Chen Wei remembers that he was sick when he first fell ill ten years ago.
In 2013, 20-year-old Chen Wei thought that he was too tired recently and "just take a rest", so he asked for leave at home, rested for a while, and slept at seven or eight o'clock every night, sleeping for more than ten hours each time.
Soon he felt sick, and very sick. Because it didn't take long for him to feel a significant decline in his memory, "I even felt like I was dying?" ”
Later, within ten years, large and small illnesses proved that Chen Wei was indeed sick.
In the first two years of his illness, Chen Wei sought medical treatment several times, but he was strangely ill because he could not be diagnosed.
"I went to a lot of local hospitals in Hubei, and I also went to other places", there is no conclusive conclusion, but it was not until five years after his illness, when he happened to see related symptoms on the Internet, that Chen Wei realized that he might be suffering from chronic fatigue syndrome. Unfortunately, among the doctors he has been in contact with, there is no doctor who can accurately give a judgment.
Stills from "Ordinary Glory".
In fact, there is no diagnostic standard for chronic fatigue syndrome in Western medicine, and there is no specific drug for this disease. Even in traditional Chinese medicine, the criteria used to confirm the diagnosis can be easily confused with other pathologies.
Chen Xinghua, chief physician, professor and doctoral supervisor of the First Affiliated Hospital of Guangzhou University of Chinese Medicine, introduced to Nanfeng Window that this is a disease that has not been studied for a long time in the world, and the affected people were first found in Europe and the United States.
Professor Xinghua Chen has been deeply involved in the field of chronic fatigue syndrome for nearly 20 years. According to Professor Chen, in the academic field, early researchers tried to explain the new symptom based on the characteristics of the symptom and used the previous treatment experience, and also classified this symptom in the field of sub-health, but found that all the symptoms could not be fully explained from the theory of sub-health.
Until 1988, the CDC (Centers for Disease Control and Prevention) defined this set of symptoms as chronic fatigue syndrome.
Chen Xinghua also mentioned that although chronic fatigue syndrome was first found in Europe and the United States, there are actually many cases in Asia, but there are fewer people who pay attention to it, and "most (patients) do not necessarily go to the hospital until a certain extent."
Chen Xinghua admitted to Nanfeng Window that in recent years, with the change of life rhythm and pressure, the incidence of chronic fatigue syndrome has also been rising. As an expert in this field, Chen Xinghua is also committed to popularizing science, so that more people can realize that fatigue can also be a disease.
Basically went to all departments
Chen Wei remembers the first moment when he felt something strange in his body, when he was working the night shift.
Chen Wei is engaged in manual labor. On the night shift from 3 a.m. to 8 a.m., he had to shovel chemical fertilizers all the time. At five o'clock in the morning, he suddenly found that he could not exert his strength and could not breathe.
So, he stopped what he was doing, went back to his office and sat down, sat from five o'clock to eight o'clock, and took a leave of absence the next day.
At that time, Chen Wei thought that he was too tired from work and planned to rest at home for a few days. However, in the next few days, not only did the fatigue not relieve, but also the uncomfortable symptoms such as low-grade fever and sore eyes followed.
After half a month, Chen Wei found that he began to have a fever, rash, severe fatigue, a sallow complexion, and the wound healing rate slowed down.
He went to the neurology department of the hospital. The doctor said that all aspects of his data were fine, but Chen Wei insisted that his symptoms were serious.
Stills from "Ask the Heart".
"As a result, the doctor told me to go to a psychiatric hospital." Chen Wei said that he had a habit of exercising before his illness, "so he looks stronger and in good health." At that time, Chen Wei, judging from his appearance, would not have associated him with the patient.
Not only did the doctors not think he was sick, but Chen Wei's family and friends didn't notice anything unusual.
Chen Wei ran to the hospital again and again, and his family was puzzled at one point. thinks that this is Chen Wei's indiscriminate spending of money, "I like to send money to the hospital". In the eyes of the family, there is no problem with all the examinations, "Obviously there is no problem, but it is just a psychological problem (Chen Wei's)." ”
Symptoms are most severe during the first three months of illness. Chen Wei told Nanfeng Window that before his illness, he would do fitness, push-ups, and sit-ups every day, "I did more than 100 every day, in the morning and in the afternoon." But since he got sick, "suddenly he lost his strength, and then he couldn't breathe." ”
"Obviously, a 20-year-old person is very energetic every day, and suddenly he can't use any strength."
The first hospital did not get results, Chen Wei changed hospitals, and hung up the neurology department again. But the doctor told him that he had never seen the disease and did not come to a conclusion.
In the next two years, Chen Wei went around and around and visited many hospitals.
"I can't find a problem with one hospital, but I know I have a problem, so I'm going to run to the next hospital."
Chen Wei remembers that after seven or eight months of illness, his body began to show obvious changes. According to his recollection, his body began to age significantly and show a falling shape, "Ming Ming is only 118 pounds, there is a lot of meat piled up on his waist, his face is sallow, and his eyes will be sallow when it is serious, and then his skin has obvious wrinkles." ”
The aging of the body was accompanied by a heavy feeling of fatigue, and at the same time, Chen Wei began to suffer from severe insomnia. This state lasted for three years, and "I could only sleep two or three hours a day".
Severe insomnia plagues Chen Wei's life. He went to Wuhan for treatment, but the doctor still did not give a clear answer, but asked Chen Wei to take sleeping pills to relieve his symptoms. Without the reason for insomnia, Chen Wei was reluctant to take sleeping pills rashly, "sleeping pills are not a cure for the symptoms at all."
Stills from "Female Psychologist".
In the early days of his illness, Chen Wei also went to the local CDC for treatment many times. Chen Wei was also suspected of AIDS by doctors and was asked to undergo AIDS-related tests many times. However, the results of multiple examinations confirmed that Chen Wei did not suffer from AIDS.
After that, Chen Wei felt that he often had minor ailments, and he himself did not know whether these minor ailments were caused by chronic fatigue syndrome. The only thing they have in common is that none of them can confirm the diagnosis, and the results given are "varied".
Chen Wei once went to the doctor according to the symptoms of his sallow face, and there was still no problem with the data, only when he checked his liver function, he found that the bilirubin was high, so he thought he had liver disease. He also went to the doctor based on the symptoms of swollen lymph nodes, and the doctors did not give a uniform answer. "One moment it is said that it is a skin disease, and the other time it is said that it is a variety of diseases."
Chen Wei remembers that in the first two years of his illness, he was unable to do simple work, so he had to recuperate at home all the time, relying on the help of relatives and elders to survive. After three and a half years of illness, after the treatment of traditional Chinese medicine, his work and life rhythm gradually returned to normal, but his body was never able to return to the state before the illness.
Recalling the experience of seeking medical treatment, Chen Wei was a little helpless. "I always feel like all my money has gone to the hospital, and I either see this disease or that disease", and basically went to all departments.
Tired of not being understood, who understands?
Three days before the interview, Zhang He had just had a serious illness.
At first, it was just an ordinary cold, but it was suddenly so severe that the fever did not go away. This is already commonplace for people who have been chronically tired for three years.
After hanging up the water from the hospital, Zhang He told the reporter that since suffering from chronic fatigue syndrome, "the overall physical function has declined, which is too torturous." ”
Zhang He recalled that the earliest time he felt that his body was "a little bad" was six years ago in early 2018.
At that time, she had been working for six years, and she didn't feel anything unusual about her body, but she always felt unconsciously tired and painful. She always felt that her current environment was too depressing, and it might be better to go somewhere else.
Stills from "Wading through the Sea of Wrath".
In October 2018, Zhang He decided to resign and came to Japan alone, starting a life of part-time work and study.
It seems that it is not easy for a person to have to work and study, and to take care of himself who is already in poor health.
At this time, she found that her fatigue symptoms were getting worse and worse.
Zhang He made a very apt analogy. She compared herself to a "battery car with a low battery and can't be charged", others can move forward by charging a little and turning it, but she "stagnates no matter how it turns." ”
At that time, she even had a hard time concentrating. "I was cutting turnips in a rental house, and I was already too tired to cut half of them."
Zhang He tried to seek help from doctors in Japan.
In December 2019, she came to a local hospital in Japan. She said to the doctor, "I'm tired, very, very tired," and the doctor just said, "It's year-end Christmas, and it's tiring to have a lot of parties, and that's normal." ”
But Zhang He knew that her tiredness was fundamentally different from the tiredness of others who stayed up all night after attending the party.
"I was really desperate at that moment. I felt like I had to go back to my country, and I would really die if I didn't. ”
In April 2020, Zhang He returned to China. At that time, when the epidemic broke out, she landed in Tianjin first and was diagnosed with moderate depression in a hospital in Tianjin.
Taking antidepressants, Zhang He felt that his fatigue symptoms did not seem to be alleviated.
Stills from "Female Psychologist".
The family in her hometown was worried about Zhang He's physical condition and introduced her to a relative who was doing psychological counseling. Zhang He returned to his hometown and was taking antidepressant medication while being treated in the hospital in his hometown. The doctor in her hometown told her, "You are in your early thirties, which is the time when your blood is at its highest." "I prescribed some Chinese medicine to replenish qi and blood for her to take.
Zhang He took these painless medicines, and constantly asked for help from all sides.
Some doctors said to her, "Some of the hypothyroidism and cancer patients I have seen have such (fatigue) symptoms, and you are fine." Zhang He also told relatives and friends: "I am super tired without doing anything, and I am very uncomfortable." ”
But relatives and friends always give some repeated responses: "you drink more water", "you sleep more", "you exercise more", "you bask in the sun more".
Zhang He was desperate. Of course, she knew that if they worked, she would not repeatedly ask for help.
"I feel like we're already in a completely different world because I'm trapped in my body."
Zhang He feels like a person drowning in a pool, no matter how he struggles, the people around him also feel that "you are fine".
Stills from "My Name".
Zhang He, who was trapped in his body, tried to save himself.
Zhang He signed up for a psychotherapy team, and each phase of the project took three to four months. At the end of the first phase of the project, a girl from the same team gave her a bracelet. Zhang He is happy because she feels that "she is also being noticed".
On the day the second phase of the project began, she saw the girl again in the team.
The girl took the initiative to ask Zhang He how his physical condition was recently, and Zhang He said frankly, "Recently, my state has been really bad, my body is inexplicably painful, and the pain is unbearable." I just went to the hospital and prescribed medicine, and my body barely improved after taking it. ”
But the girl's response stimulated Zhang He again.
It's not so much the stimulation as the helplessness and helplessness that I don't understand.
The girl said to Zhang He, "Actually, you are not sick, this is because your belief system is wrong, because you believe that you are sick, you believe that your body is not healthy, so you have been in bad health." ”
Originally, he was relieved that his family and the doctor in his hometown did not understand, but he didn't expect the patients to understand either, and tried to attribute it to his own will, which made Zhang He feel a lot of stimulation.
"This made me feel like I had to heal myself." Zhang He made a very big determination.
Traditional Chinese Medicine and Western Medicine
After three and a half years of illness, Chen Wei came into contact with traditional Chinese medicine by chance. In the following year, Chen Wei searched the Internet for treatment. The hope of resurgence has supported Chen Wei all the way to seek medical treatment, even if not always with good results.
Chen Wei remembers that the second Chinese medicine practitioner he encountered, "after drinking the medicine for half a year, I felt that my eyes were getting more and more sore, and my legs were sore and cold." Later, the doctor tactfully told Chen Wei to let him go to the big city to have a look.
He confessed to Nanfeng Window that after receiving the treatment of the eighth Chinese medicine doctor, the once very serious insomnia was finally cured. At this time, he has made many attempts, found a "provincial famous doctor", and also went to a traditional Chinese medicine hospital.
Zhang He has also traveled to hospitals large and small. At the traditional Chinese medicine hospital in her hometown, the doctor prescribed tonic medicine to Zhang He in the name of "fire", but after she took it, she began to have diarrhea for no reason, which did not relieve her fatigue symptoms.
Stills from "Female Psychologist".
The doctor explained, "You have such a big fire in your body, how can you do it without leaking it?" ”
Zhang He's choice was that no matter what name the doctor prescribed, as long as the body had a bad reaction and it was not beneficial to the relief of fatigue symptoms, she would stop immediately.
Later, Zhang He met doctors who specialize in chronic fatigue syndrome at Dongzhimen Hospital and Guang'anmen Hospital in Beijing.
For the next two and a half years, Zhang He continued to be treated from hospital to hospital in Beijing. She first received acupuncture treatment in Dongzhimen Hospital, and then cooperated with the traditional Chinese medicine decoction pieces treatment in Guang'anmen Hospital, and the treatment effect was relatively remarkable.
Acupuncture and traditional Chinese medicine are the two most commonly used therapies for the treatment of chronic fatigue syndrome.
In 2004, Chen Xinghua's Ph.D. team developed the "three needles for fatigue" diagnosis and treatment plan based on the pathogenesis of chronic fatigue syndrome and acupuncture treatment.
As the name suggests, fatigue three injections are mainly aimed at the treatment of fatigue discomfort caused by physical, psychological and mental symptoms of chronic fatigue. Chen Xinghua said that they selected some acupuncture points for different fatigues to achieve the overall treatment effect.
It is worth mentioning that from the perspective of clinical experience, although Chen Xinghua's platform is still mainly based on acupuncture treatment, from the perspective of traditional Chinese medicine, for some patients, it is still necessary to cooperate with traditional Chinese medicine treatment, "so our treatment plan includes both acupuncture and traditional Chinese medicine (treatment) methods." Chen Xinghua introduced.
According to the different physiques and needs of patients, Chen Xinghua and his colleagues will also adjust the treatment plan appropriately. "If there is a patient who clearly says that he does not want to drink Chinese medicine, then we will use three injections, and if some patients can accept it, we will consider whether the patient's constitution is biased. If the imbalance of yin and yang is obvious, it may be treated with other drugs or acupuncture points on the basis of fatigue and three injections. ”
In addition, acupuncture is only one of the methods used in acupuncture treatment for chronic fatigue syndrome, which varies from person to person. Chen Xinghua and his colleagues also use treatments such as moxibustion, acupoint injections or acupoint thread embedding to "achieve satisfactory results for patients as much as possible." ”
In fact, within the scope of Western medicine, the current treatment of chronic fatigue syndrome abroad is mainly carried out from two aspects: one is health education, helping the masses to understand the disease, and then intervening in life, as well as carrying out some health guidance interventions; The second is behavioral cognitive therapy, which requires the intervention of a psychologist in foreign countries and a psychiatrist qualification in China.
It is worth mentioning that the existence of behavioral cognitive therapy may lead people to have a misconception about chronic fatigue syndrome, which is a mental illness or mental illness.
Chen Xinghua added that in China, there are many interventions of traditional Chinese medicine, but because there are no effective treatments abroad, foreign treatments can also lead people to mistakenly think that this is a very serious disease, "in fact, it may not be the case".
Chaos on both sides
Chen Xinghua mentioned that the research on chronic fatigue syndrome in China did not start in recent years, and the earliest topic can be traced back to around 2004.
Chen Xinghua introduced to Nanfeng Window that from the perspective of traditional Chinese medicine, the symptoms of chronic fatigue syndrome are mainly from physical fatigue and psychological fatigue. Among them, physical fatigue will be accompanied by some soreness, muscle and joint pain, etc., and psychological fatigue will be accompanied by sleep disorders, anxiety, depression, etc.
Because the symptoms caused by chronic fatigue syndrome are quite similar to those of other diseases, it has not been easy to diagnose chronic fatigue syndrome so far.
Stills from "Restart Life".
Chen Xinghua introduced that in hospitals, the obvious differentiation of different specialties is one of the reasons for the difficulty of diagnosis. "If a patient with chronic fatigue syndrome goes to a rheumatologist to see a doctor, then the doctor must immediately consider rheumatism or immune diseases, and may not consider the patient to have chronic fatigue syndrome."
Chen Xinghua admitted frankly to Nanfeng Window that the current treatment for chronic fatigue syndrome is actually in a "two-part chaos" situation.
From the patient's point of view, some patients do not necessarily know that they have chronic fatigue syndrome, but simply go to the hospital for treatment, but in the process of consultation, everyone's complaint is different. "Some patients may complain of fatigue, while others go to the clinic with symptoms such as headache, sore throat, and low-grade fever, and they go to different departments at the time of consultation, such as rheumatology or even fever clinics."
It is necessary to further understand the symptoms caused by chronic fatigue syndrome and choose the department that is suitable for you to diagnose it, so as to improve the probability of cure.
Chen Xinghua said that in general, the symptoms caused by chronic fatigue syndrome last for at least 6 months before they are eligible for diagnosis. If similar symptoms occur within six months, then the doctor will consider the fatigue symptoms caused by the underlying medical conditions of other patients.
Stills from "I, Get Off Work at the Point".
From a doctor's point of view, not all doctors in the hospital are fully aware of chronic fatigue syndrome. Chen Xinghua said frankly that even if the patient's symptoms have appeared for more than half a year, experienced doctors still need to constantly ask and rule out that the symptoms are caused by the patient's own underlying diseases in the process of diagnosis, and finally the diagnosis can be made. For inexperienced doctors, it can be more difficult to diagnose and even lead to misdiagnosis.
In the face of the patient's complaint of fatigue, some doctors will think that fatigue is only caused by the common cold, staying up late, or irregular work and rest, and take some corresponding interventions, rather than rising to the level of effective diagnosis and treatment of chronic fatigue syndrome.
For doctors, there are still questions to consider.
The intervention of medical insurance itself for chronic fatigue syndrome is not sufficient, which is reflected in the fact that the fatigue diagnosis of traditional Chinese medicine has not yet been included in the scope of medical insurance. Chen Xinghua explained that this situation will force many doctors not to diagnose fatigue in patients, "It can only be the next diagnosis, such as cervical spondylosis or other aspects." ”
In particular, chronic fatigue syndrome affects the work and life of patients in severe cases, and most patients can only enjoy medical insurance through other diagnoses.
"The general effect [of chronic fatigue syndrome] is fatigue, such as not wanting to go to work or doing anything else." If the patient has been in a state of fatigue and tension for half a year, the patient will naturally have some sleep problems or depression and anxiety problems, and then some mental symptoms may appear, which will gradually develop into serious conditions.
Therefore, even if a special outpatient clinic is opened, if the patient finds that the medical insurance cannot be reimbursed after entering the specialized outpatient clinic, "he may not continue to be treated, and he may turn around and leave." Chen Xinghua explained.
The focus is still on popular science. Let more people, and even policymakers, realize that fatigue can also be a disease.
"In many third- and fourth-tier cities, even some doctors in tertiary hospitals may not have heard of this name, and if you ask him to go for treatment, he really doesn't know where to start, so how to standardize the treatment?" Chen Xinghua added.
The dissemination of information requires a process, especially in third- and fourth-tier cities, which can not only allow doctors to have a more comprehensive understanding of chronic fatigue syndrome, but also improve the accuracy of patients' visits.
(In order to protect the privacy of the interviewees, Chen Wei and Zhang He are pseudonyms)
This article was first published in the 11th issue of Nanfeng Window magazine
Author | Song Yuling, Miao Hao
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Editor-in-Chief on Duty | Huang Mingting
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