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 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 2021 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 identified tweets that mentioned COVID, the UK NICE guidelines, and key themes identified through Latent Dirichlet Allocation (i.e., fibromyalgia, research, treatment). We sampled 1,000 random tweets from each theme, which were independently reviewed in duplicate to identify subthemes and representative quotes.

Results:

We retrieved 906,404 tweets, of which 47% (n=427,824) were neutral, 41% (n=369,371) were negative, and 12% (n=109,209) were positive. Over time, both the proportion of negative and positive tweets increased, and the proportion of neutral tweets decreased (P<.001 for all changes). Tweets mentioning fibromyalgia acknowledged the similarities with ME/CFS, stigmatization associated with both disorders, and lack of effective treatments. Treatment-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 high acceptance of the 2021 UK NICE guideline which was seen to validate ME/CFS as a biomedical disease and recommended against 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 biomedical treatments for ME/CFS; and overlap between fibromyalgia, long COVID, and ME/CFS.