Chronic fatigue syndrome

By | July 12, 2021

THE FESTIVAL OF AMERICAN ARTHHOUSES 2A17 , starting today in Moscow, will show the documentary ” Unrest” , directed by the scriptwriter and the main character of which Jennifer Brea is a person with chronic fatigue syndrome. We watched the film and tell us what kind of disease it is, who has it more often and why the very name of the syndrome makes the life of people with it even more unbearable.

Blockage at work has nothing to do with it

The main manifestation of the syndrome is constant severe weakness, when it is difficult for a person to move or do any habitual actions that did not cause difficulties before. “Persistent” means that fatigue has been felt for at least six months in a row – although, unfortunately, it usually takes longer before a diagnosis is made. The severity of the syndrome can be different: someone continues to go to work, although this is given with great difficulty. About a quarter of patients are confined, if not to bed, then to the house, from which they stop leaving.

A very common symptom is pain (in 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 migraines occur when any stimulus such as light or sound provokes pain. As a result, your whole life can turn into an almost round-the-clock stay in a dark room – you must admit, this is not at all the case when you are tired of working and dream of changing the environment for a couple of weeks.

He has serious complications

Now the second name of this syndrome has become myalgic encephalomyelitis – literally translated, this means an inflammatory process in the brain, which is manifested, among other things, by muscle pain. In the English language literature, the disease is referred to as ME / CFS, that is, both terms are used. Months or years without physical activity develop other problems: muscles atrophy, bones lose minerals and become fragile. A sudden drop in blood pressure may cause a person to faint when trying to stand up. Memory disorders also appear; Jennifer Brea says that there are times when it is difficult not only to move, but also to speak or even think.

Psychological problems do not keep you waiting either. When it is physically impossible to go somewhere and meet friends, it becomes difficult to maintain a relationship, and the circle of friends is narrowed. A person with chronic fatigue syndrome often feels that they cannot be a full-fledged partner. All this, together with constant poor health and lack of fulfillment, for example at work, increases the risk of depression and suicidal thoughts.

A person with CFS “disappears” from society

It’s scary to think about what it was like for people with chronic fatigue syndrome in the pre-internet era; now online communication helps many of them to cope with loneliness. When you can’t get out of bed, the computer becomes your best friend. The heroes of the film repeat more than once that with this disease you “cease to exist”: firstly, you cannot do anything, and secondly, you lose contact with the outside world.

The most offensive thing is that the name of the syndrome sounds quite innocent, and “fatigue” in it does not seem to others to be something terrible. It is easy to devalue the feelings of a person with this disease by the words “I, too, get tired all the time and do not get enough sleep”, “try to move a little more” or “a vacation at sea will solve this problem”. Sometimes it seems to us that since a person does not have any “normal” illness that justifies feeling unwell, then he is simply lazy – although it is difficult 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 in a hundred people can have chronic fatigue syndrome. Unfortunately, in a huge number of cases, the disease remains unrecognized; in the best case, the person continues to be examined, in the worst – they put the stigma of “abnormality” and believe that the complaints are unfounded. Few doctors constantly monitor the updating of scientific data, and they often change for little-studied diseases – and the doctor may simply not be aware of what kind of disease it is and how to work with it.

While chronic fatigue syndrome can lead to real disability, it is extremely difficult to prove that a person deserves a disability status – which means that 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 is no way to prove it. According to activists trying to draw attention to the disease, public institutions ignore it already with what they call chronic fatigue syndrome, and not myalgic encephalomyelitis: no one takes the term “fatigue” seriously and does not want to invest 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 it was not paid attention to for a long time and it is so poorly studied – after all, it is not accepted to treat women who complain of fatigue and weakness seriously. And if now, with the development of medical technologies, it was possible to “see” the physical basis of many diseases, then earlier any strange ailments were even declared “hysteria” or “uterine fury”.

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 immediately diagnosed, at first they are accused of hypochondria or laziness.

How to treat it is unknown

To date, there are no registered drugs specifically for the treatment of this syndrome. If the inflammatory process in the brain is pronounced, immunotherapy is used – these are not over-the-counter “immunity-enhancing” herbs, but serious drugs that are used to treat, for example, leukemia and lymphomas. When treating, take into account that chronic fatigue syndrome is accompanied by pain, problems with bones and muscles, and often depression – and prescribe at least minimal exercise, antidepressants and psychotherapy.

The main problem is again that the causes of the syndrome are unknown, and its mechanisms are complex and poorly understood. Treatment is very dependent on the manifestations and often remains only an attempt to influence the symptoms. But research is also underway on new drugs with complex immune mechanisms of action that may hold the key to treating this syndrome.

What do we know about proteins that kill

Why people started talking about them

They began to study prions, because they are the cause of rare, but very dangerous diseases of humans and animals. These include the so-called mad cow disease, pruritus of sheep and, for example, lethal familial insomnia , in which a person practically stops sleeping and dies within 12-18 months against the background of progressive dementia. Another example of prion disease – disease of Creutzfeldt – Jakob disease , leading to death within six months or a year after the onset of symptoms; the disease affects the brain, therefore memory and attention disorders develop, and then coordination disorders and seizures. The latter is included in the list of the most dangerous diseases in the world, because doctors simply do not know what to do with it. It all started with the mysterious kuru disease in Papua New Guinea, for which there seemed to be no rational explanation.

How they were discovered

The story of the discovery of prions draws on an adventure film with elements of fantasy: it would seem, what could be healthier than life on a beautiful island in the middle of the ocean, for example, in New Guinea? But once upon a time a disease of an unknown nature fell upon the Fore people who lived there, which manifested itself as a very strong shaking that prevented a person from first walking, then standing and sitting. In the end, all the patient was capable of was to lie down and tremble. Paralysis followed, followed by death. For its unusual clinical manifestations, the locals called the disease kuru (in translation “trembling”). Pediatrician and virologist Carlton Gaydushek went to New Guinea to study infectious diseases, including the mysterious kuru. Everything worked out for him: in 1976, Gaidushek received the Nobel Prize “for discoveries concerning new mechanisms of the origin and spread of infectious diseases,” sharing it with Baruch Blamberg, who discovered the hepatitis B virus.

However, Gaidushek did not discover the prions themselves – he only suggested that the virus causes a “pathogenic particle” that is not visible under a microscope. For this, the scientist had to spend a long time on the island, dissect a couple of hundred deceased representatives of the Fore and even send their organs (especially Gaidushek was interested in the brain, which acquired a spongy structure in patients) to his colleagues from different countries. The cause of the epidemic among the Fore people was ritual cannibalism: it was practiced even after the official ban of the authorities. The motives are prosaic: Foret believed that along with eating the flesh of a deceased person, his mind, abilities or talents would pass to them.

Leave a Reply

Your email address will not be published. Required fields are marked *