Chronic Fatigue Syndrome: 8 facts that prove to be serious
At the American Arthouse Festival 2A17, starting today in Moscow, will show the documentary "Nepokoy" ("Unrest"), director, scriptwriter and the main character of which Jennifer Brea is a man with chronic fatigue syndrome. We watched the film and tell us what kind of illness it is, for whom it is more common and why the very name of the syndrome makes the life of people with it even more unbearable.
Damn it at work has nothing to do with it
The main manifestation of the syndrome is a constant pronounced weakness, when a person is difficult to move or do any familiar actions that previously did not cause difficulties. “Permanent” means that fatigue has been felt for at least six months in a row — although, unfortunately, usually it takes more time to make a diagnosis. The severity of the syndrome can be different: someone continues to go to work, although this is done with great difficulty. About a quarter of patients are bedridden, if not to the bed, then to the house, from where they stop going out.
A very common symptom is pain (in the muscles, joints, or headache). There are also signs similar to the onset of a cold: sore throat, chills or swollen lymph nodes. In severe cases, episodes similar to a migraine occur when any stimulus like light or sound provokes pain. As a result, the whole life can turn into an almost round-the-clock stay in a dark room - agree, it is not at all the case when you are tired of working and dream of changing the situation for a couple of weeks.
It is difficult to diagnose
Chronic fatigue syndrome has practically no objective clinical manifestations that could be recorded, for example, on an ECG or in a blood test. To make a diagnosis, the doctor has to rely solely on the patient's complaints. Of course, at the same time it is necessary to exclude such possible causes of persistent weakness, such as infections or neoplastic processes, and, therefore, to conduct many examinations.
But when it is clear that there are no objective changes, it becomes even worse - a person may begin to suspect mental illness, and even say that all the symptoms are fiction. In the film, the heroine's husband says: "If you give doctors too little information, they will not be able to help you, but if you tell too much, you will be mistaken for a person with mental disorders."
His reasons are unknown
No one knows what causes chronic fatigue syndrome. One of the hypotheses is associated with viruses, including HIV and the Epstein-Barr virus, but not all carriers develop the disease. Now it is believed that infections can serve as a trigger, that is, to provoke the development of the syndrome, but are not its cause. The same applies to stress - perhaps it is a trigger, although a lot of people experience frequent stress, and only a few get sick. There are some changes in the parameters of the immune system, and when compared with autoimmune diseases, similarities and differences can be found.
Finally, chronic fatigue syndrome may well have a hereditary component, and the film even shows a mother and daughter with this disease. However, the term "hereditary" does not mean that the disease is transmitted from parents; mutation of a gene associated with its development can occur in any person. The specific genes responsible for this are not found yet.
He has serious complications.
Now the second name of this syndrome is myalgic encephalomyelitis - literally, this means an inflammatory process in the brain, which manifests itself, including muscle pain. In the English-language literature, the disease is referred to as ME / CFS, that is, both terms are used. Because of months or years, without physical activity, other problems develop: muscles atrophy, bones lose minerals and become fragile. When you try to stand up due to a sharp decrease in pressure, a person may faint. There are also memory impairments; Jennifer Brea says that there are moments when it is difficult not only to move, but also to speak or even think.
Psychological problems also do not keep themselves waiting. When it is physically impossible to go somewhere and meet friends, it becomes difficult to maintain relationships, and the social circle is narrowed. A person with chronic fatigue syndrome often has the feeling that he cannot be a full-fledged partner. All this, together with constant poor health and lack of implementation, for example in work, increases the risk of depression and suicidal thoughts.
A person with CFS "disappears" from society
It is terrible to think what it was like for people with chronic fatigue syndrome in the era before the Internet; Now many of them online communication helps to cope with loneliness. When you can't get out of bed, the computer becomes the best friend. The heroes of the film repeat more than once that you "cease to exist" with this disease: firstly, you cannot do anything, secondly, you lose contact with the outside world.
The most annoying thing is that the name of the syndrome sounds quite innocent, and the "fatigue" in it does not seem to others to be scary. Feelings of a person with this disease are easily devalued by the words “I get tired all the time and do not get enough sleep,” “try to move more” or “vacation at sea will solve this problem.” Sometimes it seems to us that since a person does not have any "normal" disease that justifies poor health, he is simply lazy - although it is hard to imagine laziness that cannot be overcome even if you have to lose your job or friends.
Few people know about the syndrome
This disease is not so rare: according to various sources, its prevalence is about 1%, that is, one out of a hundred people may have chronic fatigue syndrome. Unfortunately, in a huge number of cases, the disease remains unrecognized; at best, people are still being examined, at worst, they are labeled as “abnormal” and believe that the complaints are unfounded. Few of the doctors constantly monitor the updating of scientific data, and for little-studied diseases they often change - and the doctor may simply not be aware of what the disease is and how to work with it.
Although chronic fatigue syndrome can lead to real disability, it is extremely difficult to prove that a person deserves disability status - which means you can not count on social benefits, certain benefits or help with treatment. Our heroine with fibromyalgia told about a similar situation: it is impossible to get a disability because there are no ways to prove it. According to activists who are trying to draw attention to the disease, public institutions ignore it by what they call chronic fatigue syndrome rather than myalgic encephalomyelitis: the term “fatigue” is not taken seriously and does not want to invest money in it.
Most of the patients are women
This syndrome is two to three times more common in women. Perhaps this is one of the reasons that he was not paid attention to for a long time and he was so poorly studied - after all, it was not accepted to treat women who complain of fatigue and weakness seriously. And if now, with the development of medical technology, it was possible to “see” the physical basis of many diseases, before any strange ailments were declared “hysteria” or “uterine rabies”.
Jennifer Brea notes that among patients with complex autoimmune diseases such as fibromyalgia, lupus or multiple sclerosis, almost 80% of women. Many of them are not diagnosed immediately, initially blaming hypochondria or laziness.
How to treat it is unknown
To date, there are no registered drugs specifically designed to treat this syndrome. If the inflammatory process in the brain is pronounced, immunotherapy agents are used - these are not over-the-counter "immunity-enhancing" weeds, but serious drugs that are used to treat, for example, leukemia and lymphomas. The treatment takes into account that chronic fatigue syndrome is accompanied by pain, problems with bones and muscles, and often depression - and they prescribe at least minimal exercise, antidepressants and psychotherapy.
The main problem, again, is that the causes of the syndrome are unknown, and its mechanisms are complex and poorly understood. Treatment is highly dependent on the manifestations and often remains only an attempt to influence the symptoms. But there are also studies of new drugs with complex immune mechanisms of action, which may become the key to the treatment of this syndrome.
Photo:Shella films
