Why did I get chronic fatigue syndrome?

Abstract

Objectives. To explore causal attributions among women with chronic fatigue syndrome (CFS). Design. Qualitative study where data from individual semi-structured interviews were analysed according to Malterud's systematic text condensation. Setting. Bergen, Norway. Subjects. A purposeful sample of eight women aged 25–55, recruited among members of a self-help organization. Main outcome measures. Accounts of causal attribution for CFS among the informants, focusing on gender. Results. The participants agreed that their way of living could have increased the vulnerability of their resistance resources. Pressure they put upon themselves, workload burdens without subsequent relaxation, emotional conflicts, or preparing for assumed problem-solving were mentioned as gendered dimensions. They presented different explanations regarding potential triggers encountering their fragile immune systems, most often a virus infection. The participants thought women might have a weaker immune system than men, or that CFS was caused by a virus that women are more likely to catch. In their experience, their symptoms were activated when people put pressure on them, such that they might be nervous as to whether they could live up to the demands of their surroundings, and in the case of emotional strain related to family and work. Conclusion. More studies are needed exploring hypotheses concerning the complex interplay between molecular predispositions and more or less gendered lifestyle issues in CFS. Doctors need to challenge their strong beliefs regarding medically unexplained conditions, where facts still remain unresolved. Recognizing this, the doctor may provide realistic support and advice, and contribute to the establishment of common ground for understanding and managing the condition.

• Aetiology
• chronic fatigue syndrome
• female
• personal narratives
• qualitative research

Chronic fatigue syndrome (CFS) is characterized by severe, disabling fatigue, musculoskeletal pain, sleep disturbance, impaired concentration, headaches and other bodily symptoms [1], [2]. A recent prevalence study showed that CFS occurred in 0.42% of the population [3], most often among women, minority groups, and persons with lower levels of education and occupational status.

CFS patients report an overwhelming lack of energy, not comparable to the exhaustion everyone can feel sometimes [4], and less than 10% of CFS patients return to premorbid functioning [5]. The gap between the impairing symptoms and the lack of biological markers in this condition leads to uncertainty in doctors, who express scepticism and demonstrate moralizing and stereotyping attitudes against CFS patients [6]. A report approved by the British Chief Medical Officer concludes that “healthcare professionals should recognise CFS/ME as a chronic illness that, despite uncertain aetiology, can affect people of all ages to varying degrees, and in many cases substantially” [7].

Predisposing factors, triggers, and maintaining factors have been identified. Immune, endocrine, musculoskeletal, and neurological abnormalities are demonstrated, as parts of the primary disease process as well as secondary consequences [1]. Despite considerable research effort in recent decades, no unifying cause of CFS has yet been identified [8].

The reason why most patients are women remains unclear. One theory is that certain predisposing or maintaining vulnerabilities might be more prevalent in women than in men, including reproductive correlates [9], [10] or stress-associated immune modulation [10]. Patients have pointed to the impact of stress and activity [11], [12]. From our own research, we know that patients have knowledge that can contribute to a broader understanding of medically unexplained disorders, including the underlying mechanisms of the conditions [4], [13]. We therefore conducted a study to explore causal attributions among women with chronic fatigue syndrome.

Design, material, and methods

Ethical approval was obtained from the Regional Committee for Medical Research Ethics. Eight women with various backgrounds were recruited to a qualitative study from the local self-help organization. All the women had suffered from the condition for 2 years or more; one of them for the last 11 years. We included informants of various ages (25–55), marital status, with and without children, and thereby obtained a wide sample of women suffering from CFS. The participants were asked to give an account of their relationship to the organization and how their beliefs had been shaped by their membership. Most of the informants neither attended meetings nor knew other members. Their only connection to the organization was through its journal, which they received a couple of times a year.

Data were drawn from semi-structured interviews, lasting about 45 minutes, in the informants’ homes, where participants were invited to share their thoughts concerning the cause(s) of their disease. The interviews were conducted by the first author (AS), who at the time was a medical student trained in qualitative interviewing. The interviews were audiotaped and transcribed by the interviewer.

The analysis was performed in collaboration by both authors, following systematic text condensation [14]. Analysis proceeded through the following stages: (i) reading all the material to obtain an overall impression, bracketing previous preconceptions; (ii) identifying units of meaning, representing different aspects of the women's attributions and coding for these; (iii) condensing and abstracting the meaning within each of the coded groups; and (iv) summarizing the contents of each code group to generalized descriptions and concepts reflecting the most important attributions reported by the informants. Analysis was supported by a feminist perspective, where special attention was drawn to accounts where gender in some way or other might be related to the causal attribution.

Results

The participants agreed that their way of living could have increased the vulnerability of their resistance resources. Pressure they put upon themselves, workload burdens without subsequent relaxation, emotional conflicts, or preparing for assumed problem-solving were mentioned as gendered dimensions. Different explanations were presented for potential triggers encountering their fragile immune systems, most often a virus infection. The participants thought women might have a weaker immune system than men, or that CFS was caused by a virus that women are more likely to catch. In their experience, their symptoms were activated when people put pressure on them, such that they might be nervous as to whether they could live up to the demands of their surroundings, and in the case of emotional strain related to family and work.

Vulnerable resistance resources

Most women shared stories regarding a hard-working period of time before they became ill, comprising for example a busy job, a lot of housework, and too much exercise. An unhealthy and monotonous diet did not better their conditions. Some participants spoke of conflicts at work and home, and said they had felt totally worn out in that period. Some mentioned the theory that they put too much pressure on themselves, so their bodies were overworked and became more predisposed to illness. One woman claimed that she never used to be sick earlier, but then she started getting frequent sinusitis, gynaecological infections, pneumonia, and so on:

My body was totally burnt-out, and then I got a virus. So now I understand that I didn't have a chance. (No. 3)

A couple of others did not believe that their busy days had caused CFS, because they had experienced such periods before in their lives without becoming ill. Besides, it could not be said to be a negative situation; they were busy doing things they enjoyed:

I had just finished my education when becoming ill. I had started working, and liked what I was doing … so I can't imagine that I was worn out. (No. 7)

Most informants had thoughts about why most CFS patients are women. The general understanding was that women put more pressure on themselves than men do. Our informants did not have the conscience to relax, and forced themselves to continue. In addition they often became worn out by solving assumed problems in advance. Many women related these patterns to the outbreak of disease, and thought that they might have avoided the disease if only they had rested enough. One said that her husband showed consideration for himself and rested when he needed to, while she “forgot” to consider whether she was tired or not:

Men have another way of living. They are at work, and when they come home they relax. I never have the time to relax. (No. 6)

None thought that their disease was caused by psychological factors. Yet, they would not deny that they now felt depressed, considering this a natural reaction to being ill for so long. This was a consequence of being ill and not the reason for it, according to the informants. One informant, though, had suffered from depression during the years before she had CFS. She once even tried to take her own life. She thought these episodes could have drained her immune system.

The informants also mentioned other strains they thought had affected their health, such as polluted air or unhealthy diets. One woman said that her condition had improved when moving from away the noise and pollution in the city to the quiet and cleanliness of the countryside. Most of them had changed their diets from junk food to eating more fruit and vegetables. They had discovered that if they did not maintain their diet their condition would deteriorate. Their indoor environment was often unsatisfactory, and might lead to a weakened immune system. Dieting was also mentioned as a strain some women went through, possibly leading to disease.

Another theory mentioned was that infections had impaired the body over a period of time before the onset of illness. One informant used to have a job in which she regularly encountered different infection sources, and this resulted in her often being ill. She thought that this had damaged her immune system in a way that could have allowed CFS to break out. Another woman spoke of the widespread use of antibiotics, and how she felt this had affected her body. She said that this had caused profound changes in her intestinal system, and the result was an impairment of her immune system.

Triggers encountering a fragile immune system

About half of our informants believed that a virus infection had triggered the outbreak of CFS, with Epstein-Barr virus being verified in one of them. Her boyfriend improved from mononucleosis again quite fast, while she never recovered. In addition to the fatigue, she started developing concentration problems, pain in muscles and joints, and headache. Two other informants suffered a heavy dose of flue, and did not recover. Another said that pneumonia with following bronchitis had caused her outbreak:

It seems as if it may be a virus. They do influence the immune system. (No. 5)

Most of the women had no opinion on which virus this might be, but as one of them said:

The AIDS virus wasn't discovered for quite a long time, so only God must know how long it will take before they find this one! (No. 1)

Many participants thought their immune system had changed after getting ill. Infections did not affect the body as much as before, and regular colds were no longer the norm. Those who had experienced this presented the explanation that their immune systems put infections out of action faster owing to “over-activation”.

I haven't had a regular cold since I got CFS. (No. 2)

This was not the case for every informant. One told us that virus infections even made her feel sicker now than before. A regular cold could put her out of action for weeks.

Some informants suggested that women in general have a weaker immune system than men. The cause might also be a virus that women are more likely to catch. Another factor suggested to strengthen this theory was the fact that women are genetically different from men.

In Norway, at the end of the 1980s, an ongoing meningitis vaccine project was carried out. All high-school students were asked to attend, and one of our informants was of the opinion that this vaccine had caused her to get CFS. Food poisoning was also mentioned as a possible theory. Another informant blamed a stomach infection she had 10 years before she got CFS. Amalgam in the teeth was also mentioned as an explanation. The woman concerned thought that she was hypersensitive to quicksilver, and that it had poisoned her body.

Pressure and activity draining energy again and again

Physical activity made the disease worse for all our participants. Their greatest wish was to get well again as soon as possible. Almost in despair, many of them had overestimated themselves, and tried to live a “normal” life again. This inevitably led to another period of staying in bed. One of them told us about a day when she was out walking on the beach. She found many beautiful stones there, and she decided to take some of them back home. The stones were quite heavy, and she became tired after carrying the bag for a while. The result was that she had to stay in bed the next day. Other, more common activities such as housework and workouts could lead to the same consequence.

If I have a good day, I want to catch up. Then I start cleaning up the place. The result is … BANG! I have to go to bed. (No. 4)

Most women reported that they got worse when people put pressure on them. A lot of time and energy were spent being nervous as to whether or not they could live up to the demands made of them. One informant said she had been lying in bed for 3 years because her family had forced her to finish school. The thought of never getting well was also a strain for most of them, as was the fact that no help seemed to be within reach. Other examples mentioned were deaths in the family and conflicts at work.

I used to live with a boyfriend who was very demanding, and that relationship took away all my energy. I was feeling quite well before I moved in with him, but at the end of the relationship I was feeling worse then ever. (No. 1)

Also, in social contexts the body could react with a negative response. All the women became very exhausted by being with others – the more so the worse they were. Going to the movies could result in days of resting in bed. The consequence was often not to accept such invitations but to stay at home instead.

Discussion

Whose beliefs did we hear?

We did not check whether our informants fulfilled the diagnostic criteria of CFS [2]. However, all had received their diagnosis from a neurologist, except one woman who had been diagnosed by her GP. We therefore did not question their status as CFS patients. Recruitment through the local self-help group might have amplified cultural beliefs mediated by the organization. However, the membership connection was pretty loose for most of the participants, and the variety of notions presented contradicts the objection that only the voice of the organization was transmitted. By interviewing participants in their homes, we ensured that not only could the healthiest members attend but also some more disabled ones. Some members were so ill that they could not even talk. Their accounts are missing from this study.

Vulnerability and gender

Our study explores patients’ beliefs and does not assess whether the findings are the “true” causes or not. Knowledge of individuals’ causal attributions may nevertheless provide important information in clinical encounters, especially when they diverge from the doctor's attributions [13].

Other researchers found that, for the majority of CFS patients, the illness starts suddenly with an acute, “flu-like” illness [15]. Several studies suggest abnormalities in lymphocyte function [16]. Patients’ accounts as well as laboratory studies indicate the possibility of cytokine-mediated responses [4], [17]. Chronic ongoing infection has been proposed to explain persisting symptoms, with Epstein-Barr virus [15] or more recently, Mycoplasma [18] as possible agents. However, other reports say that a chronic infection is doubtful [1], [7]. Abnormalities in the cardio-respiratory system (hyperventilation [19], abnormal cardiac function [20], [21], postural hypotension [21]) have also been reported. Recent studies have identified pathology in the nervous system and in the endocrine function; low levels of cortisol [22], [23], abnormal functioning of cerebral serotonergic systems [23], and abnormalities in brain perfusion [24]. Psychological factors have also been explored [1], [25]. However, the patients strongly resist psychological and psychiatric explanations [26].

Most of our informants thought that their way of living before becoming ill had caused their immune system to weaken, and that this led to disease. Previous studies have mostly focused on causes related to different organs, not on how the patients have lived their lives, and have not discussed the impact of gender. All the women in our study led very active lives before getting ill, and many of them felt worn out. They related this to gender role habits and expectations, living in a culture where women are seldom able to take the time to relax but are expected always to go on in order to satisfy their own and others’ demands. Yet their stories were very different from narratives about burnout and other variations of fatigue in everyday life.

The issues identified by our informants agree well with the notion of “doing gender” [27] and the possibility that women's lives may be embodied as a specific kind of vulnerability, mediated through the immune system. Since our sample included only women, we do not know to what extent the issues reported are also valid for men. Even though gender equality has come a long way in Norway, our informants confirmed statistics reporting that women still maintain the major responsibility for family and home care. However, we do not believe that women are the only ones who experience pressure being put upon them, workload burdens without subsequent relaxation, emotional conflicts, assumed problem-solving, being nervous as to whether they can live up to the demands of their surroundings, or emotional strain related to family and work.

Purposes and reasoning involved in causal attributions

Studying patients with myocardial infarction, French & co-workers refer to the literature concerning the causal attributions people make for illness, and how these relate to the emotional impact of the illness, as well as the coping strategies employed [28]. They criticize research on causal attributions where people's explanations are reduced to simple categories, suggesting that an understanding of the purposes and reasoning involved in making causal attributions, rather than just the outcomes, may lead to a richer understanding of the attribution process, and in particular why people make the attributions they do. Applying these points to our study, we might question why the women make the attributions presented here and the purposes these attributions serve for the individuals who make them.

Several studies demonstrate the close relationship between the shame and stigma experienced by patients with medically unexplained disorders when they see their doctors [29], [30]. Werner & co-workers demonstrated how women with chronic pain struggle hard to obtain credibility and maintain dignity, rejecting a role as “the kind of woman who complains of everything” when the illness is attributed to hysteria or discarded as imagined or psychological [30]. Werner's informants negotiated a picture of themselves that fits normative, biomedical expectations of what illness is and how it should be performed or lived out according to a gendered work of credibility as woman and as ill. Putting together these accounts with the findings from our study, we might propose that women with CFS run the risk that healthcare encounters drain their energy and maintain their condition.

So what?

There are still many unanswered questions concerning CFS. We do not know why some women become ill while others do not. Most women who live a stressful life do not get CFS. Why exactly CFS hit our informants is hard to say. More studies are needed exploring hypotheses regarding the complex interplay between molecular predispositions and more or less gendered lifestyle issues.

Doctors need to challenge their strong beliefs about how things are, especially in respect of the medically unexplained conditions where facts still remain unresolved. By recognizing this, the doctor may contribute to the establishment of common ground for understanding and managing the condition.

Key Points

Chronic fatigue syndrome (CFS) is a disabling illness whose cause is still unknown, although many contributing factors have been identified.

• Women with CFS describe how gendered obligations related to emotional and practical issues can lead to external and internal demands.

• Encountering such demands without having the conscience to relax, women may feel forced to continue in a way they think affects the body's vulnerability, modifies immune responses, and leaves them susceptible to CFS.

• Doctors can contribute to establish common ground for understanding and managing the apparently unexplained conditions in an individualized way by inviting patients to share their beliefs and experiences.

The study was funded by the Norwegian Research Council.