To aid their efforts, the study team from the University of Edinburgh are calling on more people with ME/CFS, aged 16 and over and based in the UK to take part in the study.

Insight into ME/CFS Symptoms and Co-Occurring Conditions

Experts analysed anonymous survey questionnaires from more than 17,000 people with ME/CFS. They included information on how long the respondent has had ME/CFS symptoms, when they were diagnosed, and whether they had any co-occurring conditions.

The study confirmed the well-established sex bias amongst ME/CFS patients, with women making up 83.5 percent of respondents.

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

A condition was considered active if the participant had experienced symptoms in the preceding six months.

The most common active co-occurring condition was irritable bowel syndrome (41.3 percent), with clinical depression (32.4 percent), fibromyalgia (29.5 percent), anemia (14.1 percent) and hypothyroidism (12.8 percent) 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.

Participants were also asked to define the severity of their illness from mild to very severe using definitions from the UK’s National Institute for Health and Care Excellence (NICE) guidelines.

To increase their understanding of the disease, the study team want to recruit a further 6000 participants to the study. People with ME/CFS can sign up here: www.decodeme.org.uk/portal/

In the next stage of the project experts will study at least 20,000 individual DNA samples to explore whether the disease is partly genetic and, if so, research its cause.

ME/CFS is estimated to affect more than one quarter of a million people in the UK, of all ages and from all social and economic backgrounds.

Its key feature, called post-exertional malaise, is a delayed dramatic worsening of symptoms following minor physical effort. Other symptoms include pain, brain fog and extreme energy limitation that does not improve with rest. Causes are unknown and there is currently no diagnostic test or cure.

Reference :

1. Typing myalgic encephalomyelitis by infection at onset: A DecodeME study – (https://openresearch.nihr.ac.uk/articles/3-20/v4)

Source: Eurekalert