Thursday, March 24, 2011
Open Letter by an ME/CFS patient to Dr. Em. B. Van Houdenhove
Open Letter by an ME/CFS patient to Dr. Em. B. Van Houdenhove
The following Open Letter was written by an ME/CFS patient, who came upon “her story” in Professsor B. Van Houdenhove’s book ‘Moe in tijden van stress’ (Tired in Times of Stress). Her consent was never sought and she was not aware of its publication. She had told her story on an internet site, and based solely on this information, Professor Van Houdenhove made a complete analysis, and even a diagnosis, of the patient. Is this the scientific way?
Open Letter to Professor Van Houdenhove, in response to his book ‘Moe in tijden van stress’ (Tired in Times of Stress)
April 12th 2002
The ‘All in the Mind’ Maffia, Charlatanism and the Placebo Effect
How they maintain their power:
Excerpt from ‘Moe in tijden van stress’ (Tired in Times of Stress), Chapter on ‘Internet campaigners’, by Professor van Houdenhove:
AND BY SURFING THE NET
‘I recently retrieved from the internet the story of a woman named Tina, who appears to be suffering from CFS/Fibromyalgia, as well as Sudeck’s Syndrome. Indeed, as I have repeatedly found in my clinical practice, different stress related conditions can occur simultaneously in one and the same patient. I am reproducing the main gist of the text. It is the poignant story of someone who justifiably struggles for acknowledgement of her suffering, but cannot detach herself from the role of victim...’
Dear Professor Van Houdenhove,
I recently read your book ‘Moe in tijden van stress’. I am the patient to whom you refer in Chapter 6: ‘Internet Campaigners’, p 77.
For a start, may I point out that you have - without my knowledge or consent - taken text passages from my life story and subsequently made a diagnosis, without ever having spoken to me, let alone consulted my medical file. This, Sir, is not an acceptable way of dealing with a patient. Even if your actions were within the law (which is debatable), you are far from being ethically correct. If this is the way you proceeded with the 2000 other patients you ‘heard’, I begin to wonder about the value of your scientific research.
First of all, please note that the text, which was written in emotional terms, describes but a momentary reflection of my life, and does not enable you to assess me as a complete human being. In my opinion, your diagnosis of ‘psychosomatic CFS/Sudeck’s Atrophy‘ can only be made after thorough, in depth interaction with the patient.
Secondly, you quoted the story out of context, leaving out the environmental and social factors which caused my condition to spiral downwards. By ignoring (and playing down ) the social context, you exacerbate the environmental and psychological burden weighing on the patient, and you mix up cause and effect. Because society at large embraces your perception, patients are faced with an even greater lack of understanding. In this way, you yourself are contributing to a vicious circle of psychological and somatic problems.
Thirdly, I am not fighting for acknowledgement of ‘my suffering’, but for the opportunity to exercise my rights, in the only way that remains open to me, after having unsuccesfully pursued all social and judicial possibilities. My complaint is about denial of my rights and the shortcomings of our social system, which I am trying to bring to light. I am quite within my RIGHTS to do so.
Far be it from me to deny that CFS can cause psychological problems, on the contrary. For this reason, I have always been willing to scrutinise my own ‘attitudes’. I even sought help from a psychologist, in order to revise them where necessary. This has made me into an emotionally strong woman, and has taught me to deal with adversity, and act where necessary and/or possible. To this extent, it is possible to take one’s life in one’s own hands and make adjustments.
However, these changed ‘attitudes’ do not weigh in the balance when it comes to socio-economic considerations, or with regard to (physical) health. The only means of control one has over these two aspects is to take care of oneself, and to make oneself heard when medical, societal and social factors make self care difficult. This is what my website is all about.
Disease, or a serious condition, can lead to a downward spiral for those who go through a prolonged period of illness during childhood or adolescence. The reduced school attendance due to illness, and the limited possibilities which society offers to compensate for this loss, can diminish a person’s chances of completing an education, and jeopardise one’s socio-economic position in adulthood. This in turn can limit the number and type of occupations an individual can choose from, so that he/she is exposed to heavier physical burdens and, because of illness, becomes unable to exercise his/her occupation .
Exclusion from the labour market due to incapacity leads to a drop in income, while at the same time expenses increase. Many patients end up being unable to meet the costs of their care and basic needs. The disease is worsened by stress due to social exclusion. This in turn leads to less support, attention and opportunities for recreation, study and so on being given to the children, so that when they are grown, they are in danger of going down the same spiral of disease and poverty. Disease and poverty therefore leave their mark on the next generation.
Sir, the degree to which health directly or indirectly influences ‘social mobility’ does not depend solely on ‘personal’ characteristics, but is influenced as much (if not more) by the availability of social amenities, which may differ according to country, region, city or municipality. Thus, psychosocial/long term stress factors can in part be the cause of existing differences in health. People with a lower socio-economic status can indeed be subject to more strenuous circumstances. However, this is true for all diseases, not only for Sudeck’s Atrophy, CFS, fibromyalgia, whiplash etc. In your books and publications, you repeatedly refer to people suffering from these conditions as ‘ill without illness’. Behavioural and material/social factors cannot be divorced from each other. To a great extent, ‘behavioural factors’ are part and parcel of one’s living circumstances. Unhealthy eating habits, neglect of medical care and lack of recreational opportunities are primarily determined by a person’s financial situation and not by ‘attitudes’. Disease and subsequent financial hardship, exacerbated by restricted circumstances, lead to a much less favourable situation in life than that enjoyed by healthy persons or diseased persons with sufficient financial means. In order to turn the situation round into an upward spiral, Cognitive Behavioural Therapy (CBT) will not suffice. Societal shortcomings will also have to be addressed. This will not be done with CBT, but by socio-political commitment.
A change in society’s outlook will be necessary, and some thought must be given to all embracing holistic health care, for disabilities as well as biomedical and psychological illness. Here again, the onus is not solely on patients, but especially on those in power, who need to approve national and regional programmes, and on health insurance funds who must encourage them to do so and provide the necessary insurance. This needs to be backed up, in theory but also in practice, by politicians, physicians and medical students, magistrates, caregivers and citizens at large. Legislation on paper and one dimensional therapies such as CBT are of no use to us at all, they just cause more stress and lack of understanding. Phrases such as ‘ill equiped to deal with stress factors’, ‘all in the mind’, ‘living within one’s means’, ‘unacknowledged depression’, ‘negative cognitions and belief systems’, ‘frustrated will’ and ‘victimhood’ can sound extremely patronising and arrogant to patients. They also show that one has not been properly heard. I certainly do not feel that you, Mr. Van Houdenhove, have ‘heard’ my story properly and thoughtfully; it seems to me you have twisted it to suit your own convictions.
There is long standing scientific evidence that ‘disease can lead to poverty’ and conversely, that ‘poverty can lead to disease’. In spite of this proof, and contrary to wat one might expect from today’s welfare state, the welfare gap in society is widening rather than narrowing. I therefore hope that society and its physicians, caregivers and political powers that be, will not only recognise CFS, but will also consider the psychosocial problems the disease entails. I would like them to address these issues and provide for them in their policies. This should be done in an appropriate context, not along the perverted line of reasoning you tend to favour, which lays the cause of the disease with the patient’s ‘attitudes’.
In your book, there are some substantial contradictions.
I quite understand that it is always a personal responsibility not to overtax oneself. However, you point out that a difficult life history and prolonged stress disrupt the body’s neurobiology (e.g. the HPA-as and cortisol mechanism), which is what you tell your patients, while on the other hand you claim they need to ‘give up their somatic attributions’ in order to improve their health. Are you saying that these somatic attributions have suddenly sprung from the patient’s morbid imagination? People whom disease and (disease induced) stress have sent into ‘overdrive’ are being blamed for their own condition. Small wonder that there is so much opposition.
Another significant contradiction: your book describes certain social causes for disease (Chapter 4: ‘Is Pinochet chronically fatigued?’), but pays no attention to treatment or social remedies. These social stress factors are systematically overlooked! A treatment plan does contain a ‘social’ component (there is now a multifunctional approach), but for many patients the pressure on their already fragile constitution is removed far too late, or not at all, because of social and societal circumstances.
A number of social, psychological and medical factors are mentioned in your book, but in contradiction, patients’ treatment is modelled on “personal liability” (you called them ‘aggressors to themselves’). The patient should detach from medical and social attributions and realise that ‘he can be cured only by himself’. This discrepancy between the cause (the disruption of the body’s neurobbiology -e.g. the HPA-as and cortisol mechanism-) and the remedy (Cognitive ‘Behavioural’ Therapy) is precisely what keeps fanning the flames of opposition between believers and non beievers.
Then there is the moot question whether, from a psychological point of view, patients with CFS/Sudeck’s Syndrome, fibromyalgia, whiplash etc. (who, you claim, have control-freaked themselves and their environment into a situation of extreme stress), are best served with a treatment based on self control. A rehabilitation programme based on the illusion that one can gain total psychological control by denying all medical aspects, will not lead to physical improvement and will undermine the patients’ self confidence.
A rehabilitation programme which teaches the patient to listen to the body’s signals, to accept and accomodate one’s disability, and to be articulate and assertive towards one’s environment, can be a useful tool, provided there is sufficient social support.
I’m afraid that psychotherapy, relaxation exercises, physiotherapy, stretching and teaching social skills will not do, and will hardly change our physical and social circumstances.
Sir, you might see this as ‘victimhood’, (see Chapter on ‘Internet Campaigners’, p. 77), but I will not give up the only form of social participation still available to me, on the contrary.
Dutch version: http://www.facebook.com/note.php?saved&¬e_id=126475324068131