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Women with myalgic encephalomyelitis/chronic fatigue syndrome for more than 10 years are more likely to have increased severity in their symptoms as they age.
Women with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) tend to have more symptoms and co-occurring conditions compared to men, according to results from a DecodeME study.1,2
The study, published in NIHR Open Research, is the first to show how women’s and men’s experiences with ME/CFS are different.1
“ME/CFS is a long-term neurological condition where an excessive increase in symptoms can be triggered by normal levels of exertion,” according to a press release.1 According to the CDC, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most have not been diagnosed.3
Those with ME/CFS are often unable to do their daily activities. Sometimes, the symptoms are so severe that the individual is confined to bed. The individuals often have severe fatigue and sleep problems, usually worsening when they try to be as active as they want or need to be. Other symptoms of ME/CFS include trouble with thinking and concentration, pain, and dizziness.3
The study authors found that women with ME/CFS for more than 10 years are more likely to have increased severity in their symptoms as they age.1
The DecodeME study is a large population-based study of ME/CFS. The study investigators analyzed anonymous survey questionnaires for more than 17,000 individuals who have ME/CFS, including information on how long the individual has had ME/CFS symptoms, when they were diagnosed, and if they had co-occurring conditions.1,2
The United Kingdom’s National Institute for Health and Care Excellence defined severity illness, so individuals who responded to the study could rate the severity of illness from mild to very severe.1
ME/CFS has been reported to be more prevalent in women, which was confirmed by the study results with 83.5% of individuals who responded to the survey being women. Five different ME/CFS onsets were examined: after glandular fever; after COVID-19 infection; after other infections; without an infection at onset; and unknown occurrence of an infection or preceding onset.2
Approximately 66.7% of women and 52.7% of men reported at least 1 active co-occurring condition. Conditions were considered active if the individual experienced it within the 6 months prior to the survey response. Additionally, 39.2% of women and 28.6% of men reported at least 1 inactive co-occurring condition.1
The study authors found that the most common active co-occurring condition was irritable bowel syndrome in 41.3% of individuals, clinical depression in 32.4%, fibromyalgia in 29.5%, anemia in 14.1%, and hypothyroidism in 12.8%.1 The study authors also found that the onset of ME/CFS with unknown infection status was significantly associated with active fibromyalgia.2
On average, they also found that women reported more symptoms compared to men at 42% and 36%, respectively. The most common symptoms included brain fog, unrefreshing sleep, and muscle pain.1
The investigators plan on recruiting a further 6000 individuals to the study. For the next stage, the experts will study at least 20,000 individual DNA samples to determine whether the disease is partly genetic, and if so, they plan to research the cause.1
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