Dear Editors,

Renckens contends that post partum depression (PPD) and myalgic encephalomyelitis (ME) are ‘fashionable disorders’ and ‘hysterical epidemics’ which have been medicalized by a group of misguided women, aided and abetted by an irresponsible media and a handful of ‘pioneer scientists’¹.  I disagree.

My background is in Health Psychology and Endocrinology. I spent 15 years in Obstetrics and Gynaecology, studying the relationship between psychological symptoms and the sex steroid hormones, and counselling women with PPD and premenstrual syndrome (PMS). I also studied hysteria (once thought to be the cause of PMS) and in 1996, completed a doctorate on ME (idem ditto).

During the seventies, I was one of the few researchers in Holland with specialist knowledge of PPD. When I discussed the latest findings with physicians, most were either not interested or they regarded PPD as a relatively minor problem with psychodynamic origins. I’m sure that they did what they thought was best for their patients but because of the lack of information, many had an oversimplified view of the illness and could not understand their patients’ experience. Consequently, a lot of Dutch women were given unhelpful advice and inadequate treatment.

I asked the most widely read medical journal if they would consider a review on the subject but they rejected my request. According to an assistant editor, PPD was well known to Dutch doctors, citing a paper written before the Second World War.  After the publicity they reconsidered, but the first articles reflected the old attitudes and were far from helpful².

VIVA’s** interest began when they received a letter from a reader describing her post partum misery. Their first article offered a range of opinions, and although it included an interview with Dr. Dalton, there was no question of a somatic fixation or the total dismissal of psychosocial factors alluded to by Renckens. Indeed, Dalton (a GP, not a gynaecologist) not only referred to the influence of personality, stress and a previous psychiatric history but also admitted to prescribing antidepressants (VIVA p. 13)³.  Gynaecologist Ernst Loendersloot did not reject psychosocial factors either, which is one reason why he worked alongside a nurse/counsellor (Eileen Hilverink)^{4 5} .

The articles noted how a number of women were admonished for not wanting the child or not loving their partner.  Others were not even recognised as being ill (‘you have a lovely husband and baby, what else do you want?’) and were sent home feeling guilty and ashamed.  One therapist told a patient that her illness was the result of sins committed during a previous life (VIVA  p. 23)⁵.  Those kind of stories were consistent with what I heard as a counsellor and I have no reason to dismiss them as unrepresentative or misleading.

Renckens denies that there was a “lack of professional knowledge” or sympathy at the time.  He not only implies that these women were lying or exaggerating but speculates that some were “profiting from the secondary gains of their diagnosis” (cf. p. 238) or perhaps motivated by financial considerations (cf. three references to compensation p. 237-8).  However, he provided no supportive evidence, at least not relating to women with PPD.

Renckens also claims that “the experts turned directly to the patients without first convincing their colleagues of the value and effectiveness of their treatment”. I concede that the hormonal treatments used by Loendersloot were experimental, but the only reason he failed to provide us with the promised “scientific justification” is because he contracted cancer and died.

I admire Renckens’ loyalty to his colleagues. However, can we not admit to mistakes and learn from them? Why deny what happened? Why trivialise the illness by referring to a ‘contracted habit” and “fashionable disorder illness behaviour”? Why claim that this publicity led to a perpetuation of symptoms, relationship problems and social isolation without citing a single study in support? I don’t recall these outcomes.

I remember the relief on the women’s faces when they realised that this was a relatively common condition and that almost everyone would recover. I recall the positive response from Profs. Kloosterman, Van Hall and  Haspels who invited lecturers, organised conferences and encouraged research.  And I remember general practitioners re-evaluating their attitude to these women and being empowered by the additional information.

The sudden media interest increased awareness and challenged the stigma. Among the ‘new’ cases were women who had suffered in silence, the previously misdiagnosed and those who had not been helped by older treatments and now had a reason to return to their doctors.  This gave the illusion of an outbreak, but it was the result of knowledge, not stress or ‘hysteria’. Moreover, as the media turned their attention to other subjects, PPD didn’t disappear⁶. To my knowledge, no one else has described PPD as an hysterical epidemic, not even Showalter, whom Renckens cites as an expert.

Finally, let me comment on Renckens’ references to the illness ME. This too was ‘discovered’ by VIVA but as with PPD, it was only because efforts to educate colleagues through the usual channels had failed.

To my knowledge, there is no evidence that the majority of these patients suffered as a result of the publicity.  Indeed, follow-up data from the epidemics in New Zealand and America showed significant improvements in more than 70% of those surveyed⁷. So, were those individuals expressing anxiety and stress?

Genuine hysterical outbreaks are usually of short duration, they spread as a result of visual or physical proximity, and most of those affected tend to be young⁸.   ME, which occurs sporadically as well as in clusters, lasts longer and generally affects a wider age group (peak between 35 and 45). More significantly, the incubation time is between 5 and 10 days, the early symptoms are invariably dismissed as a viral infection, and many patients do not know each other.  As for the role of the media, the epidemics during the thirties, forties and fifties occurred well before the illness was named ME, and decades before the first patient group was formed. Until the mid eighties, there was virtually no publicity about this condition and there were no ME specialists to whom patients could turn.   If ME represents “a cultural symptom of anxiety and stress”, then what were these people anxious about in 1934, 1955 and 1970 and 1985? If these individuals needed an excuse to escape, why did they go to such lengths and spend so much money in pursuit of a cure?

I can cite countless studies in medical journals which show that most post-infectious cases have clear evidence of neurological abnormalities and immune activation^{10 11}. I can point out that the prevalence of anxiety disorders is no higher than that documented in cancer or multiple sclerosis and that people with ME respond to their condition using similar coping strategies^{9 12}. However, adherents to the ‘hysteria’ theory will not be satisfied until we have identified a structural lesion or biochemical abnormality in every single patient.  (They may shout about the dangers of Cartesian dualism, but their theories depend on it.) The problem for those of us with a different view is that the definition of CFS does not just cover ME. It selects a number of conditions; hence ‘it’ is unlikely to have a single cause.

In my view, the article by Renckens should not have been published in a reputable medical journal.  We expect scientists to consider all the evidence, not just the findings which support the argument they are trying to advance. Moreover, we expect doctors not to misrepresent an illness, the research of their colleagues or the views of their patients. And there is another issue to consider. If we ‘pick and choose’ evidence in line with a personal or political ideology, if we make unsubstantiated claims about people and events, or if we don’t check that our statements are accurate before publication, can we really criticise those journalists who do the same?

Science demands precision.  We should be making decisions based on reliable information and a discussion of all the relevant arguments.  As individuals we have freedom of speech but as scientists, we don’t have the freedom to mislead.

Yours sincerely,

Ellen Goudsmit PhD C.Psychol. 

*This response was written with a lot of help from friends and colleagues. Thanks to you all.

**VIVA is a Dutch magazine for young women. They published the first article on PPD in the Netherlands.