Naik, Hiten, Pongratz, Kyla, Malbeuf, Michelle et al. · Internet interventions · 2025 · DOI
Researchers created MyGuide Long COVID, a free website where people with long COVID answer questions about their symptoms and receive personalized information and self-management tips. The website launched in August 2023 and attracted nearly 8,600 users in its first year, with the most popular topics being post-exertional malaise (worsening symptoms after activity) and general information about long COVID. This shows that a patient-centered online tool developed together with both doctors and people living with long COVID can successfully help patients manage their condition.
Self-management support is critical for long COVID patients, yet reliable, tailored resources are scarce. This study shows that involving patients as equal partners in designing digital health tools can create practical, accessible solutions that address the specific needs of the long COVID community, including the complex symptom of post-exertional malaise.
This study does not demonstrate that MyGuide Long COVID actually improves patient outcomes, reduces symptom severity, or enhances quality of life—it only shows that people visit the website. Web analytics alone cannot measure whether users find the resources helpful, apply the advice, or experience any clinical benefit. The study is descriptive and does not include comparison groups or controlled outcome measures.
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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