Influencers Peddle Unverified Treatments for Polycystic Ovary Syndrome

For 12 years, Sophie had endured painful periods, weight gain, depression, and fatigue. She had received a diagnosis of polycystic ovary syndrome (PCOS), a hormonal disorder affecting approximately one in 10 women, yet she encountered difficulties in obtaining medical assistance. Feeling that her only recourse was to manage her health independently, she discovered Kourtney Simmang on her Instagram recommendations. Kourtney asserted she could address the “root cause” of PCOS, despite researchers not having identified one. She offered clients laboratory tests, a “health protocol”—comprising a diet and supplement regimen—and coaching for $3,600 (£2,800). Sophie enrolled, spending hundreds of additional dollars on supplements acquired through Kourtney’s affiliate links. Dr. Jen Gunter, a gynaecologist and women’s health educator, stated that Kourtney lacked the qualifications to order the tests she was marketing, and that these tests possessed limited clinical utility. After nearly a year, Sophie’s symptoms had not improved, prompting her to abandon Kourtney’s purported cure. “I left the programme with a worse relationship to my body and food, [feeling] that I didn’t have the capacity to improve my PCOS,” she recounted. Kourtney did not provide a response to requests for comment. Medically unqualified influencers—many boasting over a million followers—are capitalizing on the absence of a straightforward medical solution for PCOS by presenting themselves as experts and marketing fraudulent remedies. Some identify as nutritionists or “hormone coaches,” but these certifications can be obtained online within weeks. The BBC World Service monitored the most-viewed videos featuring a “PCOS” hashtag on TikTok and Instagram during September and ascertained that half of them disseminated inaccurate information. Globally, up to 70% of women with PCOS remain undiagnosed, according to the World Health Organization (WHO), and even after diagnosis, women struggle to locate effective treatments. “Whenever there’s a gap in medicine, predators take advantage,” Dr. Gunter remarked. The primary false or misleading assertions disseminated by these influencers include: There is no evidence that highly restricted calorie diets yield any positive effect, and the keto diet might exacerbate symptoms. Birth control pills do not induce PCOS and, in fact, assist many women, though they are not universally effective. There is no identified root cause for PCOS, and no cure exists. A spokesperson for TikTok affirmed that the company prohibits misleading or false content on its platform that could inflict significant harm. A Meta spokesperson indicated that user-generated content concerning women’s health is permitted on the platform with “no restrictions.” The company stated it collaborated with third parties to refute health misinformation. The BBC interviewed 14 women from Kenya, Nigeria, Brazil, the UK, US, and Australia who experimented with various products promoted by influencers. Almost all mentioned Tallene Hacatoryan, who commands over two million followers across TikTok and Instagram. A registered dietician, Tallene sells supplements for $219 (£172) and grants access to her weight loss application for $29 (£23) monthly. She cautions individuals against pharmaceuticals such as the birth control pill or the diabetes medication metformin, both of which have been found beneficial for numerous women with PCOS. Instead, she encourages her audience to heal “naturally” with her supplements. She places considerable emphasis on weight and what she terms “PCOS belly,” referring to adipose tissue around the abdomen. Amy from Northern Ireland chose to implement some of Tallene’s recommendations after encountering difficulties in securing assistance from her general practitioner. “PCOS belly was exactly where my insecurities were,” she conveyed. Tallene’s counsel involves reducing gluten and dairy. However, while a nutritious diet can alleviate PCOS symptoms, there is no evidence suggesting that gluten and dairy have a detrimental impact. In Amy’s situation, she found it challenging to eliminate gluten and dairy products. “It makes you feel like you failed,” she stated. “Looking back, I wasn’t as heavy then, but these people would make me feel worse, and you’d want to do more diets, or buy more supplements.” Dr. Gunter informed the BBC that influencer diet plans of this nature could “absolutely create an eating disorder.” Tallene informed the BBC that the supplements she markets adhere to the highest standards of safety and quality. She asserted that she does not discourage the use of pharmaceuticals but provides “evidence-based information about their potential benefits and side effects.” She further added that her methodology emphasizes self-compassion and body positivity and that it has “positively impacted thousands of women.” Amy reported that her GP had proposed hormonal birth control to manage her symptoms but offered no other treatment alternatives. She was advised to return if she wished to conceive in the future. Dr. Gunter characterized this as a vulnerable patient demographic that may experience feelings of helplessness without access to treatment. She noted that misinformation frequently caused patients to postpone seeking medical help, which could lead to the development of additional conditions, such as type 2 diabetes. In Nigeria, Medlyn, a medical student, is endeavoring to address some of the stigma associated with PCOS. After attempting diets and supplements without success, she now advises other women to consult their physicians and adopt evidence-based treatment. “When you’re diagnosed with PCOS it comes with so much stigma. People think you’re lazy, you don’t look after yourself, that we can’t get pregnant,” she explained. “So nobody wants to date you, nobody wants to marry you.” Nevertheless, she is now embracing certain aspects of her PCOS. “It’s been a hard journey to accept my PCOS, my hair, my weight,” she shared. “These things make me different.” Sasha Ottey of the US-based charity PCOS Challenge stated that medical intervention typically enables individuals with the condition to achieve pregnancy. “Women with PCOS have the same number of children as those without,” she affirmed. “You just might need a bit of help getting there.” Dr. Gunter recommended that women who are not receiving adequate assistance from a general practitioner should request a referral to a specialist. “Some women need a trusted endocrinologist or a trusted obstetrics and gynaecology specialist for that next level of management.” Sophie and her medical team continue to explore potential treatments, seeking an effective solution for her. 12 December 2024: This article was updated to incorporate a response from Tallene Hacatoryan, which was submitted after the initial publication of the story. The narrative was also modified to remove a statement indicating that Ms. Hacatoryan had advocated for the keto diet as a PCOS treatment. BBC 100 Women annually recognizes 100 inspiring and influential women globally. Follow BBC 100 Women on Instagram and Facebook. Engage in the discussion using #BBC100Women. Copyright 2024 BBC. All rights reserved. The BBC bears no responsibility for the content of external websites. Information regarding our approach to external linking is available for review.