Initial findings from the DecodeME questionnaire data published

24 August 2023


We’ve analysed questionnaire answers from the first 17,000 DecodeME participants and the results have been published by NIHR Open Research – read the paper HERE.

We are still recruiting participants and will continue to collect information as more join the study – take part HERE.

Main findings from our analysis:

Being female, older and ill for longer increase the chance of greater severity

Our findings support the assumption that ME/CFS is significantly more common in females as 83.5% of participants reported their sex assigned at birth as female. Furthermore, our data suggests that females are more likely to experience severe symptoms. This likelihood further increases with age and if they have had the condition for more than 10 years.

Additionally, a higher percentage of female participants reported other co-occurring health conditions.

Two-thirds (66.7 per cent) of women, and slightly more than half (52.7 per cent) of men, reported at least one active co-occurring condition. Similarly, 39.2 per cent of women and 28.6 per cent of men reported at least one inactive co-occurring condition.

The most common active co-occurring condition was irritable bowel syndrome (41.3 per cent), with clinical depression (32.4 per cent), fibromyalgia (29.5 per cent), anaemia (14.1 per cent) and hypothyroidism (12.8 per cent) also featuring prominently.

Women also reported, on average, more symptoms than men – 42 compared with 36.

The most common of these symptoms were brain fog – a term commonly used to describe the cognitive impairment experienced by participants – unrefreshing sleep, and muscle pain.

Experts say that gaining a better understanding of how ME/CFS affects people is the first step to developing effective treatment options.

To further improve our understanding, we are still recruiting participants whose questionnaire answers will help us understand even more about ME/CFS. Many of these participants will also be invited to provide a DNA sample to contribute to the DNA portion of the study, which aims to identify the biological causes of the illness.

Take part HERE.

Do you know someone with ME/CFS? Spread the word and help them take part in the world’s largest ME/CFS study. Go to our ways to share page to find out how.