JMIR Publications

ABSTRACT

Background:

Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a complex illness that typically presents with disabling fatigue, cognitive dysfunction, and functional impairment. The etiology and management of ME/CFS remain contentious and patients often describe their experiences through social media.

Objective:

We explored public discourse on Twitter/X to understand the concerns and priorities of individuals living with ME/CFS.

Methods:

We used the Twitter application programming interface to collect tweets related to ME/CFS posted between January 1st, 2010, and January 30th, 2024. Tweets were sorted into three chronological time periods (pre-COVID-19, post-COVID-19, and post-UK NICE Guidelines). A Robustly Optimized BERT Pretraining Approach language processing model was used to categorize the sentiment of tweets as positive, negative, or neutral. We constructed word clouds for all tweets in the three pre-specified time periods and identified tweets that mentioned COVID, the UK NICE guidelines, and key themes that were prevalent among the word clouds (i.e., fibromyalgia, research, physicians). We sampled 1,000 random tweets from each theme, which were independently reviewed in duplicate to identify subthemes and representative quotes.

Results:

We retrieved 905,718 tweets, of which 53% were neutral, 38% were negative, and 9% were positive. Word clouds highlighted patients’ symptoms and shifted from fibromyalgia being mentioned pre-COVID to long COVID mentioned after the onset of the COVID-19 pandemic. Tweets mentioning fibromyalgia acknowledged the similarities with ME/CFS, stigmatization associated with both disorders, and lack of effective treatments. Physician-related tweets often described frustration with ME/CFS labelled as mental illness, dismissal of complaints by healthcare providers, and the need to seek out ‘good doctors’ who viewed ME/CFS as a physical disorder. Tweets on research typically praised studies of biomarkers and biomedical therapies, called for greater investment in biomedical research, and expressed frustration with studies that suggested a biopsychosocial etiology for ME/CFS or those supporting management with psychotherapy or graduated activity. Tweets about the UK NICE guidelines expressed frustration with the 2007 version that recommended cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and a prolonged campaign by advocacy organizations to influence subsequent versions. Tweets showed very high acceptance of the 2021 UK NICE guideline which was seen to validate ME/CFS as a biomedical disease and removed recommendations in favor of CBT and GET. Tweets about COVID-19 typically proposed overlaps between long COVID and ME/CFS, including claims of a common biological pathway, and advised there was no cure for either condition.

Conclusions:

Our findings suggest that public discourse on Twitter regarding ME/CFS highlights stigmatization and dismissal by physicians; frustration with management approaches focused on activity and psychotherapy; a desire for research that validates a biomedical model of etiology and effective treatments for ME/CFS; and an overlap between fibromyalgia, long COVID, and ME/CFS.