In the Business of Selling 'Cures' - Examining PCOS-related Misinformation on Instagram
In the past couple of weeks, a few advertisements have become permanent fixtures across my social media apps. Most were sponsored ads from Gynoveda, a company that works for healthy menstruation by using Ayurveda. The tagline - "freedom from PCOS" plastered on the ads across three social media platforms - Instagram, YouTube, and Facebook left me particularly befuddled. I wondered why a company working in menstruation would make such a claim in the first place. In the videos, the company substantiated their claim through brief clips of women sharing their "success stories" with Gynoveda's products, particularly for PCOS. I visited their page on Instagram once, and numerous other posts began flooding my explore section on Instagram. As I dug into the PCOS related ones, I noticed a few hashtags became recurrent. These included #PCOSIndia, #PCOSWeightLoss, #PCOSAwarenessIndia, #PCOSDiet, #PCOSSupport, #PCOSCommunity among the several others. The #PCOSIndia hashtag piqued my interest, and I decided to explore further the contents and narratives of the posts tagged under this hashtag. Several posts made claims about reversing PCOS and curing it completely by employing several modalities – diets, detoxes, teas, natural techniques, clean eating and personal PCOS programs that included workouts, exercise tips and diet plans.
In this blog, I examine those posts on Instagram that make the specific claim to "reverse"/ "cure" PCOS and its symptoms and "provide complete freedom from PCOS". Through this essay, I wish to highlight the kind of misinformation that has become ubiquitous on social media (Chou, Oh, & Klein, 2018), especially for such a complex and multi-faceted condition as PCOS. At the outset, I must state that since I do not have the lived experience of PCOS, I have sought the help of my friends who have been diagnosed with PCOS. They have been kind enough to share the everyday realities of living with PCOS candidly. After providing a summary of the various posts selected for review, I analyze the narratives they perpetuate by looking at relevant literature and lived experiences of my friends with PCOS.
Understanding Health-Related Misinformation on Social Media
This section lays out what constitutes health-related misinformation on social media to build on the concepts explained here when I analyze the posts and content related to PCOS misinformation on Instagram. The COVID-19 pandemic provided us with a glimpse into how misinformation spreads like wildfire across social media platforms. Alex Hern's report on Instagram's algorithms peddling health and vaccine-related misinformation about COVID-19 in the United States shines a light on the impact they can have on individual and public opinion. Similarly, in India, social media platforms like WhatsApp, Facebook, and Instagram became hubs of perpetuating misinformation on COVID-19, its origins, remedies and conspiracy theories (Badrinathan, 2021). According to Chou, Oh, & Klein (2018), health misinformation refers to health-related claims that are "currently false due to a lack of scientific evidence". While some evidence links the sharing of health-related misinformation to users' health behaviours, health-related knowledge and attitudes, only more research in the field can establish this link with certanity. Research on social media misinformation and the previous outbreak of diseases in different parts of the world, such as the Zika virus (Bode & Vraga, 2017) and the Ebola virus (Guidry, Jin, Orr, Messner, & Megnack, 2017), platform-specific misinformation on cancer (Walsh-Buhi, 2020) or the human papillomavirus (HPV) vaccine (Massey, et al., 2020) provide deep insights into the nature, content and impact of social media misinformation.
Several theories have been adopted from pre-existing ideas across the disciplines of psychology, communication, network sciences to explain the mechanisms involved in the spread of health misinformation from a micro-level to a macro level on the internet (Wang, McKee, Torbica, & Stuckler, 2019). Health-related misinformation is particularly difficult to contain and correct, given that once a belief is adopted, accepting any contradictory or correct information that does not match the pre-existing set of beliefs becomes difficult (Bode & Vraga, 2017, citing Jerit & Barabas, 2012). Resultantly, the viewer tends to dismiss any source of information that debunks or corrects the misinformation. On social media especially, assessing the credibility of sources is not only challenging, but the lack of factual verification and accountability becomes a barrier to verified information and sources, like Wang, McKee, Torbica, & Stuckler (2019) observe.
What Do Instagram Posts Reveal?
The hashtag #pcosindia contains nearly 9000 posts where one can find an overwhelming amount of information on PCOS targeted at the Indian audience. From Mythbusters, memes, tips on lifestyle management for PCOS (diets, recipes, exercise and weight loss tips), to dissecting different aspects of PCOS. Many posts break down the use of certain medications, fertility, understanding hormonal interactions, simplifying medical terminologies. From this vast ocean of information and content, I carefully looked at posts that explicitly mentioned "PCOS reversal" or "cure" or "freedom from PCOS". Additionally, I chose posts from pages that were not PCOS-centric but created a few posts about reversing PCOS using a few tips and techniques. Some posts were as recent as June 01, 2021, while some dated back to 2020. One post (among other similar posts) from the account LetFoodCureYou by a doctor states that PCOS reversal meant regulating