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Brief Overview of 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID – Lisbon, April 2024

Last week, ME Research UK attended, virtually, the “1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID” held in Portugal. The conference spanned two days and featured talks by established ME/CFS researchers (several of whom have previously received funding from ME Research UK), as well as discussions with early career researchers. The presentations and discussions were informative and covered a wide range of topics, providing valuable insights into ME/CFS and long COVID in terms of history, epidemiology, biological findings, potential underlying mechanisms, diagnosis and management, and lived experiences.

Key themes and topics discussed included –

  • Challenges in determining prevalence
    As a result of the COVID-19 pandemic, there is thought to be a considerable rise in ME/CFS cases, with many individuals with long COVID fulfilling ME/CFS criteria. However, longstanding difficulties in accurately determining the prevalence of ME/CFS were acknowledged, citing factors such as the mislabelling of ME/CFS as psychogenic, and underreporting in underserved communities, and amongst certain ethnic groups.
  • Biological abnormalities
    A wide range of biological abnormalities were discussed, often overlapping in ME/CFS and long COVID research. These included cardiovascular abnormalities, neuropathy, disturbed metabolism, immune abnormalities, and potential mitochondrial dysfunction. Additionally, complications specific to COVID-19, such as myocarditis and pleural effusions, were addressed.
  • Disease heterogeneity
    The conference highlighted the heterogeneity of both ME/CFS and long COVID, emphasising a need for subtyping to increase the reproducibility of research. Factors such as core symptoms, disease triggers, and disease stage were suggested for consideration in subtyping.
  • Need for comprehensive clinical assessment
    The importance of comprehensive clinical assessment of individuals with ME/CFS was highlighted, emphasising the need for clinicians to manage major symptomatic aspects and to identify and treat all identifiable medical conditions (co-morbid and otherwise). Interventions for orthostatic intolerance and mast cell activation syndrome (MCAS) were described.

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