Myalgic encephalomyelitis, also known as myalgic encephalomyelitis (chronic fatigue syndrome, ME/CFS), is a chronic disease with extreme fatigue and is extremely difficult to diagnose and affects multiple organ systems. The mechanism of its development is not fully understood, but it is usually linked to an infection (e.g. Epstein-Barr virus,
COVID-19).
ME/CFS often has symptoms that cannot be confirmed by medical laboratory findings, it is characterized by chronic fatigue that cannot be explained by other things, worsening with activity, which
can be associated with sleep disturbance, cognitive problems and many other symptoms. ME/CFS is more common in women, most commonly between the ages of 40 and 60, but can also occur in children and young people. The goal of treating ME/CFS is to alleviate symptoms because no specific drug or therapy is yet known.
Main symptoms of chronic fatigue syndrome
A disease-specific test for diagnosing ME/CFS does not currently exist. For this reason, it is very important to get to know the symptoms as accurately as possible (both on the part of the patient and the medical staff), since the primary task in diagnosing the disease is to clarify them and exclude other comorbidities.
The main symptoms of ME/CFS are as follows.
·
Significant decline in activity in both work and private life. There is a large, previously unexperienced, chronic fatigue that cannot be explained by strenuous activity or other pathologies, and does not improve with rest.
·
Post-exertional malaise (PEM). Symptoms worsen after physical or mental exertion. The extent of symptoms is excessive compared to the intensity of the exertion and often persists for days, weeks or even longer. It may not develop immediately, but later, between 12 and 48 hours after exertion, making it difficult to recognise the link between strain and PEM.
·
Sleep disorders. Those affected do not feel more rested after sleep, and symptoms do not show improvement. The appearance of various sleep disorders is also common.
·
Cognitive impairment.Symptoms may include
memory impairment, disturbances in attention and concentration,
speech disorder, difficulty thinking, difficulty solving complex tasks and inhibited psychomotor function (difficulty performing fine movements).
·
Orthostatic intolerance.In an upright (sitting or standing) position, unpleasant physical symptoms occur, the most common of which are increased heart rate and blood pressure (
Hypertonia). In addition, it is common for
fainting,
dizziness,
headacheand
nausea. Symptoms are typically relieved when lying down.
Non-diagnostic co-symptoms of ME/CFS may include:
·
muscle pain, joint pain (without swelling or redness);
·
headache (typically of a different pattern or intensity than previously experienced);
·
swelling of lymph nodes (in the neck or armpit area);
·
sore throat (often recurrent);
· gastrointestinal and urinary tract complaints;
· sensitivity to light, sound, smell, sensitivity to touch;
· shivering
night sweats;
·
visual disturbances;
·
nausea;
· development of a new allergy or sensitivity (
food intolerance,
drug sensitivity, sensitivity to chemicals).
Types of chronic fatigue syndrome
ME/CFS can be classified into types based on disease severity. However, these are often difficult to determine, as each symptom can manifest itself in different severity and change over time.
ME/CFS types may be as follows.
·
Mild ME/CFS. People suffering from a mild form are able to take care of themselves or do lighter household chores. Most people go to work or school, but it is common for them to give up leisure and social activities to avoid being overwhelmed. Many people are forced to work reduced hours, often taking time off or using weekends to cope with the rest of the week.
·
Moderate ME/CFS. People suffering from moderate forms typically have reduced mobility, and everyday life activities are already difficult for them. They are typically unable to perform at work and study, they need 1-2 hours of rest in the afternoon after performing their everyday tasks. Night's sleep is typically of poor quality.
·
Severe ME/CFS. People suffering from severe forms can only perform the simplest everyday tasks (e.g. maintaining individual hygiene: brushing their face and teeth). They have severe cognitive difficulties and their movements may be confined to a wheelchair. Often they can not leave the house, or only very rarely. They spend most of their time in bed, often extremely sensitive to light and sound.
·
Very severe ME/CFS. Those affected by a very severe form are bedridden throughout the day and need constant supervision and care. They also need help with personal hygiene and food, and are also very sensitive to sensory stimuli. It may also happen that the patient is unable to swallow, so it is necessary to feed him with a tube.
Possible causes of chronic fatigue syndrome
The exact cause of chronic fatigue syndrome is unknown, but it is believed to be caused by a combination of factors.
The reasons involved in the development of ME/CFS may include the following.
·
Infections. Common before illness
flu-likeexperiencing symptoms. Among others, the Epstein-Barr (see:
Herpesvirus infections), a Ross River-, a Coxiella burnetii- (lásd:
Q fever) and coronavirus infection have been linked to ME/CFS.
· I
mmune system changes. Altered immune functions cause the body to react differently to viral infections and
stress. The dysfunction of the immune system is indicated by the fact that the syndrome is associated with an increase in inflammatory markers, an increase in cytokine production, a decrease in the function of NK cells and changes in T-cell activation can be detected.
·
Change in the level of stress hormones. Levels of stress hormones (e.g. cortisol) affect immune function, digestion, energy expenditure and mood. Although ME/CFS often has cortisol levels below the population average – however, this is typically within limits and therefore has no diagnostic value, and no clear correlation can be established.
·
Genetic causes. Although the exact genetic mutation is not known, which is clearly related to the development of the disease, in some cases family accumulation can be observed.
Diagnosis of chronic fatigue syndrome
Diagnosing ME/CFS is extremely difficult because its symptoms may overlap with many other diseases, and there is no test that can definitively detect it.
For this reason, in many cases those affected are misdiagnosed or not diagnosed at all.
In recent years, several different sets of criteria have been developed that may differ slightly in exactly which symptoms are essential to make a diagnosis. Based on criteria established by the
American Academy of Medicine in 2015, the appearance of the following symptoms is a diagnostic criterion:
significant decrease in activity, PEM and sleep disorders (non-restful sleep). In addition,
at least one of the symptoms of cognitive impairment
and orthostatic intolerance is required.
Additional tests that may be used to diagnose ME/CFS may include:
· complete
physical examination;
· examination of mental status using cognitive tests;
· 'tilt table test' means the study of changes in blood pressure and heart rate following a rapid change in a person's position (tilting the table from landscape to landscape);
·
laboratory tests: liver and kidney function, inflammatory markers, HbA1c, thyroid panel, iron, etc.
Treatment of chronic fatigue syndrome
There is currently no approved drug or specific therapy for ME/CFS, treatment is limited to minimizing symptoms and improving quality of life. Treatment is completely individualised – this requires the patient, their family and healthcare staff to work closely together to determine which symptoms cause the greatest difficulty in everyday life.
During the treatment of the disease, most of the symptoms can be reduced
by changing lifestyle factors,
nutritional supplements and, if necessary,
appropriate medication.
During the course of therapy, it is important to
avoid PEM. The patient should be helped to keep his energy use within limits that do not yet trigger the PCA. Keep a diary of activities and symptoms for 1-2 weeks, after which they are evaluated together with your doctor looking for patterns in the symptoms (e.g. reading for an hour may trigger PEM after 48 hours, but 30 minutes may not cause it – in this case, the patient's maximum energy expenditure is 30 minutes for reading). Subsequently, the activities shall be adjusted so that they do not induce a PCA. This is often difficult, as patients tend to overwhelm themselves after a lighter, good day.
Prevention of chronic fatigue syndrome
Based on the current knowledge of medical science, ME/CFS cannot be prevented, so timely detection and symptomatic treatment play an important role in reducing symptoms.
Chronic fatigue syndrome in childhood
ME/CFS can also occur in children and adolescents. In them, the main symptoms are similar to those in adulthood, but more common is the presence of orthostatic intolerance, which is the symptom that most affects the quality of life in this age group. Joint and muscle pain is less common, but headaches and gastrointestinal symptoms are more common.
In school-age children, the disease often leads to neglect of school and other tasks. In many cases, parents may think of this as truancy, but the young people concerned begin to neglect not only the obligatory tasks, but also their own hobbies and social events!
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