150,000 French people suffer from chronic fatigue syndrome (CFS), a disease unknown to the general public that generates real suffering on a daily basis and from which more adolescents suffer than we thought.
Chronic fatigue syndrome (CFS), also called “myalgic encephalomyelitis” affects some 150,000 people in France. Very heterogeneous, this syndrome (of biological and not psychological origin) which results in intense physical and mental fatigue, difficulty concentrating, limited reaction times, headaches and sometimes muscle pain remains to this day a mystery to the scientific community. This is why there is no cure yet.
CFS is characterized when the state of fatigue persists after rest, for at least 6 months. The World Health Organization (WHO) ranked it tenth on its list of official international diseases in the 1990s, among neurological diseases. This classification thus allowing the recognition of a handicap and a real daily suffering.
“I was in great shape before and overnight, I had to stop working, says a patient to 20 minutes. Ditto for my hobbies. In the morning when I wake up, it is as if my battery is only 15-20% charged. I have to moderate my efforts because if I do too much, I know that I will pay for it and that I will have to stay several hours in bed to rest ”.
Adolescents also concerned
In 2016, a study published in the scientific journal Pediatrics showed that the disease would be more prevalent in adolescents than previously thought. According to researchers, chronic fatigue syndrome affects nearly 2% of 16-year-old adolescents, or one in fifty, over a period of at least six months. It also affects 3% of them over a period of at least three months.
The adolescents studied missed an average of half a day more than their peers. “As doctors in contact with children, we must become much more efficient in making the diagnosis of chronic fatigue, in particular in children from underprivileged backgrounds, who have less access to specialist doctors,” said Dr Esther Crawley at the time. , one of the authors of the study.
What are the causes of chronic fatigue syndrome?
Difficult to find the exact cause of this pathology. In 2014, a small study published in the American medical journal Radiology argued that people with CFS had brain abnormalities. To reach this conclusion, researchers at the Stanford School of Medicine (California) performed magnetic resonance imaging (MRI) on fifteen patients with this syndrome and on a control group of fourteen healthy people.
Comparison of the different results revealed that people with chronic fatigue syndrome have a slightly lower volume of white matter. They also have an abnormal diffusion of water molecules into part of the white matter of the right cerebral hemisphere. Finally, the researchers found in subjects suffering from this syndrome had abnormalities in two parts of the brain that connect the frontal lobe and the temporal lobe. “The more these two parts of the brain are abnormal, namely thicker in their appearance, the more severe the symptoms,” Dr Michael Zeineh, assistant professor of radiology at Stanford School of Medicine, told AFP.
Last August, a study from Stanford University (United States), published in PNAS, suggested that the origin of CFS could be inflammatory. In November 2017, dHowever, researchers have succeeded in determining that people with CFS have very specific variations in their level of microRNA, molecules responsible for regulating the production of proteins from genes.
More recently, in March, dhe Dutch researchers have published the results of a study on this syndrome in Frontiers in Endocrinology. According to them, the chronic fatigue syndrome could be explained by a hormonal imbalance and in particular the level of triodothyronine (Low T3 syndrome). The study involved 98 patients with chronic fatigue and 99 healthy people. Scientists compared their thyroid functions and the different markers of inflammation. Patients with chronic fatigue had lower levels of some thyroid hormones compared to others, such as thyroxine or triiodothyronine. But no study can confirm with certainty the origin of these symptoms.
Poorly understood, poorly treated, chronic fatigue syndrome is a real handicap on a daily basis that prevents thousands of people from working. “I am no longer able to work and I do not know if I will be so again one day”, explains Karine to The voice of the North. At 46, this woman suffers from severe joint and muscle pain, so much so that sitting or standing up made her suffer.
The Millions Missing association opens a branch in France
In recent days, a French branch of the Millions Missing association – which helps patients and communicates about the disease – has opened in Châteaubourg, near Rennes. “It is important to publicize this disease. Many patients suffer from isolation because no one believes them. There are also all the prejudices linked to this disease as what it is laziness or then a burn-out “, explains a patient to 20 minutes.
About fifty people were able to meet thanks to this antenna to watch the film Unrest, a documentary recounting the daily life of a 28-year-old American patient. The association’s Facebook page published some hot reactions: “We understand better what patients are going through, and their relatives!” Https://www.pourquoidocteur.fr/ “I think that it could have opened the eyes of people on a disease almost invisible from the outside, on a poorly identified syndrome. “https://www.pourquoidocteur.fr/” I really hope that science will advance research into the mechanism of the disease in order to understand how the to treat.”
An international day of chronic fatigue syndrome will take place on May 12 in Lyon. A round table around the documentary Unrest will be organized with doctors from the Scientific Council of the CBSA, followed by scientific news and a General Assembly at the St Joseph St Luc hospital center.
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