Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X).

Khakban, Iliya, Jain, Shagun, Gallab, Joseph et al. · Journal of medical Internet research · 2025 · DOI

Quick Summary

Researchers analyzed nearly 900,000 posts about ME/CFS on Twitter from 2010 to 2024 to understand what patients and the public were discussing about the illness. They found that most posts were neutral (47%), but negative posts increased over time, especially after the COVID-19 pandemic and when new UK treatment guidelines were published in 2021. Patients frequently expressed frustration about ME/CFS being dismissed as a mental health condition and celebrated the 2021 guidelines that recognized it as a physical disease.

Why It Matters

This study captures the authentic voices and concerns of ME/CFS patients and advocates in real-time, revealing widespread frustration with misdiagnosis and dismissal by healthcare providers. Understanding public sentiment and research priorities can help guide clinical practice, advocacy efforts, and research funding decisions that align with patient needs. The findings highlight the profound impact of guideline changes and the pandemic on patient perspective and engagement.

Observed Findings

Of 906,404 tweets analyzed, 427,824 (47.2%) were neutral, 369,371 (40.75%) were negative, and 109,209 (12.05%) were positive; negative and positive proportions increased significantly over time while neutral tweets decreased (P<.001).
Treatment-related tweets frequently expressed frustration with ME/CFS being labeled as mental illness and described dismissal by healthcare providers.
Research-related tweets praised biomarker and biomedical therapy studies but criticized studies suggesting biopsychosocial etiology or supporting psychotherapy and graded exercise therapy.
The 2021 UK NICE Guidelines showed high acceptance among Twitter users, particularly for removing recommendations for graded exercise therapy.
Tweets about COVID-19 noted similarities between post-COVID-19 condition and ME/CFS, with claims of shared biological pathways and statements that neither condition has a cure.

Inferred Conclusions

Patients with ME/CFS express strong preference for biomedical conceptualizations of their illness and skepticism toward psychologically-oriented treatments, reflecting decades of advocacy against biopsychosocial models.
The 2021 UK NICE Guidelines represented a significant shift in public perception, validating biomedical approaches and reducing endorsement of previously recommended treatments.
The COVID-19 pandemic increased public engagement and emotional expression about ME/CFS, creating both advocacy opportunities and potential for intellectual conflicts of interest in patient-led research initiatives.
Healthcare provider dismissal and misclassification of ME/CFS remain widespread concerns driving patient frustration and social media discourse.

Remaining Questions

How do ME/CFS patients who are not active on social media differ in their views and priorities compared to the Twitter-active population captured here?
What specific healthcare experiences and clinical encounters drive the documented increase in negative sentiment over time?
How should research communities balance patient engagement and advocacy involvement with management of intellectual conflicts of interest in research design and interpretation?
Do the observed patient preferences for biomedical treatments over psychological interventions reflect current evidence regarding treatment efficacy, or do they reflect historical experiences and perceived stigma?

What This Study Does Not Prove

This study does not prove that social media sentiment accurately represents all ME/CFS patients' views—only those active on Twitter, who may differ from the broader patient population. It cannot establish causation between specific events (pandemic, guidelines) and sentiment changes, only temporal correlation. The study does not determine whether patients' frustrations with psychotherapy or graduated activity reflect evidence-based medicine or represent legitimate concerns requiring research clarification.

Metadata

DOI: 10.2196/65087
PMID: 40397934
Evidence level: Single-study or moderate support from human research
Last updated: 12 April 2026

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About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →

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The first block is for the primary paper and is the citation you should use in research work. The atlas-snapshot line only applies if you are specifically referring to this atlas’s reading of the paper on the date shown.

Primary citation

Khakban, Iliya, Jain, Shagun, Gallab, Joseph, Dharmaraj, Blossom, Zhou, Fangwen, Lokker, Cynthia, et al. (2025). Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X).. Journal of medical Internet research. https://doi.org/10.2196/65087

BibTeX

@article{mecfsatlas-khakban-2025-impact-covid,
  author  = {Khakban, Iliya and Jain, Shagun and Gallab, Joseph and Dharmaraj, Blossom and Zhou, Fangwen and Lokker, Cynthia and Abdelkader, Wael and Zeraatkar, Dena and Busse, Jason W},
  title   = {Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X).},
  journal = {Journal of medical Internet research},
  year    = {2025},
  doi     = {10.2196/65087},
  note    = {PubMed: 40397934},
  url     = {https://www.mecfsatlas.com/evidence/khakban-2025-impact-covid},
}

Atlas snapshot reference

ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/khakban-2025-impact-covid

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Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X).

Quick Summary

Why It Matters

Observed Findings

Inferred Conclusions

Remaining Questions

What This Study Does Not Prove

Tags

Metadata

Explore further

Cite this study

Evidence Atlas

Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X).

Quick Summary

Why It Matters

Observed Findings

Inferred Conclusions

Remaining Questions

What This Study Does Not Prove

Tags

Metadata

Explore further

Cite this study