This disease, which is characterized by a general feeling of tiredness or exhaustion and affects mostly women, has several stages and can cause permanent disability.. Rosa Magallón, researcher at the IIS Aragón, explains it
Often, patients - mostly women - who suffer from the chronic fatigue syndrome or myalgic encephalomyelitis They face a long journey of doctors to find the diagnosis of this chronic disease that limits their quality of life and incapacitates them. "They are patients who do not pretend, they suffer, and they are still not believed"hold Rosa Magallón, researcher at the IIS Aragón and primary care physician who leads a pioneering study in this line, in collaboration with Asafa and the Aragonese Primary Care Research Group (Gaiap) of the IIS Aragón.
«We have presented a project to the Government of Aragon to establish synergies and parallels of genetic markers, symptoms and modes of illness between fibromyalgia, chronic fatigue syndrome and long-term covid, and we are very happy, especially the patients, because We will be able to work with sufficient resources to find out the cause of the persistence of the symptoms.", Explain.
Rosa Magallón, researcher at the IIS Aragón and primary care physician
Lack of knowledge and stigma have meant that diagnosis of this pathology takes an average of eight years.Since there are no markers or tests, it affects women and has non-specific symptoms, they are stigmatized towards psychosomatic symptoms. Historically, little attention has been paid to them and what we demand as societies and scientific groups is to support them so that there are multidisciplinary teams that work and address these patients," says Rosa Magallón. The researcher also advocates overcoming prejudices in clinical practice. "Many times, professionals We are afraid of labeling people, and it is the other way around. "Giving it a name gives them a lot of relief."
Family doctors are responsible for detect this disease in primary care consultations following defined diagnostic criteria, but not known to everyone. «In order to diagnose it, The patient must have had symptoms for at least six months for the most severe criteria. If I see a patient, I will diagnose him quickly because I know how to identify the disease. The problem is that since it is not known or doctors do not know how to diagnose it… When I started, there were patients who had taken 10 years to be diagnosed. The average now I would say it is not that much, and in about three months they achieve it," explains the doctor. Eve Martin a Valencian family doctor who also has his own private practice to treat the most severe cases.
Among the warning signs, he cites a “limiting fatigue that does not improve” and a series of associated symptoms that can often be confused with other diseases, such as fibromyalgia or the after-effects of long-term Covid.
«To these patients You test them and rule out other diseases that could cause similar pathologies.. You apply those diagnostic criteria and if they are met, you diagnose chronic fatigue syndrome or myalgic encephalomyelitis.
Eva Martin, family doctor
Differences in fibromyalgia
Although fibromyalgia and chronic fatigue syndrome They are two diseases that sometimes occur in the same person, experts emphasize the differences between the two pathologies.They have many symptoms that may look alike, but they have different diagnostic criteria. and the associations usually go together because there are patients who have that comorbidity," adds Martín.
Family doctors insist on the importance of differentiating them because the way of approaching them changes. «Unfortunately, neither of them has a curative treatment, but they do go hand in hand. Fibromyalgia is the pain disease par excellence. A disabling pain that is associated with fatigue, but without intolerance to effort. The fatigue of a patient with fibromyalgia is like if I were 40 years old and I felt like a 90-year-old person, who can do fewer things, but what I can, I can do. In myalgic encephalomyelitis, the main thing is fatigue, not pain. And it is a fatigue with intolerance to effort."They have a limited capacity and if that capacity is exceeded, the disease and its symptoms will worsen," warns this doctor.
The truth is that Very few doctors know how to identify them in their early stages. The pathology, which until the 90s was burdened with "stigma", as several affected patients lament, is classified as neurological, but as it does not have a marker it has been burdened for years with negative and psychological connotations. "Little attention has been paid to it", this doctor acknowledges.
«It is not taught in universities and if it is taught, the true severity of it is not taught. You're either in it or you don't know how to diagnose it.
Eva Martin, family doctor
Although the differences are not clear, fibromyalgia is predominantly pain-related, and chronic fatigue is predominantly asthenia or generalized weakness, but both have the same symptoms. "This is difficult to objectify through a test, Sometimes it is a diagnosis of exclusion, and others are accompanied by psychological symptoms. Imagine that you have been in pain for two years, in the end you get depressed., confesses Dr. Magallón. Behind this unexplained discomfort, she points to the "lack of research" and the inability to offer them a multidisciplinary symptomatic treatment.
«One also adapts to chronicity, but we are here to help them»
Rosa Magallón, researcher at the IIS Aragón and primary care physician
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