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 –
- History of ME/CFS
The conference delved into the extensive history of ME/CFS resulting from infectious outbreaks and pandemics, such as the Akureyri outbreak in Iceland, the Royal Free Hospital outbreak in the UK, the Lake Tahoe outbreak in the US, up to the recent 2019 Coronavirus pandemic. Whilst each infectious outbreak/pandemic has unique symptom features, the similarities in resulting symptoms are even greater.
- 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.
Conference Report
Part 1 | Part 2
