A significant increase in ME diagnoses in England revealed by new research, with over 150,000 more people living with chronic fatigue syndrome than previously thought.
Over 150,000 More People in England Have ME Than Previously Thought, Study Finds
Over 150,000 more people in England are living with chronic fatigue syndrome (CFS) than previously thought, according to a study that highlights the ‘postcode lottery‘ of diagnosis.
Myalgic Encephalomyelitis (ME) is a chronic fatigue syndrome characterized by persistent and profound fatigue.
The diagnosis of ME involves a comprehensive medical history, physical examination, and laboratory tests to rule out other conditions.
According to the Institute of Medicine, symptoms must last for at least 6 months and worsen with activity.
Common symptoms include post-exertional malaise, unrefreshing sleep, and cognitive impairment.
Regional Disparities in Chronic Fatigue Diagnoses
Research into myalgic encephalomyelitis or chronic fatigue syndrome has revealed stark regional disparities in diagnoses. The study found that 176 practices in England – mostly in deprived areas – had no recorded ME patients, indicating a significant gap in access to diagnosis and treatment.
Ethnic Inequalities in Chronic Fatigue Diagnoses
The research also showed that there are ethnic inequalities relating to chronic fatigue diagnoses rates. White people with ME in England were almost five times more likely to be diagnosed with the condition than other ethnic groups. People from Black and Asian backgrounds were least likely to be diagnosed with the condition, with rates between 65% and 90% lower than their white counterparts.
Ethnic inequalities refer to disparities in social, economic, and health outcomes between different ethnic groups within a population.
These inequalities can be caused by various factors such as discrimination, racism, and socioeconomic disadvantage.
Studies have shown that ethnic minorities often face higher rates of poverty, unemployment, and poor health compared to the majority population.
In the United States, for example, African Americans are more likely to live in poverty and experience police brutality than white Americans.
Addressing ethnic inequalities requires a comprehensive approach that includes policy changes, education, and community engagement.
Regional Variations in Chronic Fatigue Prevalence
The study found that regional disparities in chronic fatigue prevalence are significant. Cornwall and the Isles of Scilly had the highest rates, while north-west and north-east London had the lowest. These variations suggest a ‘postcode lottery‘ with regard to the likelihood of receiving a chronic fatigue diagnosis.
Impact on Diagnosis and Treatment
The study highlights the need for improved training of medical professionals and further research into accurate diagnostic tests. People struggle to get diagnosed with ME/CFS, as diagnosis is important for validation of symptoms and access to recognition and support. The findings suggest that the true figure of people living with chronic fatigue in England may be around 400,000.
Expert Insights
Dr. Chris Ponting, study lead at the MRC Human Genetics Unit, said: ‘The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, depending on where you live and your ethnicity. There are nearly 200 GP practices – mostly in deprived areas of the country – that have no recorded ME/CFS patients at all.‘
Gemma Samms, an ME Research UK-funded PhD student, added: ‘People struggle to get diagnosed with ME/CFS. Diagnosis is important, because it validates their symptoms and enables them to receive recognition and support. Our results should now lead to improved training of medical professionals and further research into accurate diagnostic tests.‘
Dr. Charles Shepherd, medical advisor at the ME Association, stated: ‘Over the past year, the ME Association has been discussing with charity colleagues and other organisations how the current estimate of around 250,000 people with ME/CFS is almost certainly an underestimate given the growth in population since this figure was first used and the large number of people who now have post-Covid ME/CFS.‘
The study’s findings provide important new evidence for a revised prevalence figure of around 400,000 people living with chronic fatigue in England.
