Crying Wolf: A Qualitative Review of Misinformation and Conspiracy Theories in Lupus Erythematosus

False risk assessment

While lupus predominantly affects females, approximately 10% of those with lupus are male. ⁷ Men with lupus described frustration in explaining their diagnosis to those who questioned its presentation in males. Social media posts about lupus by males were infrequent, though reliable sources cited the common misbelief that only females were affected and sought to educate about incidence of lupus in males.

Toxicity of traditional treatments

The use of conventional medications for lupus is supported by robust medical evidence and guidelines, though they do have recognized potential adverse effects. Well-studied treatments such as hydroxychloroquine, methotrexate, and topical steroids were often cited as “toxic” on social media. Misinformation related to topical steroids is increasingly recognized, particularly in the context of atopic dermatitis. ⁸ Similar spread of overstated claims of skin thinning, systemic absorption, and “addiction” was occasionally seen in lupus online forums. Disparagement of traditional treatments was typically paired with promotion of “natural” alternatives.

Conversely, the exaggeration of potential benefits of hydroxychloroquine was a more recent feature of disinformation online. This was a subject of public controversy during the pandemic, when inaccurate claims were made by influential public figures regarding its protective effects in COVID-19. ⁹ An ensuing surge in hydroxychloroquine demand was anticipated, and patients with lupus voiced concern and anxiety about medication availability (Figure 2).OPEN IN VIEWER

Alternative treatments and cures

Promotion of alternative treatments for lupus was a dominant theme of misinformation. Functional doctors or naturopaths were often at the face of these, recommending or selling herbal supplements, homeopathic remedies, cannabis oil, and/or dietary changes in the absence of supportive evidence. These suggestions were echoed on social media by patients who reported success with varying combinations of these. Specific online advice by one functional medicine doctor advised on multiple steps to “reverse” lupus, including repair of “leaky gut” through elimination of toxins and avoiding gluten. The concept of intestinal barrier dysfunction resulting in altered permeability and “leaky gut” is frequently referred to in functional medicine as an association with multiple autoimmune and inflammatory diseases, though it has limited supportive evidence in medical literature. ¹⁰ Though there is evolving evidence to support the immunologic influence of the gut microbiome in the context of inflammatory and autoimmune disorders, including lupus, ¹¹ the directionality of the relationship remains unclear. Gluten-free diets in the absence of coeliac disease were frequently cited, with the misconception that gluten is inflammatory or harmful to health. ¹² Though an increased prevalence of coeliac disease in patients with SLE is recognized, ¹³ unnecessary elimination of gluten from the diet is not warranted in those without coeliac disease, and may lead to dietary deficiencies. Autohemotherapy, which involves reinjection of small volumes of a patient’s blood, occasionally following ex-vivo treatment with ozone, ¹⁴ was infrequently mentioned by social media accounts of functional medicine practitioners, advertising treatment in private clinics. There is a significant risk of inducing major flares in lupus activity if auto-antibodies are reinjected into a patient at high concentrations, highlighting the predatory behavior of online grifters to potentially vulnerable lupus patients.

Supplements recommended as alternative lupus treatments included turmeric, cannabinoids, omega-3 fatty acids, and vitamin D. Turmeric, containing the compound curcumin, was reported to improve symptoms. While there is some in vitro evidence of potential immunomodulatory effects in SLE, ¹⁵ oral bioavailability is poor, there are no clinical trials showing benefit in lupus, and it is not considered potent enough to form part of standard medical treatment. Endorsement of cannabis products was common—typically in reference to pain and stress management, though some advocated topical application of cannabis oil to improve cutaneous lupus. Cannabinoids may have symptomatic benefit through anti-inflammatory and immunomodulatory effects, though high quality evidence of clinical benefit is scant, particularly with regards to topical use. ¹⁶ Cannabis oil has been used to treat pain associated with epidermolysis bullosa and pyoderma gangrenosum, ¹⁷ but there is minimal evidence of benefit on disease activity. Despite the potential theoretical benefit of cannabinoids in lupus, given the mixed quality and content of cannabinoid oils on the market ¹⁸ and the lack of clinical trials showing benefit, it is likely that cannabis-derived products will remain an alternative treatment for lupus for the foreseeable future. Vitamin D and omega-3 fatty acid supplements have weak evidence to support benefit in lupus, ¹⁹ although they are only likely to be harmful in excess. Vitamin D may be deficient in patients with lupus as a consequence of the photoprotection necessary to avoid disease flare. Lower levels have been associated with greater SLE disease activity, although there are multiple potential confounding factors. ²⁰ The role of vitamin D was overemphasized by some as a potential cure for lupus. Encouragement to sunbathe to improve lupus symptoms was a critically misleading mention in peer forums. Some individuals reported improved joint symptoms with sunlight and sunbed exposure, proposing that others with lupus consider this—a potentially dangerous suggestion given the recognized risk of lupus flare with any UV exposure. These divergent perceptions were often refuted within comment sections, and correct guidance on photoprotection prevailed.