Blossom Dharmaraj

Background: Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a complex illness that typically presents with disabling fatigue and 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 (rebranded as X) to understand the concerns and priorities of individuals living with ME/CFS, with a focus on (1) the COVID-19 pandemic and (2) publication of the 2021 UK National Institute for Health and Care Excellence (NICE) guidelines on the diagnosis and management of ME/CFS. Methods: We used the Twitter application programming interface to collect tweets related to ME/CFS posted between January 1, 2010, and January 30, 2024. Tweets were sorted into 3 chronological periods (pre–COVID-19 pandemic, post–COVID-19 pandemic, and post-UK 2021 NICE Guidelines publication). A Robustly Optimized Bidirectional Embedding Representations from Transformers Pretraining Approach (RoBERTa) language processing model was used to categorize the sentiment of tweets as positive, negative, or neutral. We identified tweets that mentioned COVID-19, the UK NICE guidelines, and key themes identified through latent Dirichlet allocation (ie, fibromyalgia, research, and treatment). We sampled 1000 random tweets from each theme to identify subthemes and representative quotes. Results: We retrieved 906,404 tweets, of which 427,824 (47.2%) were neutral, 369,371 (40.75%) were negative, and 109,209 (12.05%) 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 similarities with ME/CFS, stigmatization associated with both disorders, and lack of effective treatments. Treatment-related tweets often described frustration with ME/CFS labeled as mental illness, dismissal of concerns by health care providers, and the need to seek out “good physicians” 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 suggesting a biopsychosocial etiology for ME/CFS or supporting management with psychotherapy or graduated activity. Tweets about the UK NICE guidelines expressed frustration with the 2007 version that recommended cognitive behavioral therapy and graded exercise therapy, and a prolonged campaign by advocacy organizations to influence subsequent versions. Tweets showed high acceptance of the 2021 UK NICE guidelines, which were seen to validate ME/CFS as a biomedical disease and recommended against graded exercise therapy. Tweets about COVID-19 often noted overlaps between post–COVID-19 condition and ME/CFS, including claims of a common biological pathway, and advised there was no cure for either condition. Conclusions: Our findings suggest research is needed to inform how best to support patients’ engagement with evidence-based care. Furthermore, while patient involvement with ME/CFS research is critical, unmanaged intellectual conflicts of interest may threaten the trustworthiness of research efforts.

BACKGROUND Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a complex illness that typically presents with disabling fatigue and 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 (rebranded as X) to understand the concerns and priorities of individuals living with ME/CFS, with a focus on (1) the COVID-19 pandemic and (2) publication of the 2021 UK National Institute for Health and Care Excellence (NICE) guidelines on the diagnosis and management of ME/CFS. METHODS We used the Twitter application programming interface to collect tweets related to ME/CFS posted between January 1, 2010, and January 30, 2024. Tweets were sorted into 3 chronological periods (pre–COVID-19 pandemic, post–COVID-19 pandemic, and post-UK 2021 NICE Guidelines publication). A Robustly Optimized Bidirectional Embedding Representations from Transformers Pretraining Approach (RoBERTa) language processing model was used to categorize the sentiment of tweets as positive, negative, or neutral. We identified tweets that mentioned COVID-19, the UK NICE guidelines, and key themes identified through latent Dirichlet allocation (ie, fibromyalgia, research, and treatment). We sampled 1000 random tweets from each theme to identify subthemes and representative quotes. RESULTS We retrieved 906,404 tweets, of which 427,824 (47.2%) were neutral, 369,371 (40.75%) were negative, and 109,209 (12.05%) 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 similarities with ME/CFS, stigmatization associated with both disorders, and lack of effective treatments. Treatment-related tweets often described frustration with ME/CFS labeled as mental illness, dismissal of concerns by health care providers, and the need to seek out “good physicians” 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 suggesting a biopsychosocial etiology for ME/CFS or supporting management with psychotherapy or graduated activity. Tweets about the UK NICE guidelines expressed frustration with the 2007 version that recommended cognitive behavioral therapy and graded exercise therapy, and a prolonged campaign by advocacy organizations to influence subsequent versions. Tweets showed high acceptance of the 2021 UK NICE guidelines, which were seen to validate ME/CFS as a biomedical disease and recommended against graded exercise therapy. Tweets about COVID-19 often noted overlaps between post–COVID-19 condition and ME/CFS, including claims of a common biological pathway, and advised there was no cure for either condition. CONCLUSIONS Our findings suggest research is needed to inform how best to support patients’ engagement with evidence-based care. Furthermore, while patient involvement with ME/CFS research is critical, unmanaged intellectual conflicts of interest may threaten the trustworthiness of research efforts.

Background: Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. Objective: This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. Methods: Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2’s features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. Results: A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. Conclusions: Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology.

BACKGROUND Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. OBJECTIVE This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. METHODS Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2’s features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. RESULTS A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. CONCLUSIONS Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology.