Tiredness that does not improve even after a night’s sleep, feeling unwell after physical or mental efforts, difficulty organizing ideas and even standing up. These are symptoms that, if they persist for more than six months, suggest a little-known illness that has been experienced by some people after pregnancy. Covid-19: CFS (chronic fatigue syndrome), also called myalgic encephalomyelitis.
Far from being mere laziness, the disease imposes a limitation that can be severe, in addition to having symptoms that can easily be confused with other conditions, such as depression, burnout, hypothyroidism, anemia and vitamin D deficiency, for example.
Doctor Roberto Heymann, a member of the Fibromyalgia Commission of the SBR (Brazilian Society of Rheumatology), explains that there are only theories about the causes of CFS, one of which is infectious diseases.
“At one time there were many cases of mononucleosis [doença causada pelo vírus Epstein-Barr] that the person later developed chronic fatigue. Now, with Covid-19, there’s post-Covid, which one of the symptoms is important fatigue, cognitive disorder…”
Cytomegalovirus, the bacterium that causes Lyme disease, and the fungus Candida albicans (which causes candidiasis) have also been mentioned in studies of CFS, according to the MSD Manual of Diagnosis and Treatment, although the relationship has not been fully established.
The expert raises the question of whether infection by a pathogen is the cause itself or whether it is a trigger in people predisposed to developing chronic fatigue, something that still needs to be answered by science.
“Chronic fatigue syndrome is also described after long periods of stress at work. In the past, there was a lot of talk about chronic fatigue in extremely perfectionist people, great workers, people who held high positions in corporations, with significant stress. It’s like a burnout. Now, if you ask yourself: what is the difference between chronic fatigue syndrome and burnout? It’s something difficult to say”, he exemplifies.
Another factor to which Heymann draws attention is the overlap of diseases. According to him, it is common for CFS patients to also be depressed, which makes the diagnosis even more complex.
“An extremely active person who suddenly started to have fatigue and developed a condition of depression, we could call it chronic fatigue syndrome”, he argues, emphasizing the importance of also treating the depressive condition.
In depression, there is negative thinking, lack of perspective and lack of motivation. In chronic fatigue syndrome, the person may even want to, but cannot do the tasks, as there is a deficit in reasoning and memory, described as “brain fog”.
Main features
Although the diagnosis of CFS is by exclusion – the doctor will rule out a number of other possible diseases through tests or clinical evaluation –, certain criteria are taken into account when this syndrome is suspected. They are as follows:
• Major tiredness that persists for at least six months in a person who did not have this complaint before;
• Being tired most of the day;
• Fatigue that worsens with physical activity or mental exertion;
• Difficulty concentrating, learning, reasoning or memory;
• Dizziness when standing;
• Sleep problems and waking up feeling tired (non-restorative sleep).
“Although up to 25% of people report experiencing chronic fatigue, only 0.5% of people (1 in 200) have chronic fatigue syndrome,” adds the MSD Handbook citing North American data.
In the United States, the CDC (Centers for Disease Control and Prevention) estimates that between 1 million and 2.5 million people suffer from CFS, but points out that “many people have not been diagnosed”.
Among the reasons for this, the agency points out the limited access to health services and even the lack of knowledge of professionals in the area about chronic fatigue syndrome.
“The disease is often misunderstood and may not be taken seriously by some healthcare professionals,” the CDC says on its website.
Treatment
Because it is a disease that affects several areas of the body, the treatment of chronic fatigue syndrome also involves several specialties. There are no specific remedies.
A 2011 study points to CBT (cognitive behavioral therapy) and TEG (graded exercise therapy) as beneficial for patients diagnosed with the syndrome, compared to those who received only medical care.
“The main treatment is to try to put the person in a kind of gradual exercise program, that is, in which he gradually increases the intensity of the exercises. It is not an easy thing for an individual whose disease is characterized precisely by tiredness. extreme,” adds Heymann.
In addition, the doctor will treat the other symptoms individually, such as changes in sleep, possibly orthostatic hypotension, which causes dizziness when standing, among others.
The most important thing, according to the SBR specialist, is to know that there is a possibility of resuming a normal life after the diagnosis of chronic fatigue syndrome, but it requires effort and time.
“Sometimes this disease can go away the same way it came or it can stay for the rest of your life. Treatment is often difficult, but it can go away. In some people, there are periods of improvement and periods of worsening.”