Post-2019 Data Reveals Significantly Higher Prevalence of ME/CFS in England

Recent research indicates that the number of individuals living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in England is substantially higher than earlier estimates suggested. The study, conducted using NHS data covering over 62 million people, estimates that approximately 404,000 residents are affected by ME/CFS, marking a 62% increase from the previous figure of around 250,000. This suggests that nearly 1 in 250 people in England may be living with this chronic, debilitating condition.

The research highlights notable disparities across different demographic groups. It found that White populations are nearly five times more likely to be diagnosed with ME/CFS compared to Black, Asian, and minority ethnic groups. The likelihood of diagnosis also varies geographically, with Cornwall and the Isles of Scilly experiencing the highest prevalence rates, whereas North West and North East London report the lowest.

Age-wise, the condition peaks around age 50 for women and about ten years later for men, with women being six times more affected during middle age. The study underscores the influence of ethnicity on diagnosis likelihood, pointing out that Chinese, Asian/Asian British, and Black/Black British communities are significantly underdiagnosed, with rates 65% to 90% lower than for White individuals. These gaps suggest that access to diagnosis is often inconsistent and depends heavily on geographic location and ethnicity.

Professor Chris Ponting from the University of Edinburgh emphasized that diagnosis appears to be more of a 'lottery,' contributing to feelings of invisibility among patients. Improving healthcare professional training and developing accurate diagnostic tools are crucial steps recommended by the researchers.

ME/CFS is characterized by post-exertional malaise, where symptoms worsen significantly following minor exertion, along with persistent pain, brain fog, and extreme fatigue that does not improve with rest. Despite its severity, the causes remain largely unknown, and there are currently no definitive diagnostic tests or cures.

The study used detailed NHS data to explore prevalence by gender, age, ethnicity, and regional differences, highlighting the urgent need for more targeted research and better healthcare pathways for those affected. The findings reinforce the importance of increased awareness and equitable access to diagnosis and treatment for all populations.

Source: https://medicalxpress.com/news/2025-04-myalgic-encephalomyelitischronic-fatigue-syndrome-cases.html