Influencers profiting from false information about women’s health in Brazil and around the world

Influencers around the world are posing as medical experts and exploiting the lack of easy solutions for polycystic ovary syndrome, or PCOS, by selling fake treatments and unscientific cures, BBC World Service research reveals.

For 12 years Sophie had suffered from painful periods, weight gain, depression and tiredness.

She was diagnosed with polycystic ovary syndrome (PCOS), a hormonal condition that affects, on average, one in 10 women.

After receiving the diagnosis, he had difficulty getting medical advice.

Sophie felt her only option was to take care of her health on her own. And that’s when Kourtney Simmang appeared on Instagram.

Kourtney promised to treat the “root cause” of PCOS, although researchers have yet to identify one. He offered clients laboratory tests, a “health protocol” – a diet plan and supplements – and coaching for $3,600 (R$22,300).

Sophie signed up, paying hundreds of dollars more for the supplements, through links to Kourtney’s partner stores.

Jen Gunter, a gynecologist and women’s health educator, said Kourtney was not qualified to order the tests she was selling and that they had limited clinical use.

After nearly a year, Sophie’s symptoms weren’t improving, so she gave up on the treatment Kourtney offered.

“I left the program with a worse relationship with my body and food, [sentindo] that I didn’t have the ability to improve my PCOS,” she said.

When contacted, Kourtney did not respond to questions raised by the report.

Medically unqualified influencers, many with more than a million followers, are exploiting the lack of an easy medical solution for PCOS by posing as experts and selling fake cures.

Some describe themselves as nutritionists or “hormone coaches”, with qualifications that can be completed online in a matter of weeks.

The BBC World Service tracked the most viewed videos with the hashtag “SOP” on TikTok and Instagram, in four languages, during September, and found that half of them spread false information. We analyze the 25 best videos in English, Swahili, Hindi and Portuguese. Many of the English videos also had large audiences in India, Nigeria, Kenya and Brazil.

The ladder

According to the World Health Organization (WHO), up to 70% of women with PCOS worldwide have not been diagnosed. And even when diagnosed, women have difficulty finding treatments that work.

“Whenever there is a gap in medicine, predators take advantage of it,” Gunter said.

The main one false or misleading information shared by these influencers include:

• “PCOS can be treated with dietary supplements”;
• “PCOS can be treated with a diet, such as the high-fat, low-carb ketogenic diet”;
• “Birth control pills cause PCOS or make symptoms worse”;
• “Traditional medicines can suppress PCOS, but they don’t treat the ‘root cause’.”

There is no evidence that highly low-calorie diets have any positive effects, and the ketogenic diet could make symptoms worse, experts say.

The birth control pill does not cause PCOS and in fact helps many women, although it does not work for everyone. There is no known root cause for PCOS.

A TikTok spokesperson said the company does not allow content on the platform that is misleading, false or could cause significant harm.

A Meta spokesperson said user content about women’s health is allowed on the platform without “any restrictions.” The company said it has worked with third parties to debunk other health misinformation.

What is PCOS?

Global problem

The BBC spoke to 14 women from Kenya, Nigeria, Brazil, the UK, the US and Australia who tried different products promoted by the influencers.

One of them was Vaishnavi, from Bangalore, India. He put his trust in Indian influencer Aanya Sharma, who promotes “natural” treatments such as diet and detox programs.

Like many other influencers, Aanya places a huge emphasis on weight loss.

Following Aanya’s diet, Vaishnavi was asked to eat between 1,000 and 1,200 calories a day.

A healthy diet can help manage PCOS symptoms, but this extreme restriction can easily lead to eating disorders. The UK’s National Health Service recommends that a woman consumes an average of 2,000 calories a day.

Vaishnavi’s periods stopped for six months, a common side effect of eating so little. But she didn’t lose weight as quickly as she was promised, which made her deeply ashamed.

“All of his other clients with PCOS have lost a lot more weight than I have,” she said. “You think it might finally be like this, it works for everyone, so I will have great results too, and somehow you are always the exception.”

Aanya Sharma has said that PCOS symptoms can be reversed, but she does not claim that there is a cure. And he said he encourages a healthy lifestyle for his customers.

Manisha, also from Bangalore, fell into a similar trap.

Like Sophie, she turned to influencers after struggling to get help from doctors to address her concerns about body hair, weight gain, menstrual cramps and possible infertility.

“Women I know have had failed marriages because their families found out they had PCOS and thought they couldn’t get pregnant,” she said. “I desperately wanted a cure.”

She tried fad diets like extreme fasting and the ketogenic diet, which was especially difficult for her as a vegetarian. He also bought supplements that promised a “miracle cure.”

One of these was Ashwaganda, a traditional Indian Ayurvedic supplement. The influencers discouraged her from taking Western medications, saying they “only masked the symptoms of PCOS.”

But the diets and “treatments” only made his pain and other symptoms worse.

“At one point, I had suicidal ideation. How could all these methods work for everyone else but me?” he said. “It was useless.”

Manisha returned to the doctor. At the age of 29, she was diagnosed with type 2 diabetes. According to experts, this could have been avoided if she had previously taken metformin, a drug used for PCOS and the prevention of diabetes.

Because many women with PCOS have insulin resistance, meaning they have difficulty processing sugar, they are at a much higher risk of developing type 2 diabetes.

Manisha said the first time she tried to undergo treatment for PCOS, she was not taken seriously and was told to come back when she wanted to get pregnant.

Gunter said this is a vulnerable group of patients who may face feelings of helplessness without access to care. He said misinformation led patients to often delay seeking medical help and that this could lead to the development of other conditions such as type 2 diabetes.

In Nigeria, medical student Medlyn is trying to address some of the stigma surrounding PCOS.

After trying diets and supplements without success, she now encourages other women to consult their doctor and adopt evidence-based treatments.

“When you’re diagnosed with PCOS, it comes with a lot of stigma. People think you’re lazy, that you don’t take care of yourself, that we can’t get pregnant,” she says. “So no one wants to date you, no one wants to marry you.”

But now he is accepting some of the characteristics of PCOS. “It’s been a difficult journey understanding my PCOS, my body hair, my weight,” she said. “These things make me different.”

Sasha Ottey, of the British charity PCOS Challenge, says medical treatment often allows people with the condition to become pregnant.

“Women with PCOS have the same number of children as those without,” she added. “You might need a little help getting there.”

Gunter says women who don’t get help from a general practitioner should see a specialist.

“Some women need a trusted endocrinologist or obstetrics and gynecology specialist for the next level of management.”

After receiving medical support, Manisha started taking metformin, which improved some of her symptoms. He hopes his type 2 diabetes goes into remission.

Vaishnavi is improving her exercise routine and Sophie is working with a qualified nutritionist who is helping her lose weight. Both continue to explore treatments with doctors and hope it works.

Source: Terra

Ben

Ben Stock is a lifestyle journalist and author at Gossipify. He writes about topics such as health, wellness, travel, food and home decor. He provides practical advice and inspiration to improve well-being, keeps readers up to date with latest lifestyle news and trends, known for his engaging writing style, in-depth analysis and unique perspectives.