«For a long time, people didn't even really believe in the existence of this disease»
Women «suffer more from chronic fatigue syndrome,» says the largest ever study on the disease. A new study on myalgic encephalomyelitis, sometimes referred to as chronic fatigue syndrome, aims to learn more about the condition and how it can be treated. Initial results suggest that this syndrome affects women more.
According to the initial results of the largest ever study on this disease, women are not only much more likely to suffer from chronic fatigue syndrome, but also more likely to have more symptoms and associated conditions that are more severe.
According to Sky News, more than 17,000 people in the UK diagnosed with ME (myalgic encephalomyelitis), sometimes referred to as chronic fatigue syndrome, have participated in the DecodeME study so far.
Researchers intend to study 20,000 DNA samples from this a growing group to find out if myalgic encephalomyelitis is partly genetic. This can not only point to treatments, but also help dispel the hoax of a neglected and often maligned disease.
«For a long time, people didn't even really believe in the existence of this disease,» says study lead author Professor Chris Ponting of the University of Edinburgh. – The fact that this study is looking into the biological causes of myalgic encephalomyelitis, I think it will go a long way to not only help people eventually find a cure, but also to debunk some really harmful stereotypes.»
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More than 250,000 people in the UK are estimated to have myalgic encephalomyelitis. This disease leads to debilitating and persistent exhaustion in patients, which is exacerbated by normal levels of exercise.
But chronic fatigue syndrome also causes a wide range of other symptoms, such as brain fog, muscle pain, and even slurred speech. Many people stay at home or are bedridden because of their illness.
Of the study participants, more than 83% are now women, Sky News highlights.
The women in the study were also significantly more likely to have one or more conditions associated with their myalgic encephalomyelitis, such as irritable bowel syndrome, fibromyalgia, or anemia than men.
By combining these results with the genetic data they are collecting, the researchers hope to gain insight into why myalgic encephalomyelitis affects different groups of people, how it affects people, and what its potential triggers might be.
Many cases of chronic fatigue syndrome , for example, preceded by some kind of infection, a similar phenomenon has been observed in people with long-term COVID.
Initial results, says Professor Ponting, suggest that their genetic analysis will have to treat men and women differently.
The gender bias may also indicate why myalgic encephalomyelitis has been neglected for so long, despite the fact that this disease has affected a huge number of people.
There is strong evidence from other diseases that suggests that those diseases that affect women, less research and drugs are being devoted, notes Sky News.
“The real bottom line is that for many years people working with myalgic encephalomyelitis have been really stigmatized and abused,” says Sonia Chowdhury, executive director of Action for ME. The charity coordinated recruitment for the study and hopes this first large-scale investigation will change the way we think about chronic fatigue syndrome.
«Having basic data and basic science means researchers are more likely to take the disease seriously.» , says Ms Chowdhury. «We should be shocked that there has been no investment in research for decades.»
Pippa Stacy was first diagnosed with myalgic encephalomyelitis, according to Sky News. at the age of 19, and she now blogs and campaigns about her illness. She videotaped giving her DNA sample to DecodeME and shared it with her 14,500 Instagram followers to encourage others to do the same.
"Knowing there is work of this magnitude underway is a huge thing in itself,” she says. — I feel some hope that there is something to strive for.