What is chronic fatigue syndrome and how it affect mental health?
Chronic fatigue syndrome , also known as myalgic encephalomyelitis (ME/CFS), is a chronic, complex, and profoundly debilitating illness that affects much more than physical energy. Although often associated with "tiredness," this label is clearly insufficient: it is a systemic condition that can significantly impair a person's physical, cognitive, and social functioning .
ME/CFS has been recognized by the World Health Organization as a neurological disease since 1969 and is currently included in the International Classification of Diseases (ICD) under post-viral fatigue syndromes. Despite this formal recognition, it remains one of the most misunderstood illnesses , both socially and within the healthcare system. However, this disease can radically transform a person's life, affecting not only the body but also the mind, emotions, and ability to participate in daily life.
A systemic disease with a physiological basis
Chronic fatigue syndrome is characterized by intense and persistent fatigue that is not relieved by rest and worsens after physical or mental exertion, a phenomenon known as post-exertional malaise. This worsening is not proportional to the activity performed and can have a delayed impact, further complicating the management of the illness.
Chronic fatigue syndrome involves persistent tiredness, sleep disturbances, cognitive difficulties, pain, orthostatic intolerance, and hypersensitivity to stimuli.
This core symptom is usually associated with sleep disturbances, cognitive difficulties (often described as "brain fog"), pain, orthostatic intolerance, and hypersensitivity to stimuli. Its intensity can vary greatly, but in the most severe cases , it can lead to almost total dependence.
Although no single cause has been identified, research in recent years has provided increasing evidence of physiological dysfunctions in different body systems . Alterations in the immune system, dysfunctions in the regulation of the autonomic nervous system, abnormalities in energy metabolism, and changes in brain function, among others, have been described. In a significant proportion of cases, the onset of the disease is associated with a prior infection , which has reinforced the hypothesis of a post-infectious origin in some subgroups of people.
In this context, the COVID-19 pandemic has played a key role in highlighting these dynamics: a significant proportion of people with long COVID present symptoms consistent with ME/CFS, especially post-exertional malaise. This has helped solidify the idea that we are dealing with a disease with a complex, though not fully understood, biological basis.
Invisibility, misunderstanding, and emotional consequences
One of the most difficult aspects of managing ME/CFS is its invisibility . Often, there are no obvious external signs that reveal the extent of the impairment. This can lead to misunderstandings in personal, professional, and healthcare settings, and even doubts about the legitimacy of the illness.
This context of invalidation has a direct impact on emotional well-being. Not being believed, seeing one's symptoms minimized, or having to constantly justify one's condition can generate significant psychological strain. In these cases, emotional suffering stems not only from the illness itself but also from the response of those around them.
Not being believed, seeing how the symptoms are minimized, or having to constantly justify one's condition can generate significant psychological strain.
Furthermore, the difficulty in obtaining a diagnosis— still common today—can prolong this situation. Although thousands of people have been diagnosed, significant underdiagnosis is considered to exist, meaning that many people live with the disease without recognition or adequate support.
When life changes: impact on emotional well-being
Living with ME/CFS often involves a break with one's previous life . The reduction in functional capacity can affect central aspects such as work, studies, social relationships, or the most basic daily activities. This loss of autonomy is not temporary, but rather sustained over time and often unpredictable.
The inability to maintain a stable routine, the need to limit activities, or the fear of getting worse can generate a constant feeling of uncertainty . Planning becomes difficult, and the degree of control over one's own life diminishes. This scenario can foster anxiety , especially related to uncertainty and managing boundaries.
In turn, physical and cognitive limitations can lead to progressive social isolation. Reduced participation in activities, coupled with the difficulty others have in understanding the illness, can affect relationships and generate feelings of loneliness.
The reduction in functional capacity can affect central aspects such as work, studies, social relationships, or the most basic daily activities.
In this context, it is also common to experience emotions such as frustration, anger, or sadness , especially associated with the loss of projects, roles, or future expectations. This process resembles, in many ways, a grieving process for a life that can no longer be sustained in the same way.
Relaxation techniques as a therapeutic approach for anxiety
Mental health problems, a consequence of the illness
One of the most important aspects to clarify is the relationship between ME/CFS and mental health . As with many chronic illnesses, affected individuals may experience symptoms of anxiety or depression . However, it is crucial to understand that these symptoms are not the cause of the illness.
Historically, in the absence of clear markers, these manifestations have tended to be interpreted as the origin of the problem. We recall that this occurred decades ago with multiple sclerosis, for example. This interpretation is not only incorrect in most cases, but it can also have negative consequences: it can delay diagnosis, hinder access to appropriate care, and increase stigma.
Today, with the knowledge available, it is increasingly clear that emotional distress often arises as a response to a life-altering situation : living with a debilitating, poorly understood illness with an uncertain prognosis. Understanding this is key to providing respectful care tailored to the realities of those affected.
Small achievements to move towards well-being
The role of accompaniment
In this context, psychological support can be a valuable tool for improving emotional well-being, provided it is based on a clear understanding of the physical nature of the illness. This support does not aim to "cure" the illness, but rather to help individuals live with it: facilitating adaptation to changes, addressing self-imposed demands, managing the emotions associated with loss, and strengthening identity beyond the illness.
When this support is given with validation and understanding, it can help reduce emotional suffering and improve quality of life.
ME/CFS is a complex illness that profoundly impacts multiple dimensions of life . Its effect on mental health cannot be understood in isolation, but rather as part of a global experience marked by limitation, uncertainty, and, all too often, misunderstanding.
Making this reality visible is an essential step to break stigmas, improve care and move towards a model that integrates, without confusing, the physical and emotional dimensions of the disease.
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