Background/Purpose: The intersection of nutrition and autoimmune myopathies represents a significant yet understudied domain in rheumatological care. We conducted a meticulous analysis of online myositis communities to characterise the prevalence, content and temporal patterns of diet-related discussions amongst patients, providing insight into self-reported nutritional priorities that may inform clinical practice.

Methods: Using a bespoke Python script, we extracted all submissions (excluding comments) from the AcademicTorrents Reddit data dumps (2005–feb. 2025, ~24 billion items), and added all posts from three myositis-focused subreddits, which in total yielded 17,902 posts. After rigorous filtering for relevance—retaining only posts explicitly mentioning myositis or related terminologies (e.g., necrotizing or inflammatory myopathy) with sufficient content—2,356 posts from 1,704 unique authors were analyzed (Figure 1A). An exhaustive lexicon of 190 precisely defined nutritional and dietary terms was systematically applied, with results subsequently classified into 77 discrete categories.

Results: Nutritional content featured prominently in myositis-related discourse, appearing in 31.5% of all posts and contributed by 36.1% of unique authors (Figure 1B). As demonstrated in Figure 1C, when categorized beyond general terminology (e.g., “eat”, “food”), the most salient specific domains emerged as:Vitamins and supplements, with particular emphasis on vitamin DProtein consumption and its purported relationship to muscle healthStructured dietary approachesNotably, within structured dietary approaches, ketogenic protocols garnered significant attention, followed by anti-inflammatory and autoimmune-specific regimens. The sophistication of these discussions reflects considerable patient engagement with nutritional literature, often citing both scientific studies and anecdotal experiences.We analyzed posts mentioning diet-related terms by extracting 21-word windows (±10 words) around each mention. After cleaning and filtering, we constructed a word co-occurrence network to visualize which concepts most frequently appear in close proximity to dietary references in patient-generated discussions (Fig. 1D). This word co-occurrence network, derived from Reddit posts mentioning “diet,” reveals clusters of frequently associated terms, highlighting popular dietary approaches like keto and paleo, as well as the strong connection between diet and discussions around health, symptoms, and personal experiences. The thickness of the connecting lines indicates the frequency of these word pairings within a 21-word window

Conclusion: This comprehensive analysis reveals that nutritional considerations constitute a substantial component of patient-led myositis discussions, with particular emphasis on targeted supplementation and specialised diets. These findings highlight a critical opportunity for rheumatologists to address nutrition more systematically in clinical encounters and research agendas, potentially enhancing therapeutic approaches to this complex spectrum of disorders.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/nutritional-discourse-in-online-myositis-communities-a-reddit-analysis-of-patient-led-discussions/