Influencers selling fake cures for polycystic ovary syndrome

Kourtney Simmang, a well-known influencer, has been promoting unproven tests and supplements aimed at women suffering from polycystic ovary syndrome, commonly referred to as PCOS. This hormonal condition affects approximately one in ten women and can lead to a variety of symptoms, including painful periods, weight gain, depression, and fatigue. Sophie, a woman who had been grappling with these symptoms for over a decade, found herself at a crossroads when she discovered Kourtney on her Instagram feed. Desperate for relief and feeling frustrated with the lack of medical support, Sophie decided to invest in Kourtney's program, which promised to address the 'root cause' of PCOS, despite the fact that researchers have yet to identify such a cause. Kourtney's program included laboratory tests, a health protocol consisting of a diet and supplement plan, and coaching, all for a hefty price of $3,600. Sophie ended up spending even more on additional supplements through Kourtney's affiliate links. However, after nearly a year of following the program, Sophie found that her symptoms had not improved at all. In fact, she felt worse about her relationship with her body and food, stating, 'I left the program with a worse relationship to my body and food, feeling that I didn’t have the capacity to improve my PCOS. ' Kourtney did not respond to inquiries regarding Sophie's experience. The rise of medically unqualified influencers, many boasting over a million followers, has become a concerning trend as they exploit the lack of straightforward medical solutions for PCOS. Many of these influencers label themselves as nutritionists or 'hormone coaches,' but these titles can be obtained online in a matter of weeks without any formal medical training. The BBC World Service conducted an investigation into the most popular videos tagged with 'PCOS' on platforms like TikTok and Instagram, revealing that half of these videos contained false information. Influencers often promote a 'supplement routine' that claims to reverse PCOS, but these claims are misleading. According to the World Health Organization, up to 70% of women with PCOS worldwide remain undiagnosed, and even those who are diagnosed often struggle to find effective treatments. Dr. Gunter, a gynecologist and women's health educator, emphasized that 'whenever there’s a gap in medicine, predators take advantage. ' The misleading claims made by these influencers include assertions that PCOS can be cured with dietary supplements or specific diets, such as the low-carbohydrate high-fat keto diet. They also suggest that birth control pills either cause PCOS or worsen its symptoms. While mainstream medications may help manage PCOS, they do not address any supposed 'root cause. ' There is no scientific evidence supporting the idea that highly restricted calorie diets have any positive effects on PCOS, and in fact, the keto diet may exacerbate symptoms for some women. Birth control pills do not cause PCOS; rather, they can be beneficial for many women, although they are not effective for everyone. The reality is that there is no known root cause for PCOS, and currently, there is no cure. A spokesperson for TikTok stated that the platform does not permit misleading or harmful content, while Meta, the parent company of Instagram, mentioned that user-generated content related to women's health is allowed without restrictions. They also claimed to consult with third parties to debunk health misinformation. The BBC spoke to 14 women from various countries, including Kenya, Nigeria, Brazil, the UK, the US, and Australia, who had tried different products promoted by influencers. Nearly all of them mentioned Tallene Hacatoryan, an influencer with over two million followers across TikTok and Instagram. Tallene sells supplements for $219 and offers access to her weight loss app for $29 a month. She warns her followers against using pharmaceuticals like birth control pills or the diabetes drug metformin, both of which have been found helpful for many women with PCOS. Instead, she promotes her supplements as a 'natural' way to heal. Amy, a woman from Northern Ireland, followed some of Tallene's advice after struggling to find help from her doctor. She felt insecure about her body and was drawn to Tallene's claims. However, while a healthy diet can help manage PCOS symptoms, there is no evidence that avoiding gluten and dairy is necessary. In Amy's case, the keto diet made her feel unwell, and she struggled to eliminate gluten and dairy from her meals. Reflecting on her experience, she said, 'It makes you feel like you failed. ' Dr. Gunter warned that influencer diet plans could potentially lead to eating disorders. Tallene did not respond to the BBC's request for comment. Amy's doctor had suggested hormonal birth control to manage her symptoms but did not offer any other treatment options. Dr. Gunter highlighted that women with PCOS often feel helpless without access to proper treatment, and misinformation can delay their search for medical help, potentially leading to further health issues like type 2 diabetes. Medlyn, a medical student from Nigeria, is working to reduce the stigma surrounding PCOS. After trying various diets and supplements without success, she now encourages women to consult their doctors and seek evidence-based treatments. She stated, 'When you’re diagnosed with PCOS, it comes with so much stigma. People think you’re lazy, that you don’t take care of yourself, and that you can’t get pregnant. ' Despite the challenges, Medlyn is learning to embrace her unique features associated with PCOS. Sasha Ottey, from the charity PCOS Challenge, reassured that women with PCOS can have children, stating, 'Women with PCOS have the same number of children as those without; you just might need a bit of help getting there. ' Dr. Gunter advised women who are not receiving adequate care from their general practitioners to seek out specialists in endocrinology or obstetrics and gynecology for more advanced management. Sophie continues to explore treatment options with her doctors, hoping to find a solution that works for her. It is crucial for women to seek reliable information and support when navigating health challenges like PCOS.