Women suffer more from ME/CFS, study finds

According to preliminary findings from the world’s largest ME/CFS study, women experience greater symptoms and co-occurring disorders than men. Women are more likely than males to suffer ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), but the DecodeME study has revealed for the first time how their experience differs.

The study found that women who have had ME/CFS for more than 10 years are more likely to develop increasingly severe symptoms as they age. ME/CFS is a long-term neurological disorder in which an abnormal rise in symptoms can be caused by typical amounts of effort. The study’s preliminary findings have been published in NIHR Open Research.

According to experts, the first step in developing viable treatment choices is gaining a greater knowledge of how ME/CFS affects patients.

To help their efforts, the University of Edinburgh study team is inviting more persons with ME/CFS, aged 16 and up, who live in the UK, to participate in the study.

Experts examined anonymous survey questionnaires from around 17,000 ME/CFS patients. They asked how long the responder experienced ME/CFS symptoms, when they were diagnosed, and if they had any co-occurring disorders.

The study verified the well-known gender bias among ME/CFS patients, with women constituting 83.5% of responses.

At least one active co-occurring ailment was reported by two-thirds (66.7%) of women and slightly more than half (52.7%) of men. Likewise, 39.2% of women and 28.6% of men reported having at least one inactive co-occurring ailment.

A condition was considered active if the subject exhibited symptoms within the previous six months.

Irritable bowel syndrome (41.3%) was the most common active co-occurring disorder, followed by clinical depression (32.4%), fibromyalgia (29.5%), anemia (14.1%), and hypothyroidism (12.8%).

Women also reported 42 symptoms on average, compared to 36 for males.

The most common of these symptoms were brain fog (a term commonly used to describe individuals’ cognitive impairment), unrefreshing sleep, and muscle soreness.

Participants were also asked to identify the severity of their disease using classifications from the UK’s National Institute for Health and Care Excellence (NICE) standards, ranging from mild to extremely severe.

Being a woman and having ME/CFS for more than 10 years, according to experts, are risk factors for severe illness, with symptoms worsening with age.

The study team hopes to enroll 6,000 more people to deepen their understanding of the disease. People suffering from ME/CFS can register at www.decodeme.org.uk/portal/.

The next stage of the experiment will involve scientists studying at least 20,000 individual DNA samples to determine whether the disease is partially inherited and, if so, to investigate its source.

ME/CFS is thought to afflict about a quarter of a million people in the UK, of all ages and socioeconomic origins.

Its distinguishing feature, known as post-exertional malaise, is a delayed severe development of symptoms after little physical exercise. Pain, brain fog, and significant energy limitation that does not improve with rest are some of the other symptoms. There are no known causes, and there is currently no diagnostic test or cure.

The study includes the charity Action for M.E., the Forward M.E. coalition of UK organizations, and people who have experienced the condition, in addition to the University of Edinburgh.

Professor Chris Ponting, study lead from the MRC Human Genetics Unit at 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. Our hope is that DecodeME’s genetic results will shed light on why certain groups are more susceptible to ME/CFS than others.”

Sonya Chowdhury, Chief Executive of Action for M.E. and Chair of the Management Group of the study, added, “These findings highlight the very serious impact ME/CFS has on women who are disproportionately affected. It’s important to also recognize 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.”

“But we still need more to join us so if you are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME at www.decodeme.org.uk/portal .”

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