In Finland, people who feel unwell in some rooms are afraid they will be labeled mentally ill, while scientists are looking for evidence that this is a “real” illness.
In early September 2011, when the Finnish summer had already begun to give way to the first cold weather, a woman was packing her things in the suburbs of Helsinki. Linda took all the food out of the refrigerator, put a set of clothes, a toothbrush, toothpaste, an iron in her luggage and left the house where she had lived for the past 34 years forever.
“I closed the door, got in the car and drove away,” she says. - And I have lived in this house since February 1977. There are so many memories left behind this door. The hardest part for Linda was parting with her personal library. “It's ridiculous to miss books as if they were your own,” the woman recalls.
We meet with Linda in October 2017: she is a personable woman with glasses and gray hair. We are sitting in the lobby of a hotel in central Helsinki, a few blocks from the apartment where she now lives. After moving, she bought a bed, a TV and a broken sofa from the previous tenant. I didn't buy chairs: I didn't think it would be for a long time. More than six years have passed since then.
It all started in 2008: Linda developed a fever and problems with her voice. The construction company found high levels of mold in her basement. According to her, despite all the attempts to get rid of the mold, it seemed to seep into all things. Linda was constantly feeling bad and had no choice but to move.
However, even after that, the symptoms persisted, and the woman's health continued to deteriorate. She recalls that in other buildings, she reacted very painfully to small amounts of mold, chemicals or odors. She went to the doctor, she was told that the sensitivity to several chemicals could not have appeared from the initial contact with mold, because she had moved long ago. Linda dropped her hands. “I'm so tired. I already wanted the next fever to finish me off. I no longer tried to ask for help, life seemed to be over."
As it turns out, Linda has Sick Building Syndrome, a controversial medical condition that has many definitions and symptoms, and even more putative causes. In general, sick building syndrome is defined as an illness caused by the characteristics of the building in which a person lives or works. Dust, germs, carpets, poor ventilation and, in Linda's case, mold are among the causes of discomfort. Other researchers have argued that it is mental and that Sick Building Syndrome is caused by anxiety, dissatisfaction with work or living conditions, or other mental conditions. The term Sick Building Syndrome was common in the 1980s and 1990s. In the United States, where I live, it has already fallen into disuse, but is still being studied and discussed in the Nordic countries such as Denmark and Finland.
I came to Helsinki to meet with members of the online community of patients with this syndrome, and Linda is also there. Another member of the group, Jesse, a slender 17-year-old with dyed blond hair, told me that he and his mom had to leave their house too. “Whether in winter or summer, only the temperature drops sharply - I get sick,” he recalls. “The flu started, my head and legs hurt, there was a rash on my skin, and stuff like that.”
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After they found mold growing in the walls of the house, they had to move, leaving all their clothes and furniture. “We dropped everything,” confirms Jesse. Only family photographs were saved: they were wrapped in plastic, and later they will be copied. Jesse says that he sometimes has health problems at school, sometimes tasks have to be completed in the hallway, away from other students. Visits to the doctor were inconclusive. “This is because it’s not the flu, the bacteria or viruses, we were healthy,” he says. The doctors found nothing.
In 2013, Linda found a doctor who promised to help. After the prescribed "nutritional therapy", she finally felt that she was able to return to a fulfilling life. She is sure that the disease will never disappear forever, but after a couple of months after starting treatment, she managed to go with her daughter on a ski trip.
However, not everyone is so lucky. According to 40-year-old Maria, Finnish doctors are too quick to attribute the sick building syndrome to mental problems. In 2012, she worked in the guardianship service and once felt unwell in the office: abdominal pains, frequent infections began, blood pressure rose - this had not happened to her before. In 2014, mold was found in the building, but by that time Maria had already left work, although she loved her very much. Until 2015, she had a similar reaction in other buildings. In Finland, however, a diagnosis of Sick Building Syndrome does not guarantee that you will receive adequate care.
“When I got sick, I had nowhere to turn,” says Maria. - I was not able to get sick pay, nor the opportunity to return to work or undergo retraining, nor unemployment benefits. I was deprived of all rights and left with nothing."
Alan Hedge, professor in the Department of Design and Environmental Analysis at Cornell University, argues that Sick Building Syndrome first emerged in the 1970s, when ventilation specifications were simplified to reduce energy consumption under the oil embargo. Soon thereafter, health complaints related to being in some buildings increased. No research has come up with definitive results or found a factor that makes people sick. For a long time, the presence of fuzzy fabrics in houses was blamed for this, then allergens, and for some time it was believed that the source of harm was carpets. “The US EPA spent a fortune trying to figure out the cause, but they failed,” says Professor Hedge. "Almost mass hysteria has begun."
Several studies have noted the socio-psychological aspect of the syndrome. How else to explain the fact that women have a greater inclination towards him than men? Or that the layout and location of the office, noise levels in the office, or the availability of personal space can affect the well-being and health of employees? In his work, Alan Hedge analyzed the profiles of thousands of people working in a variety of buildings. “We didn't find any actual signs of the syndrome. In other words, there is nothing in common between the symptoms. It’s impossible to say for sure whether it’s the buildings or the people,”he admits.
According to Hedge, this is the most difficult question in his entire history of solving health problems caused by the peculiarities of buildings. In one of the cases he examined, people only experienced discomfort between 09:30 and 10:00 am. Air samples were taken already in the afternoon, and nothing unusual was found in them. As a result, Hedge nevertheless discovered a reason explaining the strange timing of the ailment: carbon monoxide from cars arriving in the morning rose through the elevator shafts into the office.
In another case, a man had a water mattress with a tiny hole in it. Water dripped on the floor, seeped under the carpet, mold appeared, and the man got sick. “There is no doubt that there can be many reasons for an unwell in a building,” Hedge muses. "The problem is that they have nothing in common."
In another case, 2,000 employees in the Montreal office nearly had to be evacuated due to a bad smell. People were afraid that the building was "sick" and now everyone will develop the syndrome. Hedge only found a couple of musty oranges, which had been left on the table by a hired employee. The smell was the same, but could not harm health. “And yet people got scared. We felt some kind of smell - it’s not clear where it comes from. At the same time, they heard somewhere that the smell in the room can get sick, and immediately began to find symptoms in themselves,”explains Hedge.
After the spread of Sick Building Syndrome peaked, Hedge learned of a different condition: multiple sensitivity to chemicals. People who suspect they have this disease claim that malaise can occur in any building due to any material or chemical. I ask if the answer to the same question is known: is it the buildings or the people?
“I don’t question the reality of their problem,” he says diplomatically. “One thing is not clear: there really are hazardous substances in the building, or people just think they are there.”
According to Professor Hedge, the main problem is that people who suffer from Sick Building Syndrome or Multiple Sensitivities often fail to receive adequate care in the health care system. They rush between doctors who cannot diagnose physiological problems and psychiatrists who claim their symptoms are contrived. Neither one nor the other can prescribe treatment. People find themselves on the street, discouraged, and lose confidence in doctors and psychotherapists, just as happened in Finland.
“Sooner or later, these patients get lost in groups, and their mood only gets worse,” says Hedge. “Very similar to the Flat Earth Society. People are desperate to understand what is happening to them, but in the absence of a rational explanation, they can only rely on their imagination."
On a frosty morning in a cafe in the center of Helsinki, Anna orders hot chocolate. She tells me that there are thousands of people in Finland who, like her, fell ill after exposure to mold spores. They were declared insane, sent to psychiatrists, lost their jobs, left or even destroyed their homes. Dr. Hedge's story was confirmed: she, too, is part of a group of patients with Sick Building Syndrome and Multiple Sensitivities caused by indoor mold. The group meets in Helsinki every few months.
Anna's medical history began in the summer of 2014: she began to catch colds more often, coughing and flu symptoms appeared for no reason. At first, she explained this by the fact that on weekends she had to sit with her grandchildren. “Oh, those kids,” she says. they always climb to kiss my grandmother,”she stretches her lips, imitating an air kiss. However, her health gradually deteriorated. She felt constant fatigue, coughed all the time, her voice was hoarse.
At the time, Anna was working as a doctor in a hospital. She went to the staff doctors and complained that something strange was happening to her. She did not understand why her immunity was so weakened. Maybe something with the thyroid gland? Maybe HIV?
“I passed all the tests that could explain my condition, but everything was fine. I even began to suspect more exotic diseases. I, a doctor, could not understand what was the matter. When Anna took sick leave, her voice returned, and her health improved. However, upon returning to work, everything became the same: the voice sat down again, the cough returned. It was then that she began to think that the ailment had something to do with the building in which she worked.
Anna had heard of mold disease before. However, she did not take it personally until specialists discovered that a huge mushroom was growing in the laboratory next to her office.
Anna's boss promised that the premises would be renovated, and when she returned to work, she would be given an office on another floor, away from the laboratory. She returned in January 2015 and symptoms reappeared. The doctors argued that there was no logical explanation. “They thought it was all out of fear, that it was a figment of my imagination,” Anna recalls. "It was so offensive."
One of the February days in 2015 was the last one at that job: Anna's colleague noticed that she was breathing strangely. At that moment Anna seemed to wake up: “I tried my best to overcome it. I thought I could endure the disease and defeat it. But when even a colleague noticed how I was breathing heavily, I faced the truth. "You can't do that," I thought, "and it won't take long to drive yourself into a coffin."
In the end, Anna ended up in the same position as many patients with the syndrome. She wanted to work and loved what she did, but how to go to work without even being able to enter the building? She had to start studying mold disease and its consequences, and also began to defend her rights.
I ask her what she thinks of psychotherapy, which is often used in the absence of any proven physiological cause. Even if the illness was not caused by psychological problems, can't psychology help people who have lost everything? Anna categorically declares: “These people do not need psychotherapy. They need a new home: a place where they can breathe freely. These are strong people who have overcome a difficult situation, and idle chatter will not help them. They need real, tangible help."
Anna doesn't seem like a hypochondriac to me at all. She is a balanced, strong woman, she thinks clearly and has an excellent memory. I have no reason not to believe her, and now it seems ridiculous that anyone could deny the existence of sick building syndrome. They found a huge mushroom in her office, what is there to argue about?
I went over in the memory of all the patients with whom I spoke: most of them had official evidence that mold was found in the building where they lived or worked. How can this be considered a psychological problem? I soon realized that no one questioned the initial contact with mold.
Doctors are embarrassed that the symptoms do not go away: Anna's cough and shortness of breath were observed even after the mushroom was removed, the laboratory was repaired, and she moved to a "clean" office. These symptoms were more difficult to explain and, according to Anna, doctors and insurance companies did not consider them real, deserving "real" help and support, not psychotherapy.
Helsinki / Wikipedia, Johannes Jansson.
And the most unpleasant thing, according to Anna, is to be disappointed in her own profession. “It did not fit in my head: I am a doctor and I always wanted to help people,” she says. “I was taught to believe what patients say and do my best for their recovery. Why, when I was in the patient's place, no one wanted to help me?"
Luckily, like the rest of the group, she eventually found a doctor who believed her symptoms were real.
Ville Valtonen, a 73-year-old bald man in an ironed jacket and dark cap, waves at me while standing by the car. We are going to the Central Hospital of the University of Helsinki, where he worked for over forty years. About the beginning of the spread of the syndrome, he tells the same as Dr. Hedge: an energy crisis led to a change in construction methods, after which the first patients appeared. He was first approached in the late 1980s. Middle-aged people, who had no health problems before, suddenly began to get sick often.
Before retirement, Valtonen mainly studied the link between stroke and infections. Now he returned to the once unsolved riddle. Valtonen is one of the few doctors in Finland who willingly diagnoses people with hypersensitivity to moisture and mold.
Valtonen identified five stages of the onset of the disease. According to him, this classification is based on observations of the development of the syndrome in hundreds of people whom he treated. First, there is contact with mycotoxins in a building with high humidity. The second stage is an increase in the incidence of infectious diseases. The third is sick building syndrome, and the fourth is multiple sensitivity to chemicals. And finally, a heightened sense of smell: a person becomes extremely sensitive to the smell of mold, “hundreds of times more than usual,” says Valtonen.
In Valtonen's model, sick building syndrome is only one of the stages of the disease. At this stage, he believes, there is hope for a complete cure if the patient avoids any sources of mold or chemicals that are causing symptoms. “However, once the disease has reached the stage of multiple sensitivity, it is almost impossible to completely cure it,” he says. "And if you also have electromagnetic hypersensitivity, there is no hope."
I have doubts about the latter symptom, although Valtonen claims to observe it in many of his patients. Numerous studies have shown that research participants are unable to determine when they are exposed to an electromagnetic field and when not. He says that many of his patients are no longer able to use their mobile phones. Some people have developed chronic fatigue syndrome, which makes them unable to walk even 10 meters. Someone had epileptic seizures. However, both of them on examination demonstrate normal electrical activity in the brain.
Let me say that there is nothing in common between the symptoms. So what's the deal? To this Valtonen replies that he cannot dive into the study of the problem as deeply as he would like. “I am 73 years old and too old to receive grants and do research. Therefore, I only communicate with patients,”he says. His theory is that the disease is an allergic reaction complicated by secondary infections.
View of Helsinki from the hotel window / flickr.com, Mikael Korhonen.
When asked whether the psyche plays any role, he, to my surprise, answers calmly, unlike Anna, who instinctively began to defend herself. “I am quite sure that psychotherapeutic support will help these people to some extent, but doctors are doing just the opposite,” he says. - If you go to the doctor and say that you have a mold disease, in response, you will most likely hear: “Are you out of your mind?” And if you say that you have electromagnetic hypersensitivity, then you will definitely be sent to a psychiatrist. they terribly do not want to go to the doctor, because they know that they will not receive proper treatment if they tell the truth."
Many of his patients with Sick Building Syndrome consider meeting Valtonen a fortune. It was a turning point in their medical history: he made a diagnosis, and for once they felt better. In the course of the conversation, I understand that in reality he does not offer any method of treatment, he simply advises to avoid irritants. I think the most valuable thing it gives patients is recognition of the biological nature of their symptoms.
“What kind of doctor am I if I don’t trust patients?” Valtonen exclaims as we leave the hospital. “In all my 45 years of practice, I rarely came across people who deceived me.”
But, as I will soon find out, trusting patients is not enough: everything is much more complicated. Merja Lindström and Kirsi Vaali enthusiastically tell me what I would very much like to believe: they managed to cure a patient named Mikko from mold disease.
Lindström is a homeopath and Vaali is a biomedical researcher from the University of Helsinki. Before tackling mold, Vaali studied food allergies and chronic fatigue syndrome. As you can see, in the sphere of her interests are diseases that others consider purely psychological, and therefore unworthy of attention. She eagerly tells me that mold disease is actually related to mitochondrial damage, and she even has guesses which gene is responsible for the susceptibility to mold.
Then doubts begin to creep into my head. Believing the patients' stories (as Valtonen does) was much easier. Still, they talked about how their lives changed with the onset of the disease, and not about the mechanism of its occurrence and medical aspects.
The "scientific" explanation for this disease shook my faith. In just two days they managed to tell me that mold disease is a violation of the innate immunity, an inflammatory process, and an autoimmune disease, they told me about its connection with the blood-brain barrier and oxidative stress, and now also with damage to mitochondria. They haven't shown me any supporting data yet, and I have a lot of questions. Did Baali take blood samples from patients? Can mitochondrial damage be seen and measured in people with the syndrome? Most importantly, how exactly are the immune system and mitochondria related?
Sunset in Helsinki / ickr.com, Giuseppe Milo.
Vaali and Mikko start laughing and I already think I asked something stupid. In fact, the question is the most fundamental, but they have no answer. Vaali shrugs: "This question cannot be answered at all."
As the conversation progresses, the list of suggested mechanisms and symptoms only grows. As it turned out, patients with mold disease are characterized by disturbed sleep patterns. And explaining why women are more susceptible to this disease, Vaali also mentions female hormones, and the penetration of toxins into fat stores, and a lack of liver enzymes.
Vaali and Lindström do not seek to cover the scientific side of the issue, they want to talk about how patients can be helped. According to them, people can be "saved" with the help of homeopathic medicines and dietary supplements - and Mikko confirms this.
I ask what kind of miraculous supplements. Both Baali and Lindström refuse to answer. In two hours, I ask them to tell about it four times, patiently listening to deviations from the topic and excuses, they say, they are not suitable for every person, and it is unlikely that they will be able to buy them abroad. Finally, Baali shows me Mikko's diet: it consists of the most basic vitamins and nutrients. I take these supplements myself. B vitamins, iron, omega-3s, curcumin, and several fatty acid blends. Vaali also advises against eating gluten-rich foods, and Lindström only permits natural foods. It is worth excluding cheeses and other products containing mold: they can provoke illness. You can drink organic wines that do not contain foreign matter.
When Valtonen told me that he was treating patients without doing anything, and that Linda's life was getting better thanks to food therapy, I suppressed my disbelief. Now it is back. There has not yet been any reason to doubt the reality of the disease or its symptoms, but the proposed treatment is suspicious. It is argued that Sick Building Syndrome is purely physiological in nature, but it remains unclear how B vitamins can help cope with dysfunction of the immune system or damage to mitochondria?
Lindström shows me the homeopathic pills that he recommends to patients, and my eyes are bulging. Usually I do not make hasty conclusions, but now this is the only adequate reaction: the concentration of the active substance in homeopathic preparations is so low that they simply cannot have any biological effect.
I have no doubt that proper nutrition and a healthy lifestyle will not be redundant for physical fitness, mental health and in the treatment of chronic diseases. I am confused by their use for the treatment of specific pathologies, especially unexplored ones. The link between saturated fat and cardiovascular disease is well known, but do natural gluten-free foods reduce your sensitivity to chemicals? Does drinking biodynamic wine affect sensitivity to electromagnetic fields? How do homeopathic arsenic tablets help with mycotoxins?
My skepticism does not go unnoticed: Mikko does not believe in all this either. He works as a general practitioner and child psychiatrist and began taking supplements only nine months after they were prescribed to him, and refused homeopathic pills altogether: Mikko affectionately calls Lindström a "healer." However, he really thinks the supplements make him feel better.
In 2003 Mikko bought a house, in 2007 the first symptoms appeared. By the fall, he had moved to live outside in a van. Experiencing all the symptoms at once - itching, headache, nausea, nasopharyngeal irritation and eczema - is like going to hell, he said. He suffered for five years until he turned to Baali and Lindström. I felt better in a month or two. At the same time, the ventilation was cleaned in the house. The man believes that both factors contributed to the recovery.
Mikko has been practicing psychotherapy for many years. He is sure that he knows himself very well, which means that the disease is not psychological. "Different types of psychotherapy can help people cope with the difficulties of life," he says, "but they cannot cure a physiological illness."
Then I'm shown Linda's diet. She is also "treated" with supplements, and I want to compare the two diets. Everything is the same there: fatty acids, high doses of B vitamins and other vitamins, curcumin and further down the list. You need to take everything at a certain time of the day: before breakfast, after breakfast, before lunch, after lunch, and so on at least three to four times a day. Finished taking one supplement, we are taking on the next.
Of course, it's good that Mikko and Linda have found an effective remedy for their ailment. On the other hand, it seems that they have changed the awl for soap. Previously, their lives were ruled by disease, now - diagnosis and treatment.
I go out into the fresh air for a snack. I go and think that since the time I arrived in Finland, my attitude towards mold disease has changed. I didn’t tell anyone this, but, unfortunately, I perfectly understand all these patients. I know the feeling when you know that something is wrong with you, and the doctors convince you otherwise.
All my life I have been reporting symptoms to doctors that could not be explained. I had to take pictures, pass painful tests: to no avail. Three doctors of various specialties tried to prescribe antidepressants for my physiological symptoms. And recently I started dysphagia - it became difficult to swallow. It got to the point that I even choked on food, but there was no reasonable explanation for this. Several years earlier, I had been diagnosed with laryngeal-pharyngeal reflux. This is a type of gastroesophageal reflux that some gastroenterologists are unsure of as there is usually no trace of gastric acid left in the throat.
I have also tried endlessly with natural remedies, hoping to find that magic supplement that will finally help me. I take not only what Vaali and Lindström suggest, but I also make smoothies with herbal powders, add crushed licorice root for digestion, digestive enzymes and L-glutamine for the stomach lining. However, I stay away from homeopathy.
I always back up my actions with scientific research: after all, I write articles about science, and I grew up in a family of scientists. But deep down I understand that my relationship with my own body and any bodily sensations are made up of what the body feels "in reality" and how I was taught to react to it. During childhood, parents used stickers with expiration dates on food, and each family member had a personal hand towel to keep germs from spreading. Visits to the doctor, non-standard medical tests, constant self-examinations - this is all familiar to me since childhood. My house was also in a sense "sick."
The doctor, to whom I turned with dysphagia, could not establish the cause, but warned: the disease can appear simply from the thought that something is wrong with the body. If you do not use the muscles of the larynx (as I did), they weaken, and this can easily lead to a real pathology. “There is no need to create a problem out of nothing,” she concluded.
I got so scared that I started eating solid food again. But at the same time, the thought did not leave me: wasn’t there a problem at the moment when I applied?
I used to see my body as a potential battlefield. But Anna and other patients from Helsinki were not prepared for the danger of mold. Perhaps the exposure to mycotoxins made them look at their bodies in a new way, and they suddenly realized that some invisible thing that lives behind walls and flies through the air can easily deprive them of health. This made such a strong impression on them that walls of a different kind began to collapse: between emotions and body, thoughts and sensations. Most likely, there were no walls: the influence of mold only dispelled the illusion.
Risto Vataia, head of the neuropsychiatric clinic at the University of Helsinki Central Hospital, believes that Sick Building Syndrome in Finland is more of a social problem than a medical one. The syndrome is well-known here, and it is generally accepted that wherever you go - to a school, a hospital, an ordinary house - you run the risk of getting sick everywhere. Panic is spread mainly by the media, so Vataia is especially interested in how I am going to present the collected material. Subsequently, he will even write me a letter: “Good luck with the article. Just don't fool people's heads: you, journalists, can do it …"
At the same time, it is also difficult for him to relate the syndrome to mental or psychosomatic disorders with confidence. He likes the term "functional disorder" more, which is used to describe conditions such as fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome. "Functional is definitely not from the field of psychiatry," he emphasizes. "Although the psyche of patients with functional disorders is also affected. In other words, the symptoms are not the patients' invention, we simply cannot find an acceptable physiological explanation."
Vataia advocates providing psychological assistance to patients, in particular for the appointment of cognitive-behavioral therapy. His beliefs appear to be driven by problems in dealing with patients who tend to reject the psychological component of treatment. “We recognize that our aid is not enough,” he says, “and that the health system is not addressing these issues, and that there is not enough research done. We agree with the patients in many ways, and we need to build on this.”
In his opinion, advice not to go where it becomes bad contributes to the development of the disease. “Some of my colleagues only make life difficult for patients,” he complains.
I saw that the patients found comfort in the unconditional trust of Ville Valtonen. But didn't he thereby aggravate the course of the disease? Did they have mold disease before or after going to him? Valtonen remains convinced that the best treatment is to stay away from certain areas, although he agrees that controlled studies would be useful to confirm this hypothesis.
I turn to Juha Pekkanen, Head of the Health Department at the University of Helsinki and a researcher at the National Institute of Health and Welfare. He says that, according to comparative studies of European countries, dampness and mold are not very common in the states of Northern Europe. Winters in these countries are cold and the air humidity is low. But people spend more time indoors, hence the longer exposure to mycotoxins. And dry winter air can irritate the respiratory tract. However, there is only one really good reason for the widespread prevalence of mold disease here: people are aware of its existence. “We know that symptoms, and ultimately illness, can be caused by anxiety,” he says.“Therefore, when working with patients, we strive to create a confidential atmosphere and calm down a little.”
Pekkanen and several other scientists were tasked with developing a government program to help people with sick building syndrome. When asked what she will be like, the man replies: “It's not very clear yet. It is only clear that they need help: people have to live in tents, their situation is unenviable. Our duty is to lend a helping hand to everyone in need."
It was nice to hear such words from someone close to the government, because some patients feel that no one cares about their recovery. Pekkanen disagrees. In his opinion, the main problem remains unresolved, since now efforts are focused on identifying the mechanism of the disease and its diagnosis. He hopes the new program will be more results-oriented.
“We need to try to bring them back into society,” he says, “and not take them somewhere in the forest, away from electricity and chemicals. It won't help people. Start to get rid of one harmful factor first, then the second, the third, and there will be no end to it”.
However, Pekkanen does not believe that patients are pretending. Why pretend if there is no compensation for this illness? Apparently, at first, the air in the room causes real irritation of the nasopharynx and respiratory problems, and already with the onset of symptoms, some people begin to fear that something more terrible will happen to them.
“Many cases can be explained by the nocebo effect. Have you heard of this? - asks Juha. - Essentially, symptoms come from people expecting them to appear. I don't like the division into physiological and psychological. It seems that they have already proved that the human psyche and body are a single whole, and, therefore, are inseparable from each other."
Doctors have been observing the placebo effect for most of the time medicine has been around. This effect explains why, in the past, certain medications, surgeries and procedures were considered effective, although today we believe they are useless. Recently, the attention of scientists has been drawn to the opposite effect: nocebo.
The nocebo effect has two components: the expectation of something bad and the conditioned reflex. With the first, everything is clear: it seems to the patient that everything will be bad, and as a result, real information is perceived biasedly. This has been proven experimentally: patients experienced side effects from bogus treatments just because they were warned in advance of the side effects.
A conditioned reflex is developed when something - an activity, a room, a drug - becomes associated with a particular sensation or symptom. Studies of positive conditioned reflexes have shown that when patients are given a flavored drink along with a drug that relieves the symptoms of allergic rhinitis, the symptoms subsequently subside with the drink. Similarly, you can suppress the immune response or increase the production of growth hormones. It is also believed that some of the negative side effects of chemotherapy can be explained by the formation of negative conditioned reflexes.
However, the effects of placebo and nocebo are of the same physiological nature as the "real" symptoms. The 2013 review authors write: "Neurobiological studies over the past 15 years have shown that the placebo effect is a real biological phenomenon associated with the psychosocial context of the patient's therapy." Nocebo effects have been linked to changes in a number of neurotransmitters, hormones, and brain regions.
Keith Petrie, a professor of health psychology at the University of Auckland, has studied how nocebo effects can arise from the thought that the environment, medicine, architecture and food technology can harm health. In 2001, the New Zealand Department of Agriculture and Forestry announced an insecticide spray to prevent the spread of the moth Orgyia anartoides. Petrie examined 292 New Zealanders before and after spraying. Higher levels of anxiety correlated with more symptoms that could be attributed to the moth control program.
“A person begins to complain about the appearance of symptoms if he is sure that his body is susceptible to some stimulus,” concludes Petri.
I ask how it could happen that Finnish patients feel better after taking dietary supplements or after seeing a doctor who has not prescribed any medication. Petri replies: “Any treatment is good because it always changes the perception of the disease. A person goes to the doctor with some problem, say, a flu or a cold, and his attention is focused on how bad he is, how his head hurts, what a strong cough. The doctor prescribes treatment, and the patient's focus immediately shifts: now the brain is set to look for signs of recovery.
But it could be the other way around. Research has shown that the effects of placebo and nocebo can be triggered by a relationship with a doctor, regardless of his or her friendliness.
A 2015 review concluded that “patients who have reported serious problems and are convinced by doctors that they have no physiological abnormalities may feel that they have not been understood or that their feelings have been neglected.” Another study looked at the relationship between a doctor and patients who complained of symptoms but did not receive a diagnosis. The subjects were divided into two groups: the doctor said to one that he could not help with anything, to the other he gave a clear diagnosis and assured of a speedy recovery. After two weeks, 64% of diagnosed patients reported improvement. In the second group, there were only 39% of such patients.
All victims of mold disease have one thing in common: the doctors did not believe their complaints and convinced that there was no explanation for their condition. After reading the research results, I wondered if the matter was unknown. Apparently, it can be harmful to your health just to find out that what is happening to your body is a mystery.
Not all scientists gave up trying to solve this mystery and find a biological explanation. Thomas Dantoft of the Danish Center for Clinical Research and Disease Prevention is looking for biomarkers in the bodies of patients with multiple sensitivity to chemicals and other functional disorders - something that should distinguish them from healthy people. He is also the coordinator of the Danish Functional Disorders Study (DanFunD), the first major consensus epidemiological study focusing exclusively on functional disorders.
Participants - 9,656 men and women - are screened for fibromyalgia, whiplash disorders, multiple chemical sensitivities, irritable bowel syndrome, chronic fatigue syndrome, and bodily distress syndrome. Research methods include surveys and personality tests, as well as collecting blood plasma, DNA, urine, intestinal bacteria, and more. The study will run until 2020 and hopefully provide some epidemiological information that has long been needed.
It is necessary because not only the complaints of patients contradict each other. I spent weeks reading various scientific papers on the biological causes of multiple sensitivity to chemicals - a condition that has been researched for decades. Some works blame the immune system for everything, thus confirming one of the hypotheses that I heard in Helsinki. Others contradict them. Valtonen considers a heightened sense of smell to be one of the stages of the disease. Dantoft notes on this that several studies, including his own, refute this opinion.
Dantoft cannot clarify the question of psychological factors either. Patients with functional disorder live in difficult conditions and it would be surprising if they did not feel depressed. Here is a quote from him: “All studies related to multiple sensitivities and other types of disorders, whatever we call them, report an increased risk of anxiety and depression among patients. But it is impossible to say that there is a cause and that a consequence. It is also uncertain whether the patients' symptoms are true. Maybe people at high risk of developing depression also have a higher risk of developing multiple sensitivities? But that doesn't mean that it can be cured by starting to treat depression."
Dantoft believes that psychological assistance should be provided to patients as a temporary measure, pending new data. “It's too bad that patients and doctors are not being honest with each other,” he says. “There is no need to hide the fact that we cannot offer them effective treatment.”
So what's the problem: people or rooms? I'm sorry, but I never got an answer to this question. In addition, I feel guilty. And for the fact that, while collecting material for the article, I began to doubt the words of the patients with whom I spoke in Helsinki. And for the fact that intuition constantly told me that it was not only about mold poisoning. I have not been able to determine for myself whether their state is real or not, it is something wrong with them, or with the buildings in which they live.
Linus Andersson, a cognitive scientist at Umeå University in Sweden, thinks that this is because the question itself was posed incorrectly. Together with chemist Anna-Sarah Clason, they are conducting the most comprehensive study of the effects of mold and toxins on people with multiple sensitivities I have ever seen. Andersson says: “I constantly felt that I had to choose between a psychological and a medical / biological work direction. But I came to the conclusion that there is nothing to choose. Both aspects are equally important."
Over the past 10 years, Klason and Andersson have been exposing people to various chemical compounds, studying the effects of this on blood circulation from brain images, looking for markers of inflammation in the mucous membrane of the upper respiratory tract, and recently began to study gene expression.
On Skype, they show me a cell phone booth-sized camera in which they conduct most of the experiments. In a paper published in 2015, they exposed patients with multiple sensitivities (as well as a control group) to n-butanol. They chose it because it is usually difficult for people to decide whether it smells good or not. During the first ten minutes, vapors of the substance did not enter the chamber, then the concentration of n-butanol reached a predetermined level and did not change any more. In contrast to healthy participants, people with multiple sensitivities felt that the smell was stronger and more unpleasant, and their symptoms worsened over time.
In the group with multiple sensitivity, more often than in the control group, symptoms appeared even before the entry of n-butanol vapor into the chamber. Andersson thinks it could be a nocebo effect caused by some fear. However, this does not mean that the disease is imaginary.
Allergic reactions can occur without any "real" exposure. In a 2007 food allergy experiment, nearly 13% of children experienced a placebo reaction. The symptoms were real: rash, hives, diarrhea and vomiting. According to Claeson and Andersson, this is a consequence of how the body tries to anticipate and defend against danger. It seems that researchers need to be more careful in interpreting the effects of nocebo and placebo.
In a 2017 paper, Klason and Andersson describe the effects of acrolein on people with chemical intolerances (and control groups). The body uses the olfactory and trigeminal nerves to absorb chemicals in the upper respiratory tract. The olfactory nerve is responsible for smelling, and the trigeminal nerve is responsible for irritation and pain. In an experiment, people with multiple sensitivities reported more severe eye and nasopharyngeal irritation, even when the acrolein odor was obscured by another odor. Since more pronounced symptoms appeared even without the participation of the sense of smell, the scientists decided that it was a malfunction of the trigeminal nerve. They intend to continue research in this area.
They have not yet been able to conduct an experiment that would reveal the mechanism of the emergence of multiple sensitivity. Andersson says their goal is to find a substance to which patients with multiple sensitivities will react in a completely different way than people in the control group. It doesn't matter what kind of substance it is. If it can be found, it will help to better explain the unusual reactions of patients.
I ask Andersson if dietary supplements or homeopathic remedies help with multiple sensitivities. He replies: “The criteria are the same as for explaining the disease itself: any claims must be supported by data. When (or rather, if) homeopathic treatments do indeed meet the criteria of scientificness, I will not object. However, I have not seen such studies yet. For anyone who suggests a treatment for multiple sensitivities, I have one question: what evidence supports its effectiveness?"
I asked Vaali and Lindström several times to talk about dietary supplements, and I was confused that they could not confirm their recommendations with research results. But Andersson and Claeson's desire to thoroughly explore everything is encouraging, but their goal is to establish the true cause of the condition. Unlike Vaali and Lindström, their work does not offer an easy solution to help patients today. It does not allow them to move from the world of the sick to the world of the healthy.
At the moment, the merit of Andersson and Klason is that they have proven the meaninglessness of the most common questions related to functional disorders: "what is the reason, in people or the environment?", "Are these people sick or healthy?", "Does the disease exist or are the symptoms invented? " I can't tell if Sick Building Syndrome or Multiple Chemical Sensitivities are "real" diseases, but it is now clear that we have misunderstood what a "real" disease is. It is wrong to separate psychological and physiological manifestations. It is wrong to think that psychological problems are not real. It is wrong to think that psychological effects do not depend in any way on physiology. These misconceptions are more to blame for the spread of mold disease among Finns,than the abnormal spread of mold.
In Helsinki, I was asked to believe the patients' words. And I believe. I believe Anna's symptoms are real. I believe Maria was mistreated by doctors and employers, that Jesse and his mother felt lonely, and the housing company ignored Linda's complaints. I believe that they all need help.
But all this pales before another thought: if the danger has been eliminated, and the symptoms persist, it is imperative to take into account the psychological state of the patient.
It pains me to think about it, but people from Helsinki who have agreed to take the time and share their stories and experiences with me are likely to be unhappy with my article. They hoped to be exposed, to condemn the Finnish government, to uncover a conspiracy to silence mold patients and avoid the cost of replacement materials and social benefits. In fact, hospital workers and specialists at the National Institute of Health and Welfare are seriously concerned about the condition of patients and are implementing programs like the one Pekkanen talked about. They are trying to establish communication between officials and groups of patients who want justice.
According to Klason, until a cure is found, it is important to do everything possible: to continue research, to try to help at least with something. This is also a kind of demonstration of faith in the words of the patients. Not like Valtonen's, but nonetheless.
“It's important to take people's suffering seriously,” she says. "Since we are doing research, then we consider the problem 'real.' This is already something."
The names of some heroes have been changed.
Project translation New
Shayla Love