After having experienced an epidemic rise of postpartum depression in the 1980s, the Netherlands in the 1990s saw an impressive epidemic of obstetric “pelvic instability.” As there are no objective ways of confirming this diagnosis, pelvic instability has to be considered another example of a fashionable disease. This review describes the pathogenesis of epidemics of this and other fashionable diseases (postwhiplash syndrome, chronic fatigue syndrome, amalgam disease, etc.). It describes their similarities to pseudodiagnoses made by “alternative” practitioners. Some differences remain between these 2 types of nondisease, but labeling of both types of disorders as organic diseases is deleterious to the patient.
Eine Hauptursache der Armut in den Wissenschaft ist meist eingebildeter Reichtum. Es ist nicht ihr Ziel, der unendlichen Weisheit eine Tür zu öffnen, sondern eine Grenze zu setzen dem unendlichen Irrtum.
—Galileo Galilei, according to Brecht1
[“A most rich imagination is an important factor in the poverty of knowledge. The goal is not to open a gate to infinite knowledge, but the setting of a boundary to infinite error.”
—“Free” translation from the German—Ed.]
About 10 years ago a new disorder emerged in women in the Netherlands, and quickly spread through waiting rooms of gynecologists and midwives. It consisted of pregnant and sometimes puerperal women suffering from so-called pelvic instability (PI). The women complained of difficulty in walking as a result of severe pelvic pain. They frequently had to use crutches or even wheelchairs. In less serious cases they wore pelvic slings drawn tightly around the hips.
Pain in the symphyseal area (“symphysiodynia”) during pregnancy has for a long time been a well-known phenomenon, considered to be only a transient discomfort. It has no specific treatment, and resolves spontaneously after delivery. But the apparently new epidemic of pelvic pain forced the Dutch Gynecological Society (NVOG) to publish an official position paper on the subject.2 The paper pointed out that the pathophysiology of the complaint is unknown, that there are no objective criteria on which the diagnosis can be based, and that there is no known scientifically proven therapy. The prognosis is considered favorable, with only in 1 in 2000 women having chronic, persistent pain. The NVOG warned about institutes or persons claiming to have specific treatments for the problem, because such treatments tend to have commercial motives and tend to raise unrealistic expectations. A recent Swedish study showed that there was no evidence of a correlation between the degree (usually minor) of symphyseal distension and the severity of the pelvic pain experienced by PI patients.3 The study supported the statement of the NVOG on the impossibility of making an objective diagnosis of the disorder.
In 1990 patients formed a powerful lobby—the patient union (Vereniging voor Patiënten met Bekkenproblemen in relatie tot Symfysiolyse) opposing the scientific opinion. In 1996, supported by a small group of followers, several advocate professionals formed the Rotterdam Spine and Joint Centre, which devotes itself almost exclusively to the treatment of this syndrome. The center acquired an official status as an institute for rehabilitation by the Ministry of Health, although it did not fulfill usual criteria, and even although the Council of Healthcare Insurance had recommended against the qualification. Recommendations of the patient union vary from a nearly complete prohibition of fundal expression and forceps deliveries to advising cesarean section. In cases of prolonged persistence of PI symptoms, some surgeons perform orthopedic fixation of what they perceive as hypermobile sacroiliac and symphyseal joints. A surgeon reporting in a Dutch midwives’ periodical on his first 50 surgically treated patients called the result “hopeful,” but stated that more studies are necessary in order to determine the proper indications for this “not risk-free” operation.4 He operates on an average of 25 women with PI per year. The patient union classifies Dutch hospitals as to adequacy of the staff’s knowledge about the syndrome.
Many Dutch gynecologists, observing the epidemic of PI in their practices, experience a strong sentiment du déjà vu. In the 1980s Dutch women who had given birth were terrified by an epidemic of postpartum depression (incorrectly named “postnatal depression,” PND). In that period there was much skepticism among obstetric professionals, who were accused of heartlessness and lack of professional knowledge, not unlike the situation with PI patients. Accompanying that epidemic, too, was an active patient union, supported by some physicians who claimed to know the answer to the problem. The experts related directly to the patients, without having convinced their colleagues of the value and effectiveness of their treatment.
The founder of the theory behind PND was British general practitioner Katharina Dalton. She had earlier acquired some notoriety with her hormonal management of premenstrual syndrome (PMS). She rejected the importance of psychosocial factors for PND, just as she had for PMS. She presented the hypothesis that PND was a “hormonal depression,” responding favorably to hormonal treatment. An interview with her in the women’s magazine Viva in February 1981 fired the starting gun for the PND epidemic. Additional stimuli soon followed; an article on PND in the feminist magazine Opzij, by author Renate Dorrestein, soon appeared. She stated that “if men suffered from PND serious treatments would have been developed much earlier,” and asked, “Why are 20 000 women per year not taken seriously?” This number results from a calculation: 10% of the women giving birth could be expected to get PND, and in the Netherlands there are about 200 000 births per year. On top of this publicity a film, Ademloos, was made by Mady Saks with the well-known Dutch actress Monique van der Ven in the leading part as a woman with PND. Dr Loendersloot, a gynecologist in the district hospital of Wageningen, specialized in PND and provoked an enormous migration to his clinic from all over the Netherlands.5 He admitted to fellow gynecologists that his treatment was “controversial,” but promised scientific evaluation. A few years later he came to the conclusion that his treatment (the progestational hormone dydrogesterone) was not more effective than placebo.6 This study did not get much publicity, but the patient union removed the term PND from its name and now devotes itself to a broader field of gynecological problems. It currently seems to be withering.
PND and PI have much in common with other epidemics, as summarized in Table 1. American author and historian Elaine Showalter, an expert on the history of hysteria and somatiform disorders, calls these epidemics “hysterical epidemics” in her erudite book Hystories.7 She does not use the word hysteria in a pejorative way: “I don’t regard hysteria as weakness, badness, feminine deceitfulness, or irresponsibility, but rather as a cultural symptom of anxiety and stress.”
Fashionable diseases show similarity to epidemics of unexplained complaints as occurring after stressful collective experiences (airplane crashes, massive explosions, war situations, and floods); after the discovery of pollution of the soil; or after announcements of environmental activists against high-voltage cables or electromagnetic fields in the environment. Fashionable diseases are by no means new phenomena; the epidemic of grande hysterie in Paris around 1880 is an archetype. During the reign of Charcot as superintendent of the hospital La Salpêtrière, the percentage of hospital admissions under the diagnosis of “hysteria” rose from 1% in 1841 to 17% in 1883. Hysteria was at that time considered to be a neurological disease with possible involvement of the ovaries. Charcot paid special attention to the ovaries and announced his discovery of “ovarian sensitivity,” which prompted him to develop an apparatus, the ovarian compressor, as a therapeutic device. Critics of Charcot suspected iatrogenic factors contributed to the epidemic. The widely publicized iconography of hysteria became the reigning model of how to act when “insane” for that period of history. Earlier in the 19th century other fashionable diseases were “railway spine,”8–10 “neurasthenia,”7 and “chlorosis.”11(pp247–254)
Nearly all contemporary fashionable diseases—and here I borrow from Showalter—have a characteristic and rather stereotypical pattern. There either is no detectable somatic abnormality present or it is only a minor one, bearing no relation to the severity of the complaints. Most bearers of this problem have made a disappointing march through the regular medical world, which has often ended in the “alternative” medical fringe.
Resentment against regular professionals can easily be activated and is frequently present. After years of being “undiagnosed” there, the patients feel joy and vindication from description of a new disease, and a name given to a hitherto vague and diffuse set of complaints.
Nearly simultaneously a patient organization is formed, offering “postgraduate training” to doctors and patients and launching warnings against the minimizing of their symptoms, which might have severe consequences. Press interviews of patients appear, with books, television programs, and movies that present the suffering of the patients in a imposing and strongly emotional way. Many patients recognize themselves in the picture and diagnose themselves. The resulting joy is of short duration however, because the simplistic medical explanations supplied by the physician-advocates lead to further somatization and mental fixation on the symptoms. The cycle prevents more effective strategies for deal with the problem.\
The complaints and the syndrome persist, frequently leading to social isolation and relationship problems. They precipitate conflicts with examining doctors, who have to judge the patient’s ability to work and her right to financial compensation.
Physician and scientist advocates express themselves carefully in the presence of colleagues but differently when they address their patients. They promise scientific justification in the future.5,6 That mostly comes to nothing. Fashionable diseases also act as magnets for quacks and “alternative” practitioners. Miraculous cures become common; one Dutch faith healer reports on his Web site several cures of long-standing pelvic instability.
The incidence of these conditions varies greatly among countries, a phenomenon that begs for a psychocultural explanation, as these differences are unexplainable in biological terms. Similarly, young women are overrepresented, as in other conditions that are not relatable to biological differences between the sexes, such as chronic fatigue syndrome and postwhiplash syndrome. Finally, the impact of the premorbid personality and the ease with which these diseases can be induced in vulnerable patients was demonstrated in an elegant study of postwhiplash syndrome.12
The role of financial and social/medical factors in initiating and maintaining a fashionable disease is confirmed by observations on—again—postwhiplash syndrome (in Lithuania and Canada) and RSI (in the Netherlands). The absence of a medico-legal context and the lack of public awareness of serious sequelae for late whiplash syndrome in Lithuania accounts for nonexistence of the condition there.13 A report from Canada showed that the prognosis of whiplash injury improved after the elimination of compensation for it.14 The persistence of postwhiplash syndrome in the Netherlands is partially due to a consensus of the Dutch Neurological Society, which drafted a number of criteria supporting the diagnosis. The Dutch Orthopedic Society decided in 1995 not to accept postwhiplash syndrome as a diagnosis. In the Netherlands 25% of all auto insurance premiums goes to examinations and compensation for postwhiplash injuries. In complicated cases up to 30 professionals are sometimes involved. The Dutch Ministry of Health made a second observation underlining the major role of social factors in these syndromes. In 2001 it started a campaign to increase public awareness of the dangers of acquiring RSI, but the ministry stopped the campaign abruptly in January 2002, because of its paradoxical effect—the number of RSI complaints increased!
There generally is a lot of public sympathy for sufferers from fashionable diseases. The Dutch government is subsidizing medical research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with many millions of Euros. As the number of suggested causes of ME/CFS (Table 2) is growing all the time, research will be able to flourish for some time.
ACCEPTABILITY, ADVANTAGES, AND RISKS OF PSEUDODIAGNOSES
Besides the fact that successful medical treatments of these conditions are not available, there is another link that these epidemics have with “alternative” medicine: the way diagnoses are made or handled in the world of “alternative” medicine. Agreement between patient and physician about the diagnosis is crucial for the success of any therapeutic relationship. This fact makes treatment of fashionable diseases along psychosomatic lines difficult, as patients cherish their somatic complaints and do not accept the suggestion of psychological factors.15,16 In both regular and “alternative” psychotherapies, agreement on the pathogenesis of the symptoms must be reached. The effect of a sympathetic mentor is helpful in all kinds of psychotherapy and is, in addition to the healing effects of passing time, an important factor in successes claimed for pseudoscientific methods.17 It is not even essential that the interpretations and hypotheses in the therapeutic process be evidence based, as long as they are not too absurd. In the Netherlands the Union of Reincarnation Therapists reported remarkable successes with “past life therapy” within a very limited number of sessions.18 We once saw a woman who had her psychical equilibrium and confidence restored after having discovered that her problems in finding a partner could be traced back to former lives. But she was disillusioned when—after having seen a prospective partner several times—her new friend left after she told him about the treatment that had led to her mental recovery. “Alternative” therapy of alternatively labeled syndromes and/or fashionable diseases can be considered involuntary psychotherapy for these patients. (Connoisseurs may be reminded of Hahnemanns homoeopathia involuntaria, which was his explanation for the therapeutic successes of “allopathic” remedies: they could always be explained by their homeopathic nature, of which the allopaths were unaware!)
One can obtain favorable nonspecific and suggestion effects, but exposure of underlying incredible or esoteric elements of the theory to outsiders poses a serious and continuing danger to such delicate and subtle systems. Any placebo effect can be annihilated very quickly, as with the above-described woman. The possible beneficial effect of an inactive method must also be weighed against the disadvantage of ascribing complaints to a fashionable pseudodiagnosis. That action may result in amplification of symptoms, which may become more severe and persistent.19 The pregnant woman with symphyseal area pain, which does not seem to attract much attention form her doctor, does have pain, and might be disapppointed in the therapeutic passivity of her physician. But the woman “suffering from PI” runs the risk of orthopedic surgery and lifelong disability—an entirely different set of feelings and perspectives.
THE DIAGNOSTIC CATEGORIES OF THE “ALTERNATIVE” PRACTITIONER
“Alternative” practitioners, who, like all practitioners, must have a diagnosis that is plausible to the patient, can be divided in three groups. The first group accepts standard diagnoses: cancer, multiple sclerosis, reumatoid diseases, skin conditions, infertility, and the many other conditions for which medicine does not always have an easy cure. The second consists of “alternative” practitioners treating fashionable diseases but accepting certain “regular” diagnoses as well. Rational medicine offers these practitioners—free of charge—a group of patients with a respectable but untreatable disease, which they happily accept. The third group of “alternative” practitioners operates “alternative” diagnostic devices or techniques that produce new and entirely “alternative” diagnosis. There are many well-known examples of this method (Table 3). Fighters against quackery are very fond of the last type of practitioners, as they can be criticized easily and their diagnoses are often grounds for humor. For this category of patients and their practitioners, there will always remain the type of problems as exemplified by the above-mentioned woman, who was so happy with her reincarnation therapy. There is little if any objective evidence and therefore little acceptance of these absurd claims in the outside world. Another characteristic of this category is that the result of the treatment is measured by the same “alternative” tools and will frequently be found satisfactory, even if the patient did not experience much progress (“but the apparatus is so sensitive,” etc.).
DIFFERENCE BETWEEN FASHIONABLE DISEASES AND “ALTERNATIVE” PSEUDODIAGNOSES
But now the question: Is there any difference at all between all the funny “alternative” diagnoses and the widely accepted fashionable diseases of the “dominant” regular medical establishment? The similarities are obviously great. In both cases there is no objectively proven disorder, but the patient does get a concrete, albeit incorrect, explanation for her problem. In each case the therapeutic enthusiasm of the practitioner cannot bring about anything more than placebo effects. Negative side effects of “alternative” therapy do, of course, exist (herbal intoxications, dirty or ill-directed acupuncture needles, and uncontrolled chiropractic manipulations, to mention a few) but most “alternative” therapies are “soft,” relatively cheap, and harmless. Although Ambrose Bierce once defined quacks as “murderers without a license,” regular doctors take certain risks in their practice. And if regular doctors endeavor “to treat the untreatable,” they often utilize more expensive, risky, and harmful forms of treatment. In the Netherlands, for instance, osteosynthetic surgery is being performed on women with PI, and amalgam dental fillings are removed without need.20 The costs of compensation, expert reports, and legal actions in such fashionable diseases as ME/CFS and postwhiplash syndrome is enormous. So fashionable diseases have psycho-cultural roots and are also furthered by the availability of compensation through insurance. At the same time, however, a substantial part of the regular medical world does not have much to be very proud of in this affair, neither in the diagnosis nor with respect to the treatments offered.
The main difference between “alternative” pseudodiagnoses and fashionable diseases is philosophical. Doctors, patients, and their advocates defending the diagnosis of a fashionable disease do so in terms derived from mainstream medical knowledge: They mention infections, metabolic problems, anatomic lesions, intoxications, effects of vaccinations, and so on. It makes prima facie rejection of these diagnoses more difficult than in the case of the clear-cut “alternative” ones. It also forces the subject—in clinical and scientific contexts—to be dealt with within the normal medical world. There are none of the taxonomic problems that arise in “alternative” treatments for alternatively diagnosed patients. The “alternative” practitioner and his patient essentially form a solipsistic system, which can function as long as there is no contact with the reality testing in the normal world. And because in real medicine there should be a continuum of physiology, anatomy, pathology, therapy, and prognosis—all compatible with established and fruitful knowledge from physics, chemistry and so on— “alternative” diagnoses will not fit in and are bound to remain “alternative.” This criticism, however, does not mean that regular medicine offering fashionable pseudodiagnoses is doing much better for its patients. Although the patient is often relieved by the recognition a diagnosis produces, and sometimes by the secondary gains as well, one is stuck in a wrong-track diagnostictreatment scheme. The way back to a more realistic appraisal of the complaints is hampered. Hippocrates said to do no harm. But not only can harm be done by wrong or dangerous treatments; false diagnoses can be equally harmful. Knowledge of the history of medicine, with special attention to the fashionable diseases of the past, should enable the medical community to discard “regular” pseudodiagnoses and conclude the present situation. It will be better for our patients, giving us a stronger position and a clearer conscience when criticizing quacks and when scientifically reviewing “alternative” medicine.
- Brecht B. Leben des Galilei. Frankfurt am Main: Suhrkamp Verlag; 1955.
- Bekkeninstabiliteit. NVOG Standpunt No 5. Augustus 1996. Uitgave NVOG Utrecht.
- Bjorklund K, Nordstrom ML, Bergstrom S. Sonographic assessment of symphyseal joint distension during pregnancy and postpartum with special reference to pelvic pain. Acta Obstet Gynecol Scand. 1999; 78(2): 125–130.
- Van Vugt AB. Bekkeninstabiliteit: de visie van een traumatoloog. Tijdschr v Verloskundigen. 1999; 24: 464–467.
- Loendersloot EW, Hilverink E. Management of postpartum depression (PPD) in a special PPD clinic. J Psychosom Obstet Gynaecol. 1983; 2: 53–56.
- Oud-van Zanten MMA. Effectiviteit van Duphaston bij de behandeling van postpartum depressie. Duphar Nederland BV, Medisch Wetenschappelijke Dienst, Sept. 1987.
- Showalter E. Hystories: Hysterical Epidemics and Modern Culture. London: Picador; 1997.
- Railway accidents [editorial]. Lancet. 1873; 2: 429.
- Railway cases: a medico-legal subject [editorial]. Lancet. 1865; 1: 679
- Railway injuries and other injuries of the nervous system [editorial]. Lancet. 1865; 2: 156.
- Shorter E. A History of Women’s Bodies. New York, NY: Basic Books; 1982.
- Castro WH, Meyer SJ, Becker ME, et al. No stress—no whiplash? Prevalence of “whiplash” symptoms following exposure to a placebo rear-end collision. Int J Legal Med. 2001; 114(6): 316–322.
- Schrader H, Obelieniene D, Bovim G, et al. Natural evolution of late whiplash syndrome outside the medicolegal context. Lancet. 1996; 347: 1207–1211.
- Cassidy JD, Caroll LJ, Côté P, et al. Effect of eliminating compensation for pain and suffering on the outcome of insurance claims for whiplash injury. N Engl J Med. 2000; 342: 1179–1186.
- Mayou R, Sharpe M. Treating medically unexplained physical symptoms. BMJ. 1997; 315: 561.
- Renckens CNM. Between hysteria and quackery: some reflections on the Dutch epidemic of “pelvic instability.” J Psychosom Obstet Gynecol. 2000; 21: 235–239.
- Beyerstein BL. Fringe psychotherapies: the public at risk. Sci Rev Alt Med. 2001; 5: 70–79.
- Union of Reincarnation Therapists Web site, http://www.reincarnatietherapie.nl.
- Barsky AJ, Borus JF. Functional somatic syndromes. Ann Intern Med. 1999; 130: 910–921.
- Johnson AG. Surgery as a placebo. Lancet. 1994; 344: 1140–1142.