It has long been known that women are more likely to have ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) but the DecodeME study has shown for the first time how their experience differs from men.
The study reveals that women who have ME/CFS – a long-term neurological condition where an excessive increase in symptoms can be triggered by normal levels of exertion – for more than 10 years are more likely to experience increasingly severe symptoms as they age.
Experts say that gaining a better understanding of how ME/CFS affects people is the first step to developing effective treatment options.
Large study
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.
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.
Sex bias
The study confirmed the well-established sex bias amongst ME/CFS patients, with women making up 83.5 per cent of respondents.
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.
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 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.
Severe symptoms
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.
Experts identified that being a woman and having ME/CFS for more than 10 years are risk factors for
severe illness, with symptoms increasing in intensity as they age.
Genetic link
To increase their understanding of the disease, the study team want to recruit a further 6000 participants to the study.
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 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.
Professor Chris Ponting
Study lead, from the MRC Human Genetics Unit at the University of Edinburgh’s Institute of Genetics and Cancer 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.
As well as the University of Edinburgh, the study involves the charity Action for M.E., the Forward M.E.
alliance of UK charities, and people who have experienced the condition.
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. 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.
Sonya Chowdhury
Chief Executive of Action for M.E. and Chair of the Management Group of the study
The study is funded by the Medical Research Council and the National Institute for Health and Care
Research.