Juana Montero is always tired. She has no strength to stand for more than two minutes and many times she is not able to shower herself. Any minimal physical or mental effort can leave her trapped in a bed for a full day and even weeks. Your fatigue does not reduce with rest .
When you have enough energy you can drive, sit on a bench and drink something in a place without noise. The problem is finding who to meet. No one believes their symptoms or simply thinks they are invented. This is the reality of Juana and many patients suffering from chronic fatigue syndrome , also known as Myalgic Encephalomyelitis (CFS / MS). An illness misunderstood and commonly related to a mental problem. Nothing could be further from the truth. Different studies and researchers support the existence of a biological factor behind this pathology . More recently, a group of researchers from Stanford University (United States) found a biomarker, through a blood test, which has accurately identified the patients with CFS / MS of healthy subjects.
CFS / ME is a medical condition characterized by prolonged and disabling chronic fatigue that lasts for a minimum of six months , not associated with any other existing disease. About 25% of the most serious patients are confined in bed or at home. A pathology that, together with other persistent symptoms, limits the functional capacity and activities of the daily life of those who suffer from it. Worldwide, it is estimated that up to 25 million people suffer from the disease. Although epidemiological studies are not available in Spain, its prevalence is estimated in about 46,000 cases throughout the country . The big problem is that most of them still have no diagnosis, since there are hardly any clinical units or medical specialists.
A pathology that showed its first teeth to a young Joanna of 25 years, when she shared her time between studies and work. «I took vacations to study. One day I studied well and the next morning I couldn’t even understand three words. I was very angry, ”says Juana. Not only his mind failed, his body too. “He went out a lot to walk, to the countryside. After walking, my legs were shaking a lot. It didn’t happen to anyone else. As Jesús Castro, a researcher at the Central Awareness Syndromes Unit of the Vall d’Hebron University Hospital in Barcelona, explains, the fatigue of these patients is very different from that of a healthy person. «We talk about extreme fatigue, which does not improve with rest and may even force patients to stay in bed for a few days for minimal physical exercise and / or mental effort ».
It is what is known as post-effort discomfort . «With minimal efforts, all the symptoms in the patient are exacerbated or exacerbated. They have an intolerance to physical or mental effort, which distinguishes it from the rest of the pathologies associated with secondary chronic fatigue, such as multiple sclerosis, lupus, hypothyroidism, etc. ». This discomfort can be activated in activities as mundane as cutting potatoes or showering. As is the case with Juana. «I can’t take a shower every day. I have been showering on a sidewalk since 2007. In the best days I can only stand for two minutes. Even sitting in the shower you get really bad. I can’t stand cold water and if it’s hot I get dizzy, sweating and nauseous.
The problem is not in the mind
The cause of CFS / MS is still unknown . All the problems that Juana suffered in her youth were attributed to anxiety and depression, as well as mental disorders. “At first I believed it because I had a stressed pace of work and study, but when I stopped I never recovered.” In the absence of answers he tried all kinds of therapies, he even resorted to spiritual healers. Nothing worked Neither does psychiatric treatment. “He offered me drugs of all kinds, such as antidepressants, anxiolytics and antipsychotics that only made me worse.” His problem was not in his mind.
«CFS / MS is not a psychological disease. More and more biomarkers are being found to prove it. However, some psychiatrists or doctors still think that it is something they have in their heads, ”says Castro. Currently, biomarkers associated with neurometabolic and immune cell disorders are being investigated. “It is clear that there is some type of neuroimmune disorder that is causing the appearance of the vast majority of these symptoms.”
As for research, the most relevant has been the finding of the biomarker, through a blood test, by the Professor of Biochemistry and Genetics, Ronald Davis, and his team at Stanford University. «If this diagnostic test is validated, it can not only serve as a diagnostic tool, but also as an aid in the search for effective drugs against the disease».
These medications should not only combat Juana’s fatigue, but also other symptoms that she has to live with in her day-to-day life, such as her sleeping problems or her hyperacute . That is, the reduction of the threshold of tolerance of ambient sounds. At 54, he has an assistant who helps him with his daily tasks two days a week. He hopes that with the advances achieved and those that are to come, the pathology will be visible.