for cancer”, medical misinformation remains available and popular in other ways. People who are susceptible to cancer misinformation aren’t just typing key words into YouTube. They’re also turning to fellow travellers who followed the same algorithmic tunnels to the same wells, where communities members who have never met in person swap folk remedies and discuss the untrustworthiness of cancer doctors and pharmaceutical companies.

For those facing a battle with a terrifying illness, hopeful anecdotes can be powerful.

It’s tempting to think of medical misinformation as a technological problem in need of a technological solution, but that’s only part of it. The social media age has made humans part of the infrastructure of the internet. And when it comes to medical information, it’s not just algorithms that direct online seekers who are trying to figure out how to cope with a bad diagnosis. It’s also other people.

For those facing a battle with a terrifying illness, hopeful anecdotes can be powerful. Anecdotes can turn seekers into believers, who can turn other seekers into believers. And on Facebook, those anecdotes continue to attract large audiences.

On Facebook, I easily found groups devoted to sharing “natural” cures for cancer, where people who have cancer diagnoses, or care for someone who does, asked other group members for ideas for how to cure it. “Cancer Cures & Natural Healing Research Group” has just under 100,000 members. I joined the closed group in February, identifying myself as a journalist to the administrators.

Some people claim drinking hydrogen peroxide is a cure for disease. AP

The administrator for that group initially agreed to speak with me in private messages. But then I was blocked from the group and the administrator’s personal Facebook page. (The administrator did not return a follow-up email seeking comment.)

Facebook’s algorithms then began suggesting other groups I might like to join: “Alternative Cancer Treatments” (7000 members), “Colloidal Silver Success Stories” (9000 members) and “Natural healing + foods” (more than 100,000 members). I requested access to some of those groups, too, and several admitted me. People in the groups would ask one another for cancer-fighting advice. Some would be told to use baking soda or frankincense.

Rather than remove the groups, Facebook’s strategy to limit health misinformation centres on making it harder to join them unknowingly. Facebook said in an emailed statement that it “will alert group members by showing Related Articles” for any post already deemed false by Facebook’s third-party fact-checkers, for instance.


Facebook is experimenting with how to address health misinformation beyond vaccines. One possibility might be alerting users who are invited to join a group that it has circulated debunked hoaxes.

To this point, it’s been up to users to steer their peers towards or away from bad health advice. In one Facebook group, in February, a parent asked for advice on how to cure a child’s strep throat without antibiotics. The responses were split; some told the parent not to mess around and go to the doctors for antibiotics; others recommended colloidal silver and hydrogen peroxide. The National Capital Poison Centre notes that even food-grade hydrogen peroxide “should never be taken internally” unless extremely diluted, and that its use as an alternative therapy is “not based on scientific evidence”.

The world of alternative medicine-seekers has its own celebrities. The names are like pass phrases. Post a question about natural cancer treatments in the right Facebook group, and you’ll get the names of supposed success stories that the pharmaceutical industry doesn’t want you to know about, and the instruction to “do your own research” into their stories.

After I was kicked out of the “Cancer Cures and Natural Healing Research Group”, I joined the similarly named “Natural Healing & Cancer Cures Research Group”, a closed Facebook group with more than 40,000 members. (Again I identified myself as a journalist while joining the group.)

Rejecting conventional treatment

That’s where I saw a post by Beth Anne Rakowski, who said her sister was sick with Stage 3 lung cancer. “She and I both agree,” Rakowski wrote, “NO chemo or radiation. I called Rakowski to find out why.

Cancer has haunted Rakowski for much of her adult life. She wanted to be a nurse, but when her young son got cancer she dropped out of nursing school. When he died in 1992, at age four, Rakowski felt like she had died with him. Grief became activism, and she started raising money for charities that helped pay for cancer research. Later, her brother-in-law and her father were diagnosed. They died, too.

She believed she could heal her sister’s lungs with fenugreek, licorice root, peppermint oil and oregano oil.

Rakowski had health issues of her own, and on the advice of a friend she visited two naturopathic doctors. When their practices closed (Rakowski blames Big Pharma), she started seeking out remedies online. She found Facebook groups full of them.


“I used Facebook health groups just full-speed ahead,” Rakowski tells me in a phone interview from her mother’s home, where she is a full-time carer, “and I couldn’t believe what resources were on there. People help other people because they’ve been there.” The Facebook groups were Rakowski’s lifeline.

She came to believe that chemotherapy, not cancer, had killed her son, father and brother-in-law. “Talk about parental guilt and remorse,” Rakowski tells me.

Now, every sick relative is a chance for redemption. She advised her sister against chemotherapy or radiation to treat her lung cancer. Rakowski wants her to use “naturals” and “immunotherapy” instead. And so she turned to her lifeline: the other members of the Natural Healing & Cancer Cures Research Group.

“If you can please give me a list,” she wrote in a post on the Facebook group, “in order of urgency and priority, of what you feel is imperative for nutrition, immune boosting, cancer killing, and whatever else you feel my sister needs.”

The responses flooded in by the dozens: salt water baths four times a day; B17 vitamin … CBD oil full spectrum; add wheatgrass juice to your sister’s diet.

Rakowski’s sister trusted her doctors: She had chemotherapy. Then she got an infection in her lungs, says Rakowski, and in March her doctors said it was time to enter a hospice. But Rakowski still had hope. She says she convinced her sister to wait on the hospice, and went to a health food store that evening and bought a small fortune’s worth of essential oils.

She believed she could heal her sister’s lungs with fenugreek, licorice root, peppermint oil and oregano oil. Once her sister’s lungs were better, Rakowski believed, she could get to work curing her cancer.

Even for patients with terminal diagnoses, traditional medicine can offer palliative care that can manage the pain.

In May, Rakowski wanted me to know that she believed her sister was a miracle. Once the infection had subsided, she texted to say the doctors had offered to start her sister on chemotherapy again. “My sister declined,” she wrote, and decided to continue with “natural supplements and natural oils”.

When Rakowski and I talk about health, it sometimes feels like we are talking about faith. The story she tells about her sister’s illness is meant as a parable about how chemotherapy can kill. She saw me, and the readers of this article, as potential converts.

I told Rakowski that I believed the groups she depended on exploited people’s desire for hope in the face of a bleak prognosis. When there are no options left, it’s powerful to find a community that tells you otherwise, even if those options turn out to be ineffective or even harmful.

But each time I challenge her with a counterpoint, Rakowski waves it away. The government is covering up evidence that supports her views, she tells me. The treatments she found on Facebook worked for her, she believes, and that is all the proof she needs.

As a surgical oncologist, Dr David Gorski sees the effect that medical misinformation can have on the body. A couple of times a year, he says, he’ll treat patients with neglected cancers, who try to treat their cancers naturally before turning to medicine. The tumours have become nasty ulcerating masses. Even for patients with terminal diagnoses, traditional medicine can offer palliative care that can manage the pain and may be covered by health insurance.

After years of allowing health misinformation to spread, social media companies are beginning to treat the problem the best they can. They didn’t create cancer conspiracy theories, but experts like Gorski have observed how they made the problem worse. “It’s just way more concentrated and effective,” he says. “You go on Facebook and type in ‘alternative cancer cures’ and you’ll find stuff real fast.”

Washington Post

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