Psychosomatics 41:253-261, June 2000
© 2000 The Academy of Psychosomatic Medicine
A Nine-Year Follow-up of People Diagnosed With Multiple Chemical Sensitivities
Donald W. Black, M.D.,
Christopher Okiishi, M.D., and
Steven Schlosser, M.A.T.
Received May 25, 1999; revised September 17, 1999; accepted October 22, 1999. From the Department of Psychiatry, University of Iowa College of Medicine and University of Iowa Hospitals and Clinics, Iowa City, Iowa. Address correspondence to Dr. Black, Psychiatry Research–MEB, University of Iowa College of Medicine, Iowa City, IA 52242-1000.
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ABSTRACT
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The authors assessed self-reported health status and clinical symptoms in people reporting multiple chemical sensitivities (MCS) at a 9-year follow-up interview using structured and semistructured instruments and self-report questionnaires. Of the original sample, 18 people (69%) consented to an interview. By use of the best estimate diagnostic method, 15 subjects (83%) met DSM-IV criteria for a lifetime mood disorder, 10 (56%) for a lifetime anxiety disorder, and 10 (56%) for a lifetime somatoform disorder. None of the subjects met the criteria for a substance use disorder (current or lifetime). The Illness Behavior Questionnaire and the Symptom Checklist-90-Revised results showed little change from 1988 and remained significantly different from the control group on many subscales. The authors conclude that the subjects remain strongly committed to the diagnosis of MCS, and although improved since their original interview, many remain symptomatic and continue to report ongoing lifestyle changes.
Key Words: Chemical Sensitivity • Environmental Illness • Clinical Ecology
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INTRODUCTION
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Multiple chemical sensitivities (MCS) is an acquired condition attributed to low-level chemical exposures.1,2 MCS is not generally recognized by mainstream medicine. A scientific council of the American Medical Association has urged that MCS not be considered a recognized diagnosis.3 Nonetheless, an increasing amount of literature has documented that many people in the United States and elsewhere have developed a similar set of symptoms that they and some of their physicians attribute to an extreme sensitivity to natural and synthetic chemical "incitants."4–6 People diagnosed with MCS are polysymptomatic; they report becoming ill when exposed to low concentrations of chemicals tolerated by most people and report that improvement is associated with avoidance of suspected compounds. Most people diagnosed with MCS report sensitivity to multiple unrelated substances.2,7
A group of nontraditional medical practitioners called clinical ecologists (or "environmental physicians") claim special expertise in diagnosing and treating MCS. They believe the disorder is widespread and frequently masked by a traditional medical diagnosis, such as depression.8 Proponents of MCS believe the syndrome is relatively new and is related to the exponential growth in the number of synthetic organic compounds in the past 50 years.9,10 The medical community has remained largely skeptical, in part because MCS has never been reliably linked to objective physical examination findings or to abnormal laboratory values.3,11,12 The World Health Organization recently held a conference in Berlin to consider MCS.13 Because the validity of MCS has not been established, conferees urged that research should continue to explore the phenomenon. They proposed the neutral term idiopathic environmental intolerances (IEI), because many people are reported to develop symptoms in response to environmental agents other than chemicals (e.g., electromagnetic waves). For this reason, we will refer to these disorders as MCS/IEI.
Despite the alarm with which its proponents view MCS/IEI, follow-up data are limited.14,15 Terr16 concluded that 96% of 50 subjects were unchanged or worse at a 2-year follow-up. A recent 1.4-year follow-up of 35 people seen in an occupational health clinic found that 46% reported improvement, even though the subjects had a mean of 7.4 more symptoms than at their initial evaluation.7 We recently had an opportunity to reinterview subjects with MCS/IEI 9 years after an index assessment.4,17 To our knowledge, this represents the longest follow-up of people diagnosed with MCS/IEI in the medical literature.
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METHODS
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Baseline Assessment
We recruited 26 subjects and interviewed them between June and September 1988. All reported being overly sensitive to chemicals, foods, or microorganisms (e.g., Candida albicans), and all subjects had been diagnosed chemically sensitive by a clinical ecologist; the exact diagnosis differed from subject to subject. The Diagnostic Interview Schedule (DIS) was administered to assess major (Axis I) mental disorders,18 and the Structured Interview for DSM-III Personality Disorders19 was used to assess Axis II. Subjects were asked to complete the Illness Behavior Questionnaire (IBQ),20 the Symptom Checklist-90-Revised (SCL-90-R),21 and the Personality Diagnostic Questionnaire.22 In addition, we administered a semistructured instrument to gather information on the subjects' past and present occupational, educational, and marital status; on the subjects' interaction with the health care system, including health care providers and treatment recommendations; on the occurrence of psychological stress or social constraints placed on the subject because of the illness; and on the subjects' opinion of their illness and motivation for seeking treatment. Baseline characteristics of the sample have already been reported.4,17 Only baseline data from the 18 subjects who participated in the follow-up interview will be used in this report.
Field Follow-up
Follow-up interviews took place from April through August 1997. Letters were first sent to the 26 subjects requesting their participation in an interview. Most were still living at their original address, but some had moved; new addresses and telephone numbers were obtained through hospital records, the Iowa Department of Motor Vehicle records, and through a search of local telephone directories. Contact letters were followed up with telephone calls to explain the study further and to arrange an interview. If the subject lived within a 3-hour driving radius, interviews were offered in the subject's home (n=15); otherwise, interviews were conducted by telephone (n=3). Written informed consent was obtained from all participants, according to procedures approved by our Institutional Review Board.
Assessments
Subjects were evaluated by a fourth-year medical student (C.O.) trained to administer the Structured Clinical Interview for DMS-IV disorders.23 A semistructured instrument to gather demographic, illness, and follow-up data patterned after the one used in the original study was also administered. We asked subjects to complete several self-report instruments including the IBQ, the SCL-90-R, and the Personality Diagnostic Questionnaire-IV.24 Subjects were assigned a DSM-IV25 diagnosis by the study psychiatrist (D.W.B.) using the "best estimate method" in which all information is taken into account.26 This best estimate method included raw interview data from 1988 and 1997, questionnaires, narrative reports, and in some cases, hospital records. An overall improvement rating was also assigned by the study psychiatrist, patterned after the Clinical Global Improvement Scale.27 The ratings were "remitted," "very much improved," "much improved," "improved," and "no change/worse." To be rated as "remitted," the subject had to deny use of any treatments (including avoidance) or deny any signs or symptoms related to MCS/IEI.
Control Group
Through a hospital newsletter17 we recruited 26 control subjects for the original study comparable in age and gender to subjects with MCS/IEI. Control subjects were screened to exclude people with a major mental disorder using the Schedule for Affective Disorders and Schizophrenia—Lifetime Version.28 Subjects completed the IBQ and SCL-90-R. Their mean age was 32.4±10.4 (SD) years, and 20 (77%) subjects were women. They were not retested for this follow-up study, and the results were compared to both the 1988 and 1997 results.
Statistics
All tests were performed at the two-tailed 0.05 significance level. The Fisher's exact test was used for comparisons of dichotomous outcomes between independent groups [comparison group vs. MCS/IEI group at baseline (T1) and comparison group vs. MCS/IEI group at follow-up (T2)]. For comparisons of paired dichotomous outcomes among MCS/IEI subjects from T1 to T2, we used the exact probability McNemar's test based on binomial tables.29 Student's t-test was used to compare the means of continuous outcomes for the comparison group versus the MCS/IEI subjects, separately for T1 and T2. The paired t-test was used to compare the means among MCS/IEI subjects at T1 versus T2.
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RESULTS
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We reinterviewed subjects (16 women, 2 men) whose mean age was 59.8±13.8 years (range=36–87 years) (see Table 1). Of the original subjects, 7 (27%) chose not to participate, and 1 (4%) subject could not be located, although we learned that she was still living, and all of the subjects were still alive. A comparison of baseline characteristics of the 18 reinterviewed subjects and 8 noninterviewed subjects showed no significant differences in age, gender, educational level, or marital status.
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TABLE 1. Characteristics of 18 subjects with multiple chemical sensitivities or idiopathic environmental intolerance (MCS/IEI) followed up in 1997
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Of the 18 subjects, 13 (72%) reported that their diagnosis was "environmental illness," and a similar number reported a diagnosis of "environmental allergies." Other terms used by the subjects included MCS, yeast disease or candidiasis, and immune dysregulation syndrome. Most reported that their clinical ecologist had used several of the terms to describe their condition. Commonly reported symptoms included headache, dermatologic complaints (e.g., rash), gastrointestinal complaints, and pain.
All subjects reported believing they had MCS/IEI, but only 7 (39%) remained under the care of a clinical ecologist (Table 2). Two subjects (11%) were rated as "remitted," while all but two of the remaining reported various degrees of improvement. Subjects tended to give themselves a higher rating, and 5 (28%) felt they had remitted. Eleven subjects (61%) attributed their improvement to "nothing in particular or tincture of time." A similar number reported benefit from prayer. Special treatment regimens, hospitalizations, support groups, and books/articles were also cited as reasons for improvement. All but two of the subjects acknowledged that their diagnosis was controversial. Interestingly, 12 of 15 subjects (80%) who were systematically interviewed about their first-degree relation reported that they have relatives with MCS/IEI.
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TABLE 2. Illness ratings in 18 subjects with multiple chemical sensitivities or idiopathic environmental intolerance (MCS/IEI) and effect on subjects' lifestyles
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Table 3 presents trends in treatments and effect on lifestyle. (Baseline data shown are only for the 18 subjects reinterviewed in 1997.) Current treatments include simple avoidance, special diets, vitamins or supplements, primrose oil, neutralizing injections or drops, douches, cleansing enemas, charcoal/cotton filter masks, or oxygen given through nasal cannula. Overall, significantly fewer treatments were being used in 1997 than in 1988 (Wilcoxon Rank Sum test, P= 0.0002). In particular, fewer used primrose oil, charcoal/cotton filter masks, or cleansing enemas. Fifteen subjects (83%) had modified their home to make it "safer." Over half (56%) reported having been hospitalized in a special facility for treatment of MCS/IEI. Subjects showed a strong interest in their condition. All acknowledged reading about MCS/IEI; 11 (61%) were currently attending support groups. Subjects were asked about the adverse effect of the illness on their lifestyle; more than half (56%) had stopped working (or had reduced their homemaking responsibilities), 3 subjects (17%) were advised to move to a new location, and 11 subjects (61%) acknowledged being less social. Sixteen subjects (89%) reported being pleased with their current MCS/IEI treatment.
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TABLE 3. Treatment for multiple chemical sensitivities or idiopathic environmental intolerance (MCS/IEI) and lifestyle affects reported in 18 subjects: 1988 and 1997
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Table 4 presents data on current and lifetime prevalence of major mental disorders. Lifetime mood and anxiety disorders were found in 83% and 56% of subjects, respectively; 9 subjects (50%) met lifetime criteria for somatization disorder. Current disorders were less frequent. Since 1988, two subjects had experienced a manic episode and now meet criteria for bipolar disorder; one was experiencing a current depressive episode. Two subjects had binge eating disorders and received a diagnosis of an eating disorder not otherwise specified. No subject met criteria for a substance use disorder, current or lifetime.
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TABLE 4. Current and lifetime DSM-IV psychiatric diagnoses in 18 subjects with multiple chemical sensitivities or idiopathic environmental intolerance (MCS/IEI)
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Table 5 and Table 6 present data from the SCL-90-R, the IBQ, and the Whiteley Index for the 15 subjects who completed them in 1988 and 1997, as well as data from the control subjects. For both the SCL-90-R and the IBQ, there were no statistically significant differences for the results at T1 and T2. At baseline (T1), 3 SCL-90-R subscales were significantly different from those of the screened control subjects (somatization, obsessive-compulsive, and phobic anxiety). At follow-up, the somatization and obsessive-compulsive subscales remained significantly different from the screened controls, along with the General Symptoms Index. For the IBQ, the results at T1 and T2 showed several significant differences from the screened controls. At T1, these differences included disease conviction, psychological versus somatic perception of illness, irritability, and the Whiteley Index; at T2, all but irritability remained significant. In examining the Whiteley Index (Table 6), there were no statistically significant differences for subjects with MCS/IEI at T1 and T2; however, at both T1 and T2 there were many significant differences with the control subjects.
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TABLE 5. Symptom Checklist-90-R (SCL-90-R) and Illness Behavior Questionnaire (IBQ) results in 18 subjects with multiple chemical sensitivities or idiopathic environmental intolerance (MCS/IEI) in 1988 (T1) and 1997 (T2)
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TABLE 6. Whiteley Index results in 18 Subjects with multiple chemical sensitivities or idiopathic environmental intolerance (MCS/IEI) in 1988 (T1) and 1997 (T2)
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Case Report
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In 1988, Mr. A., a 29-year-old shop clerk, reported suffering from a "toxic brain syndrome." The disorder, he believed, resulted from a sensitivity to farm chemicals but eventually included everything from underarm deodorant to perfume. "Chemical reactions" caused mental confusion, speech difficulties, and even loss of consciousness.
Mr. A. was well until age 26 when his sensitivities began, but he was presently disabled. He had sought treatment at many hospitals, including one that specialized in treating environmental illnesses. His physician recommended that he relocate to the Southwest for his health. Citizens in his small Iowa community banded together to help raise money for the move.
Back in Iowa to visit his family, Mr. A. agreed to an interview. He used a wheelchair, believing his sensitivity to chemicals had severely weakened his lower extremities. He felt better living in the Southwest; he reported following a special rotation diet, taking hypoallergenic vitamins, taking "neutralizing" drops sublingually to "build immunity," and using oxygen when "necessary." He lived in a special trailer free of carpeting and drapes with many ceramic surfaces. For his main treatment, he avoided "bad" chemicals. He expressed confidence in his clinical ecologist but not in the traditional physicians who had told him his symptoms were psychologically based. He socialized mainly with other chemically sensitive people he met through a support group.
In 1997, we found Mr. A., now 36 years old, in his hometown in Iowa. He returned from the Southwest several years earlier. He lived in a tidy, one-bedroom apartment, and until being awarded disability benefits 2 years earlier, he had been helped financially by his community. He no longer used a wheelchair and said he had gradually regained his strength, but he was still careful to follow his clinical ecologist's recommendations. He rated himself as "very much improved" despite ongoing symptoms including joint pains, sore throat, and headaches attributed to MCS/IEI. He still followed a rotation diet, took supplemental hypoallergenic vitamins, and avoided chemical exposures by restricting his social life. He had not married and had never experienced an intimate relationship. Though friendly and cooperative, Mr. A. displayed a bland affect and a detached, aloof manner. Clearly interested in his disorder, he conveyed a sense of satisfaction with his special position in the community created by his illness.
In assigning a lifetime psychiatric diagnosis, we gathered interview data, questionnaires, and hospital records. In the past, Mr. A. had received a diagnosis of an atypical conversion disorder because no medical explanation had been found for his lower limb weakness. He had a remote history of major depression, and he met current and lifetime criteria for an undifferentiated somatoform disorder. (He had multiple unexplained somatic complaints, but he failed to meet criteria for somatization disorder.) We assigned a physician global rating of "improved."
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DISCUSSION
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To our knowledge, this is the longest follow-up study of people diagnosed with MCS/IEI to date. As mentioned earlier, two relatively brief follow-up studies have been reported,7,16 and both suggest that the complaints of MCS/IEI are persistent, at least in the short term. Our follow-up study suggests that people diagnosed with MCS/IEI retain their illness belief over a long period of time, and they continue to endorse symptoms that contributed to the original diagnosis. Without exception, our subjects continued to believe they had MCS/IEI, and most subjects continued to report multiple somatic complaints. The subjects appear to understand the controversial nature of their condition, but this understanding has not undermined their confidence in the diagnosis; nearly 40% continued to seek treatment from a clinical ecologist. The subjects remained satisfied with their medical care, although one subject complained that her mainstream doctors made her "feel like a pariah."
People diagnosed with MCS/IEI are generally advised to avoid places or situations in which they might encounter chemical fumes or odors.14,15 This may prompt patients to move to locations they believe are less polluted, to quit work if they believe it contributes to their disorder, or to reduce their social interactions. Our subjects were no exception, and the extent of their treatment and intrusion into their lives can be seen in Tables 2 and 3. Besides avoidance, other treatments reported included special diets (e.g., rotation), vitamins and other supplements (e.g., antioxidants, essential fatty acids, garlic), primrose oil, the use of charcoal (or cotton) filter masks, special enemas/douches, oxygen per nasal cannula, and the use of neutralizing injections/sublingual drops. None of these treatments were prescribed on the basis of careful, controlled clinical trials. Three subjects reported using oxygen, yet only one had a medical reason to receive it (emphysema). Two subjects were either injecting themselves with histamine or serotonin (or using sublingual drops), which is a practice meant to prevent or abort "chemical reactions," during which patients reportedly develop physical and psychological symptoms of illness in response to strong odors.
The frequency of psychiatric diagnosis in the sample merits explanation. The rates are substantially higher than those reported in our original study.4 For example, in our 1988 study lifetime major depression was diagnosed in 30%, yet 72% have been diagnosed in the current study. The original study's diagnoses were based on DIS results alone, whereas current figures are based on the "best estimate method," in which all relevant data are taken into account. In one case, for instance, a 75-year-old woman was diagnosed in 1988 with generalized anxiety disorder (GAD) using the DIS. Now 84-years old, her 1997 interview and medical records dating back to the 1930s confirm an episode of major depression that required treatment (diagnosed at the time as a "psychoneurosis") as well as GAD. None of the subjects met current or lifetime criteria for a substance use disorder, a finding that other groups of investigators have reported as well in people diagnosed with MCS/IEI.5,30 There is no clear explanation for this finding, but it could be the personality structure or health beliefs of someone predisposed to MCS/IEI may preclude the development of substance abuse.
The prevalence of somatization disorder is also much higher now than in 1988 (50% vs. 17%). Several subjects missed a diagnosis of somatization disorder in 1988 by one or two symptoms, and now they meet the criteria. The additional time for symptoms to accumulate and be reported by the subject, less stringent DSM-IV criteria for somatization disorder (requiring 8 symptoms rather than 13), and the use of the "best estimate method" help explain the increased prevalence of somatization disorders in 1997 compared with 1988. It could be argued that because MCS/IEI has no validity as a medical disorder, all the subjects are hypochondriacal; that is, the subjects believe they have a specific illness that cannot be medically verified. Because a clinical ecologist has made or has confirmed the diagnosis of MCS/IEI in most cases, and therefore promoted the illness belief, the hypochondriasis must be considered in part iatrogenic.31
The high rate of anxiety disorders, particularly panic disorder, also merits comment. For many subjects, their description of "chemical reactions" is nearly indistinguishable from panic attacks, which probably explains the high frequency of the diagnosis among our subjects. The phobic avoidance they develop in response to the reactions leads to a condition one investigator32 has called "toxic agoraphobia," because it is functionally indistinguishable from agoraphobia. Two recent studies used provocative challenges to assess the possible connection between MCS/IEI and anxiety. Leznoff33 exposed 15 subjects to their self-reported chemical "trigger" substances, which induced hyperventilation in 73% and a corresponding fall in PCO2. Binkley and Kutcher34 administered intravenous sodium lactate to five subjects with MCS/IEI, which induced a panic attack in each. These two studies strongly suggest that anxiety may be a causal mechanism in at least some cases of MCS/IEI. For many, it appears that they have developed "odor-triggered" panic attacks.35
All but two subjects were rated as having improved from the time of their first interview. Our impression was that, on the whole, most subjects were less outwardly symptomatic, were using fewer treatments, and were less likely to be under the care of a clinical ecologist than in 1988. Nonetheless, most still modified their lives to conform to the disorder. Avoidance was still used as a coping device in 83%, and nearly 75% continued to be less social than before developing MCS/IEI. All reported that they read about MCS/IEI, and more than 60% still attended support groups. As Brodsky36 has observed, many still "organized their own and often their spouses' lives around their condition." Perhaps this tendency to involve others in their illness explains why so many report having relatives with MCS/IEI.37
Though five subjects (28%) indicated they had recovered or remitted, upon review of their interview and questionnaire data, only two (11%) subjects appeared to be entirely asymptomatic—that is, reported no symptoms nor followed any treatments. A 53-year-old man, for example, indicated that he had been healed through prayer and love from a supportive family. One of the most unusual cases we encountered involved the 84-year-old woman referred to earlier. She had recovered spontaneously from her MCS/IEI after a left hemispheric stroke that resulted in an expressive aphasia. She was able to indicate "yes" or "no" to questions, and her husband of more than 60 years was able to confirm her history. Although she still avoided some exposures (e.g., perfumes) and followed a rotation diet (from habit, her husband indicated), she was otherwise asymptomatic. She was rated as having "very much improvement."
Despite the self-reported improvement, subjects remained symptomatic according to SCL-90-R and IBQ results. In fact, our subjects' responses to the questionnaires did not differ statistically from when originally interviewed, and yet on both occasions there were substantial differences from the control group. SCL-90-R results show that subjects differ from the control subjects in obsessive-compulsive, somatization, and general symptom index dimensions. These data provide further confirmation of the diagnostic data showing high rates of somatization disorder and anxiety disorders, which was not unexpected. The IBQ confirmed that subjects remain preoccupied with their symptoms (disease conviction), reject responsibility for their illness, and seek medical and not psychological treatments (psychological vs. somatic perception of illness), and remain hypochondriacal (Whiteley Index). Additionally, they remain convinced that they have a serious illness; they become upset when their illness is not taken seriously by others and are not easily reassured by physicians that nothing is wrong. These findings are partially compatible with those of Simon et al.,30 who reported elevated scores on the Whiteley Index and the depression, anxiety, and somatization subscales of the SCL-90-R, and Bell et al.,5 who reported elevations on the depression, anxiety, somatization, obsessive-compulsive, phobic anxiety, and general symptom index for subjects with MCS/IEI but not for control subjects.
Our conclusions should be placed in perspective. The sample was small, follow-up was incomplete, and the subjects may not be representative of people with MCS/IEI as a whole. The subjects were not randomly selected but were recruited through support group membership, hospital clinic attendance, or word of mouth. Belonging to support groups, having friends with MCS/IEI, or attending clinics may be associated with greater psychiatric comorbidity. Further, the demographic findings of the 18 subjects who were followed up were not different from those of the 8 subjects from the original sample who chose not to participate; this suggests that our findings are probably representative of the original sample. Yet, despite this possible bias, the findings of our baseline assessment were similar to those reported by other investigators in terms of gender ratio, symptoms and treatments reported, and frequency of psychiatric comorbidity, which suggest that our sample is relatively typical for people who are diagnosed with MCS/IEI.5–7,28,33 Additionally, the comparison subjects were not specifically matched for the characteristics of the subjects with MCS/IEI, nor were they retested in 1997; this would have been desirable, but it was not possible because of budgetary constraints.
In summary, we report a 9-year follow-up of people diagnosed with MCS/IEI. The results show that the subjects' illness belief is persistent. Although most subjects report improvement, the subjects remain symptomatic. Most continue to participate in treatment modalities originally prescribed by their clinical ecologist, although they are not following as many treatment recommendations as in 1988. Psychiatric comorbidity is substantial. Subjects are highly likely to meet criteria for mood, anxiety, and somatoform disorders, and they continue to be free of substance use disorders. Subjects acknowledge the controversial nature of their diagnosis, and they remain satisfied with their medical care and treatment of MCS/IEI.
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ACKNOWLEDGMENTS
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The authors acknowledge the statistical assistance of Patrick Monahan, M.S.
This research was supported in part by a grant from the Environmental Sensitivities Research Institute, Baltimore, Maryland, and was presented in part at a meeting of the American Chemical Society, Boston, Massachusetts, August 26, 1998.
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ABSTRACT
INTRODUCTION
