Boudewijn Van Houdenhove

Introduction:
Boudewijn Van Houdenhove is a retired Belgian professor of psychiatry at the University of Leuven. During his career he took a special interest in chronic fatigue syndrome (CFS) and fibromyalgia (FM), which he considers to be both stress-related psychosomatic disorders. According to Van Houdenhove CFS is characterized by a long period of stress and overactivity which leads to a crash of the hypothalamus-pituitary-adrenal (HPA) axis and a subsequent lack of resilience. Though Van Houdenhove is considered to be one of the most influential voices in the debate on ME/CFS in Belgium, his views have been consistently criticized by patients for ‘blaming the victim’ and relying too heavily on psychosocial factors.

Liaison psychiatry
Boudewijn van Houdenhove was a forerunner of psychosomatic medicine in Belgium in the 1980s and 1990s. As a liaison psychiatrist he specialized in the interface between general medicine and psychiatry. Early in his career, however, he realized that the role of psychiatrists could be more than consultative. Because chronic pain patients needed a more complex multidisciplinary approach, he understood psychiatrists could play an important role as a coordinator in offering this holistic approach. As Van Houdenhove wrote (translated from Dutch):

"'Liaison psychiatrists can 'emancipate' themselves in this way by stepping out of their - often frustrating, because purely advisory - role and putting into practice their own biopsychosocial diagnostic and therapeutic policy.'"

Inspired by the work of Freud and Lacan, Van Houdenhove started studying patients with unexplained chronic pain from a psychodynamic point of view. His impression was that these patients premorbid life history is characterized by hyperactivity. He speculates this to be "symptomatic of underlying, frequently interrelated psychodynamic factors, such as unfulfilled (but overcompensated) dependency needs, excessive bodily narcissism, ‘phallic’ rivalry (in women patients) and masochistic or obsessional traits."

Complex regional pain syndrome
An unexplained disorder Van Houdenhove focused on at the time was reflex sympathetic dystrophy (RSD) also known as complex regional pain syndrome (CRPS). In these patients a portion of the body (an arm, hand, leg or foot) becomes chronically impaired, usually after an injury. The cause remains unknown to this day. Back in the early 1990s Van Houdenhove emphasized the psychosocial elements that come into play in CRPS and controversially claimed these to be not only perpetuating but also precipitating factors:

"'Our basic assumption is that patients suffering from RSD are at the time of the physical trauma confronted with a dramatic psychological situation that they experience as an existential loss i.e. a loss that fundamentally threatens an important life perspective with which they cannot adequately cope. […] More specifically the patient’s reaction to loss appears to be characterized by helplessness, i.e. a set of cognitive motivational and emotional deficits usually resulting from chronic uncontrollable stress and leading to passive withdrawal, decrease of self-esteem anxiety and depression as well neuroendocrine and autonomic nervous system changes.'"

Van Houdenhove also speculated this maladaptive coping reaction was related to certain personality traits like narcissism and hysteria. Although his theory was highly criticized at the time, many aspects of it would return in his view on chronic fatigue syndrome. In 2003 for example Van Houdenhove wrote:

"'The evidence for a relationship between chronic fatigue syndrome/fibromyalgia and complex regional pain syndrome type I remains preliminary but deserves further research. […] In the three disorders, symptoms and disability may be perpetuated by similar factors, such as disturbed sleep, comorbid anxiety and depression, and activity avoidance, resulting in physical deconditioning.'"

"Ill without a disease"
In the 1990s Van Houdenhove expanded his expertise to chronic fatigue syndrome, a disorder in which he saw many similarities with the chronic pain patients he was treating. In his first book about the issue, he named ME/CFS "the psychosomatic disease of our time" and claimed ME/CFS patients were "ill without a disease". Van Houdenhove also told parliamentarians that this was a disease, “ideally suited to rehabilitation". As reporting member for the ‘treatment working group’ of the Superior Health Council in 2001, he played a vital role in implementing cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as the state-sponsored treatments for ME/CFS in Belgium. When these therapies failed to show meaningful results, Van Houdenhove admitted his initial views to be erroneous and too simplistic (translated from Dutch):

"'When I started to see patients with chronic fatigue symptoms in the early 1990s, I was initially a non-believer. It was hard for me to imagine that the exhaustion of these patients could be so dramatic. Perhaps they - like many chronic pain patients with whom I had some experience - had become abnormally tired because of the deterioration of their physical condition. I thought practicing a lot would help them to get over it. But in the course of time I went through a metamorphosis. I became a believer. I remember that this change of attitude was encouraged by the contact I had with some patients who had previously been passionate about sports. In their case, there was absolutely no question of severe deconditioning. Nonetheless, they were unable to perform normal efforts and complained of a feeling of sickness, if they tried to force themselves.'"

The swith hypothesis
Van Houdenhove now believes effort intolerance to be the main characteristic of ME/CFS. He thinks this is caused by a dysregulation of the stress system. When a normal person experiences acute stress, the HPA axis gets activated and the body produces hormones like cortisol to instigate a state of arousal. When this state persists for too long and stress becomes chronic, Van Houdenhove speculates this to result in a crash after which the body is no longer able to produce enough cortisol, as is often seen in ME/CFS patients. Because cortisol has immunosuppressive properties, this switch from HPA axis hyper- to hypofunction is accompanied by an overactivation of the immune system and excessive production of cytokines. According to Van Houdenhove, this induces sickness behavior that could account for the fatigue experienced by ME/CFS patients. The final result is a lack of resilience, which he sees as the main characteristic of ME/CFS.

Perfectionism and overactivity
According to Van Houdenhove ME/CFS patients partly create their own stress, for example by being too perfectionistic. In his first major study into the disease, he showed that ME/CVS patients were more ‘action-prone’ than controls. In other words, these patients weren’t lazy or too sedentary as is sometimes claimed by proponents of the deconditioning-hypothesis; instead they were overactive. They showed the same ‘ergomania’ Van Houdenhove had previously seen in his unexplained chronic pain patients.

Victimization
The next question he decided to answer was why ME/CFS patients were in such a continuous state of overdrive before falling ill? According to Van Houdenhove this febrile behavior acted as a "stabilizing factor in the psychic economy".

"'In our clinical practice, we often hear from CFS/FM patients that—before they got ill—they never could sit still, they were always busy to avoid becoming nervous, or they needed physical workout to chase away negative thoughts or feelings.'"

In another study by Van Houdenhove and colleagues, ME/CFS patients reported more emotional and physical abuse than controls with multiple sclerosis or rheumatoid arthritis. A considerable subgroup experienced lifelong victimization. According to Van Houdenhove this explains why ME/CFS patients are often perfectionistic and in need of external validation.

"'This case report illustrates the multifactorial etiology of CFS. Mr. A’s severe abuse history and his premorbid overactive lifestyle may be considered important vulnerability factors. Based on a deep-rooted lack of self-esteem, this man was driven to work hard and take part in sports to a fanatic degree (bodybuilding and karate) as a means of compensation for feelings of emptiness, worthlessness, and insufficiency.'"

When their outlet of overactivity becomes hampered, persons like Mr. A are susceptible to developing ME/CFS:

"'What happens, then, when a protracted illness or physical injury makes further (over)activity impossible? Such events may seriously threaten the patient’s psychobiological equilibrium and precipitate a dysregulation of the stress system.'"

A lumper standpoint
According to Houdenhove this mechanism is not unique to ME/CVS. Low cortisol levels for example have also been reported in other stress-related disorders like atypical depression, fibromyalgia, post-traumatic stress disorder and burn-out. He sees a lot of similarity between these conditions, stating for example:

"'Could it be that the over-ambitious athlete complains about 'overtraining', the over-committed social worker about 'burnout', and the over-burdened modern woman who feels obliged to combine three 'fulltime' jobs (household, professional career and educator of children).., about ME?'"

Van Houdenhove confesses that he is a lumper, not a splitter i.e. he thinks fibromyalgia (FM) and ME/CFS should be regarded and treated as one disease. In line with Simon Wessely he thinks the splitting of many so called functional somatic syndromes represents an artifact of specialized modern medicine. In 2007 he proposed to rename FM and ME/CFS into "stress intolerance and pain hypersensitivity (SIPH) syndromes".

ME/CFS; a symptom of a sick society?
Inspired by historian Edward Shorter, Van Houdenhove also emphasizes how culture shapes the way we define illnesses. For example, in a letter to The Lancet, he explained the curious situation in his home country, Belgium:

"'French-speaking Belgian colleagues have repeatedly confirmed that the chronic fatigue syndrome (CFS) has not yet become a hyped illness, as it is in Flanders (as well as in the Netherlands and the UK). In Flanders, for example, there are currently four CFS/ME self-help groups, whereas none exists in Wallonia. The Flemish press, has regularly reported the disorder for 10 years (eg, describing patients’ experiences about disbelief and incomprehension, or about so-called research breakthroughs), but the Walloon press has shown interest only in the past few years. Walloons are more oriented— culturally as well as scientifically—to France, whereas Flemish people are on the same wavelength as countries with Anglo-Saxon culture and science. Consequently, Walloon and Flemish patients and doctors use different labels to communicate about distress and ill health.'"

Furthermore Van Houdenhove speculates the prevalence of ME/CVS to be on the rise because of consumerism and the high social demands modern society places on the individual. In this respect he ponders if ME/CFS should be regarded as a "symptom of a sick society".

Listening to the story of the patient
According to Van Houdenhove the whole controversy around ME/CFS can be explained by doctors and researchers not listening to the story of the patient. If they did, they would know that this isn’t merely a matter of deconditioning and unhelpful cognitions. Only if one listens closely to the life history of patients, is it possible to grasp the many complex dimensions this illness has. Psychologists who rely solely on questionnaires will often miss the underlying factors (childhood abuse, maladaptive perfectionism, overactivity etc.) that help explain why a person got ill. According to Van Houdenhove this is the main reason why the effectiveness of CBT in ME/CFS has been so disappointing. Therapists should expand their scope:

"'[…] when the patient’s story is left out of the therapeutic project, the risk of nonresponse or relapse might be substantial as soon as he or she is confronted with unresolved intrapsychic conflicts or ongoing psychosocial (e.g. interpersonal) problems. This surely does not imply that all CFS patients should engage in formal psychodynamic or interpersonal therapy. It does, however, suggest that cognitive – behavioural therapists should— besides their traditional focus on illness maintaining and reinforcing factors— broaden their scope to include predisposing and initiating psychosocial factors as well.'"

Adaptation instead of recovery
When analyzing the results of the multidisciplinary center for CFS at the University of Leuven, Van Houdenhove and colleagues found that among all factors of the cognitive-behavioral model, only severity of depression before treatment was significantly associated with post-treatment fatigue. As Van Houdenhove noticed, this wasn’t the only time findings contradicted the CBT-paradigm:

"'…in CBT-oriented literature concerned with CFS, different treatment goals can be discerned. Some authors suggest that the therapist should mainly incite patients to diminish their somatic focus and correct inappropriate physical attributions. However, the usefulness of this goal is doubtful since the majority of patients with CFS and the largely overlapping fibromyalgia syndrome (FM) seems to accept a combined psychological/somatic causation of their illness. According to other authors, the therapist should in the first place tackle the patients’ activity avoidance or irregular activity patterns (outburst of activity followed by prolonged periods of rest), and stimulate them to engage in a graded exercise program in order to fight physical deconditioning. However, most CFS patients do not show kinesiophobia and loss of exercise capacity does not seem to play a major role in the pathophysiology of CFS.'"

Van Houdenhove criticizes his Dutch colleague Gijs Bleijenberg for arguing that full recovery should be the main goal of CBT. As Van Houdenhove has seen over the years in his clinic, this is not a realistic objective. Instead he suggests clinicians should recognize the lasting vulnerability of ME/CFS patients. He advises ME/CFS patients that:

"'…they should accept their ailment and functional limitations and work through the painful grieving process resulting from the fact that CFS means giving up many important things in life. Second, they should realistically adapt to their effort intolerance by learning to carefully pace activities in order to avoid post-exertional malaise reflecting abnormal immune activation. In many patients, this implies abandoning their previous ‘overactive’ lifestyles, which may be rooted in narcissistic, perfectionistic or counter-dependent tendencies.'"

Despite these criticisms, Van Houdenhove continues to promote GET and CBT as an essential part of the treatment of ME/CFS patients.

Too much stress?
Boudewijn Van Houdenhoves approach to ME/CFS has been repeatedly questioned by researchers and patient advocates alike. A recurring criticism is that his emphasis on stress in the etiopathogenesis of ME/CFS is not supported by sufficient evidence. Harvard professor and renowned ME/CFS expert Anthony Komaroff for example commented:

"'Van Houdenhove and colleagues would have to concede, however, that many patients with chronic fatigue syndrome do not report unusual stressors in the months before the onset of their illness and do not have evidence of hypothalamic dysfunction. Available data do not support the hypothesis that stress leading to hypothalamic dysfunction explains all cases of chronic fatigue syndrome. It must be more complicated than that.'"

Neurologist Benjamin Natelson essentially made the same remark:

"'While we also occasionally find patients whose history of fatigue precedes their getting a flu-like illness from which they are unable to recover, our own careful approach certainly does find appreciable numbers of patients who were perfectly well until succumbing to a sudden flu-like illness.'"

Others pointed out that even if stress is a factor in the development of ME/CFS, this doesn’t necessary mean much, since stress plays a role in almost every disease. As the De Meirleir & De Becker wrote:

"'It is clear that stress can influence the course of disease adversely as in cancer for example but do we treat stress instead of the biological correlates in cancer patients?'"

Not a sound scientific method
Another criticism states that Van Houdenhove uses ‘the story of the patient’ to put forward his own preconceptions about the illness. In other words referring to self-selected case examples to back up one’s own theory about ME/CFS is not a sound scientific method. As Natelson wrote:

"'While we as clinicians depend heavily on narration to inform us about the patient and the patient’s illness story, we believe that the evidence-based approach is the only way the medical field can solve the problem of illness cause.'"

Twisk & Maes wrote about Van Houdenhove and colleagues:

"'[…] the authors neglect the fact that there is a considerable gap between their philosophical point of view which they erroneously call evidence-based and numerous scientific papers which show that ME/CFS is a medical disorder with a biological pathophysiology.'"

Recall and selection bias
Natelson also questioned the means by which Van Houdenhove profiles ME/CFS patients as being perfectionistic, action prone or abused during childhood years:

"'Self-reported data are open to substantial recall bias. For example, a number of studies have linked abuse in childhood as reported to have occurred by adults with fibromyalgia( e.g. Walker et al. 1997). However Raphael et al.(2000) have recently shown that rates of widespread pain do not differ in people with documented abuse in childhood compared to nonabused samples.'"

Gijs Bleijenberg made the argument that Van Houdenhoves method suffers from selection bias: because he is known as a doctor who treats ME/CFS from a psychiatric point of view, naturally he will see more patients with more comorbid psychological problems than are present in the general population. (Translated from Dutch):

"'The percentage of patients with psychopathological problems underlying or related to CFS complaints reported by them – 75% -, is very different from the percentages mentioned in the literature. […] We know from presentations at conferences that other CFS patients end up in the group of Van Houdenhove et al. than for example, in Nijmegen. The average scores in research with questionnaires for psychological or psychopathological problems are considerably higher in his group; they are comparable to scores of psychiatric patients. The scores in our group are comparable to those of other patients who visit the hospital because of physical complaints. If the patients of Van Houdenhove et al. were to be compared to a control group with equal scores for psychological or psychopathological problems, it would almost certainly be concluded that the presence of traumatic childhood experiences is not characteristic for patients with CFS.'"

Bleijenberg also criticizes Van Houdenhove for using antidepressants in the treatment of ME/CFS, as this is not evidence based.

The biological basis of the disease being neglected
Though some have argued that Van Houdenhove treated his patients with empathy and compassion, most patient organizations and advocates in Belgium have criticized his approach to ME/CFS. In the 1990s members of patient group ‘Samen Sterk’ wrote that (translated from Dutch):

"'Although Professor van Houdenhove is apparently concerned about CFS patients, one increasingly gets the feeling that his interviews in the popular press are an advertising stunt for his field of expertise and the psychosomatic rehabilitation department of the UZ Pellenberg.'"

In 2002 patient advocate and published researcher Anna Wood decried the fact Van Houdenhove was appointed to lead the ME/CFS reference center at the University of Leuven:

"'How unfortunate that professor Boudewijn Van Houdenhove is linked to the K.U. Leuven that he gets publicity rather than someone else.[…] With the gross imbalance of research efforts and money being out into the psychological side of CVS, patients with this disease will have to wait extra-long before there is any progress into understanding the processes, finding the cause and ultimately a cure for their disease.'"

Even those who welcome a psychiatric approach to ME/CFS like Marie Helewaut of patient organization Anamkara have criticized Van Houdenhove for solely approaching the disease from this angle. Stefan Pasture of the CVS society wrote:

"'One of the few who can express how CFS patients feel is Prof. Van Houdenhove. But that's precisely why I don't understand why his ME/CFS reference centre pays so little attention to the physical side of the disease. Van Houdenhove does refer to neurobiological dysfunctions in his book, but the reference centre does no attempt to map them out. Of course, acceptance of the disease and learning how to deal with it are crucial. However, this must not result in the biological basis of the disease being neglected.'"

A narrative of ME/CFS that conflicts with how patients experience it
In a notable television debate in 2006, Van Houdenhove was heavily criticized by ME/CFS patient and former singer/radio host Luk Saffloer for constructing a narrative of ME/CFS that conflicts with how most patients experience it.

Medical journalist and patient advocate Marc van Impe noted that Van Houdenhove rarely shows up at international conferences of ME/CFS and that he prefers to philosophize instead of conducting proper research into the disease. Van Impe also criticizes Van Houdenhove for writing in reports for insurance companies that there is no organic basis for the diagnosis of ME/CFS.

Furthermore Van Houdenhove has often been criticized by patients on the online information website ME-Gids.net. One patient, named Marlène, wrote him an open letter stating:

"'I hope that you will devote your energy […] to treating people with traumas, fears and so on and leave people like us, who are ill [with a neurological disease much like] MS or Parkinson’s, alone. Stick to your expertise. And if you really want to get involved in ME/CFS, then listen to patients instead of imposing your opinion on them.'"

More recently, The Wake up call beweging has criticized Van Houdenhove for downplaying the value of biomedical research into ME/CFS. Gunther De Bock for example wrote:

"'The articles in which BvH [Boudewijn Van Houdenhove] is involved are always drawn up according to a recurring pattern in which he (1) questions the credibility of biomedical researchers, (2) weakens the scientific value of biomedical findings,(3) portrays the criticism of patients as fanatical and/or negligible, (4) highlights the psychosocial causes of CFS, (5) addresses usefulness of CBT and GET, (6) portrays other treatments as dangerous or a scam, (7) emphasizes that there is no diagnostic marker (8) that only the biopsychosocial model is evidence based (9) and that there is and will not be a pill that cures ME/CFS.”"

Membership of a patient organization as an illness-perpetuating factor
Boudewijn Van Houdenhove has not always responded well to criticism of patient advocates. In his book ‘Moe in tijden van stress’ (2001) he wrote that he felt "surprise, pity and vicarious shame" as he read criticism of patients on the net. In another of his books, ‘Herwin je veerkracht’(2009) he referred to the website of patient advocate (and published researcher) Frank Twisk with the remark (translated from Dutch) “Let me suffice to say that most of them do not bother to read what I write […] They just echo each other's prejudices.” In a 2008 scientific paper on the treatment of ME/CFS, Van Houdenhove wrote that membership of a patient support group could be regarded as a perpetuating factor of the disease. And concerning the protest of some ME/CFS patients against a psychiatric approach to their illness, Van Houdenhove made the rather scornful remark (translated from Dutch):

"'The stubbornness with which this happens in some patients sometimes prompts us to think that, if the energy wasted in this fight were used to work on rehabilitation, the process of recovery would probably have come a long way.'"

Recovery is an undesirable goal
Another controversial remark Van Houdenhove made, is that for ME/CFS patients, full recovery is not only an unrealistic but also an undesirable goal. This has to do with Van Houdenhoves view that the premorbid behavior of ME/CFS patients is an important precipitating factor of the disease (translated from Dutch):

"'Elsewhere we have argued that in many CFS/FM patients - before the outbreak of their disease - the balance between their will and ability had become lost. They perpetrated continuous violence against themselves, whether intentionally or unintentionally. This imbalance was a source of chronic, undermining stress. Sooner or later this had to go wrong...'"

According to Van Houdenhove some ME/CFS patients were "trapped in a narcissistic urge to perform" while others were "a slave of their perfectionism". This is the reason why there will never be a simple pharmacological cure for ME/CFS. (Translated fom Dutch):

"'[…], it seems unlikely that CFS/fibromyalgia can be 'cured' completely by pharmacological therapy. Indeed, as discussed above, the course of the condition often depends heavily on secondary physical and psychosocial factors. For many patients with CFS/fibromyalgia, a return to 'former times' is an entirely undesirable goal, given the factors that contributed to the disease.'"

Patients should help themselves
At Van Houdenhoves clinic, the ME/CFS patient was encouraged to be more self-sufficient. (Translated fom Dutch) "We tell him that he must stop expecting medicine to solve everything, that he must stop doctor-shopping." According to Van Houdenhove ME/CFS patients “can best be helped by helping themselves.”

ME should not be a condemnation of disability
Another controversial intervention by Van Houdenhove occurred at the turning of the millennium when Belgian ME/CFS patients, through lobbying and protests, just about managed to have their disease recognized by the government. At the time, Van Houdenhove published an article, cautioning about these developments. Though he stressed that the ‘illness’ of these patients (by which he means the subjective feeling of being sick) should always be respected by physicians and society, recognition of an official disease and disability is a more complicated matter. He published an opinion piece in the Belgian newspaper, De Standaard, stating:

"'Recognition of the authentic feeling of illness and inability of the CFS patient certainly does not have to result in long-term or permanent disability. After all, in many cases the GP can intervene in a timely and adequate manner in order to prevent the patient from falling into a downward spiral.'"

According to Van Houdenhove "labels such as CFS and ME should be used in a constructive way, not as a condemnation of disability, but as a point of departure for realistic and pragmatic help."