Women with ME tend to have more symptoms than men, study suggests | ME / Chronic fatigue syndrome

Women with chronic fatigue syndrome (CFS) tend to have more symptoms than men and are more likely to develop increasingly severe symptoms over time, according to initial results from a major study.

It is already known that women are at higher risk of CFS, also known as myalgic encephalomyelitis (ME), and the latest study, called DecodeME, provides new insights into how their experience differs from men. The study found that women who have ME/CFS for more than 10 years are more likely to experience increasingly severe symptoms as they age.

Study lead Prof Chris Ponting, from the University of Edinburgh’s Institute of Genetics and Cancer, said: “ME/CFS is a devastating disease affecting a UK population the size of Derby. We discovered that the disease is worse for women, in older people, and many years after their ME/CFS started.”

ME/CFS is estimated to affect more than 250,000 people in the UK, of all ages and from all social and economic backgrounds. A key feature, called post-exertional malaise, is a dramatic worsening of symptoms after minor physical effort. Other symptoms include pain, brain fog and extreme fatigue that does not improve with rest.

Scientists are still working to understand the causes of ME/CFS, although there is some evidence that infections can trigger the condition, while a recent study suggested that a protein may disrupt cells’ ability to generate energy. There is currently no diagnostic test or cure and doctors continue to be divided on the best way to help patients recover or manage symptoms.

The latest research analysed anonymous survey questionnaires from more than 17,000 people with ME/CFS. Two-thirds of women, and slightly more than half of men, reported at least one active 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, with clinical depression, fibromyalgia, anaemia and hypothyroidism 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 guidelines. Experts identified that being a woman and having ME/CFS for more than 10 years increased the risk of severe symptoms, which increase in intensity as people age.

“Our hope is that DecodeME’s genetic results will shed light on why certain groups are more susceptible to ME/CFS than others,” said Ponting.

Sonya Chowdhury, the chief executive of Action for ME and chair of the management group of the study, said: “These findings highlight the very serious impact ME/CFS has on women, who are disproportionately affected. It’s important to also recognise the impact that it has on men who have ME/CFS and we thank the 20,000 men and women who have already signed up to take part in this very important study.”

In the next stage of the study, the researchers hope to recruit further participants and analyse at least 20,000 individual DNA samples to explore whether there is a genetic component to ME/CFS.