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Boudewijn Van Houdenhove
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== Criticism == === By researchers === ====Too much stress? ==== Boudewijn Van Houdenhove's approach to ME/CFS has been questioned by researchers and patient advocates. 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: <blockquote> "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."<ref>Komaroff AL. [[pubmed:11126311|The biology of chronic fatigue syndrome]]. Am J Med. 2000 Feb;108(2):169-71.</ref> </blockquote> Neurologist [[Benjamin Natelson]] essentially made the same remark: <blockquote>"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."<ref name=":0">Natelson B. [https://muse.jhu.edu/article/46036 Reply to Dr. Van Houdenhove.] Hum Biol. 2003 Jun;75(3): 413.</ref></blockquote> 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: <blockquote>"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?"<ref>Van Houdenhove B, Vanthuyne S, Neerinckx E. [[pubmed:11023437|Chronic fatigue syndrome.]] Am J Med. 2000 Aug 15;109(3):257-9.</ref></blockquote> ==== Not a sound scientific method ==== Another criticism states that Van Houdenhove uses antidotal evidence rather than research, e.g., using 'the story of the patient' and case examples to put forward his own preconceptions about the illness. As Natelson wrote: <blockquote>"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."<ref name=":0" /></blockquote> [[Frank Twisk|Twisk]] & [[Michael Maes|Maes]] wrote about Van Houdenhove and colleagues: <blockquote>"[…] 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."<ref>Maes M, Twisk FN. Treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a multisystem disease, should target the pathophysiological aberrations (inflammatory and oxidative and nitrosative stress pathways), not the psychosocial "barriers" for a new equilibrium. Patient Educ Couns. 2010 Jul;80(1):148-9; author reply 147. [[doi:]][https://linkinghub.elsevier.com/retrieve/pii/S0738399110000510 10.1016/j.pec.2010.02.017.] [[PubMed Identifier|PMID]] [[pubmed:20303231|20303231]]</ref> </blockquote> ==== Recall and selection bias ==== Natelson also questioned the means by which Van Houdenhove and colleagues profile ME/CFS patients as being perfectionistic, action prone or [[trauma |abused during childhood years]]: <blockquote>"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."<ref name=":0" /> </blockquote> [[Gijs Bleijenberg]] made the argument that Van Houdenhove' method suffers from selection bias: because he is known as a doctor who treats ME/CFS from a psychiatric point of view, he might see more patients with more comorbid psychological problems than are present in the general population. Bleijenberg wrote (Translated from Dutch): <blockquote>"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."<ref name=":22">Bleijenberg G and Van der Meer J.W.M. (1997) [https://www.ntvg.nl/artikelen/moe-met-drie%C3%ABntwintig-oes/ingezonden-mededelingen Onderschrift.]</ref></blockquote> Bleijenberg also criticizes Van Houdenhove for using [[antidepressant]]s in the treatment of ME/CFS, as this is not evidence based.<ref name=":22" /> === By patient advocates === ==== The biological basis of the disease being neglected ==== Though some<ref>Matthyssen K. (2001, March 22). [http://www.gopress.be/Public/bibnet-article.php?issueDate=2001-03-22&publicationId=10&articleOriginalId=degazetvanantwerpenrug365315ed1022032001-00000&language=dut "Waar mogen wij nog rusten?"] Gazet Van Antwerpen. </ref> have emphasized 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): <blockquote>"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."<ref name=":4">Van Houdenhove B. 2001. [https://books.google.be/books?id=eS7ZED-n8AUC&printsec=frontcover&dq=moe+in+tijden+van+stress&hl=nl&sa=X&ved=0ahUKEwjxyPOxpIDcAhULJ1AKHS1TC2wQ6AEIKDAA#v=onepage&q=moe%20in%20tijden%20van%20stress&f=false Moe in tijden van stress. Luisteren naar het chronischevermoeidheidssyndroom.] Tielt: Lannoo, pp 71-72.</ref></blockquote> 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: <blockquote>"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 CFS, 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."<ref name=":9">Wood A. (2002 May 30). Forum: Chronische vermoeidheid. Campuskrant. Retrieved from: https://nieuws.kuleuven.be/nl/campuskrant/0102/13/forum--chronische-vermoeidheid</ref></blockquote> Even those who welcome a more holistic approach to ME/CFS like Stefan Pasture of the [https://sites.google.com/site/cvsevenwicht/ CVS-Society] and [http://www.sonjan.be/lichtwerker/helewaut-marie Marie Helewaut] of patient organization Anamkara<ref>Debusschere B. (2002 April 9). Polarisering onder cvs-patiënten en artsen. De Morgen. Retrieved from: http://www.gopress.be/Public/bibnet-article.php?issueDate=2002-04-09&publicationId=1&articleOriginalId=demorgenpersgroep09-cvskader9042002-00000&language=dut</ref> have criticized Van Houdenhove for treating the disease exclusively from a psychiatric angle. Stefan Pasture for example wrote (translated from Dutch): <blockquote>"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."<ref>Van Houdenhove, B., Luyten P., Vandenberghe, J. (eds). 2010. [https://books.google.be/books?id=Faj8ZwEACAAJ&dq=luisteren+naar+het+lichaam+het+dualisme+voorbij&hl=nl&sa=X&ved=0ahUKEwjt4KzspoDcAhXMaVAKHQhiCHYQ6AEIKDAA Luisteren naar het lichaam. Het dualisme voorbij.] Tielt: Lannoo.</ref></blockquote> ====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.<ref>De zevende dag. VRT. 05-03-2006. Retrieved from: https://www.youtube.com/watch?v=neaNUwqLsoc</ref> 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.<ref name=":5">Van Impe M. (2012 March 16). Een aangekondigde mislukking waarbij we ons moesten neerleggen. Retrieved from: http://www.cvsmeliga.be/home/over-cvs-me/referentiecentra-cognitieve-gedragstherapie/een-aangekondigde-mislukking-waarbij-we-ons-moesten-neerleggen</ref> 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.<ref name=":5" /><ref>Van Houdenhove B. redactioneel. [http://www.tijdschriftvoorpsychiatrie.nl/assets/articles/articles_391pdf.pdf Uitdagingen van het chronischevermoeidheidssyndroom]. Tijdschrift voor psychiatrie 42 (2000) 11: 791-792.</ref> Van Houdenhove has often been criticized by patients on the online information website [https://www.me-gids.net/index.html ME-Gids.net.] One patient, named Marlène, wrote him an open letter stating (translated from Dutch): <blockquote>"I hope that you will devote your energy […] to treating people with trauma's, 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."<ref name=":8">https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-736.html</ref></blockquote> More recently, [http://www.wakeupcallbeweging.be/ 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 (translated from Dutch): <blockquote>"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.”<ref name=":10">De Bock G. (2018 may 5). Retrieved from: https://www.facebook.com/Wake-Up-Call-Beweging-action-group-for-MEcfs-fibromyalgia-sufferers-202494729818299/</ref> </blockquote> === Controversy === ==== Membership of a patient organization as an illness-perpetuating factor ==== Boudewijn Van Houdenhove has responded to criticism by patient advocates. In his book ‘[https://books.google.be/books?id=eS7ZED-n8AUC&printsec=frontcover&dq=moe+in+tijden+van+stress&hl=nl&sa=X&ved=0ahUKEwjh4N3Lq4DcAhVDLlAKHd_TDXYQ6AEIKDAA#v=onepage&q=moe%20in%20tijden%20van%20stress&f=false Moe in tijden van stress’ (2001)] he wrote that he felt "surprise, pity and vicarious shame" as he read criticism of patients on the internet. In another of his books, [https://books.google.be/books?id=yDauPwAACAAJ&dq=%E2%80%98Herwin+je+veerkracht%E2%80%99+(2009)&hl=nl&sa=X&ved=0ahUKEwjGw-rbq4DcAhUFYlAKHTDuBYEQ6AEIKDAA ‘Herwin je veerkracht’ (2009)] he referred to the website of patient advocate (and published researcher) [[Frank Twisk]] with the remark (translated from Dutch) “It is suffice to say that most of them do not bother to read what I write […] They just echo each other's prejudices.” And concerning the protest of some ME/CFS patients against a psychiatric approach to their illness, Van Houdenhove noted (translated from Dutch): <blockquote>"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."<ref>Neerinckx E and Van Houdenhove B. [http://www.tijdschriftvoorpsychiatrie.nl/assets/articles/articles_599pdf.pdf Kort signalement Gegijzeld door chronische vermoeidheid...] Tijdschrift voor Psychiatrie 39 (1997) 4: 339-341.</ref> </blockquote>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.<ref>Van Houdenhove B and Luyten P. Customizing treatment of chronic fatigue syndrome and fibromyalgia: the role of perpetuating factors. Psychosomatics. 2008 Nov-Dec;49(6):470-7. [[doi:]][https://doi.org/10.1176/appi.psy.49.6.470 10.1176/appi.psy.49.6.470] [[PubMed Identifier|PMID]] [[pubmed:19122123|19122123]]</ref> ==== Recovery is an undesirable goal ==== Another controversial statement Van Houdenhove has made, is that for ME/CFS patients, full recovery is not only an unrealistic but also an undesirable goal.<ref name=":13" /> 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): <blockquote>"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..."<ref name=":7">Van Houdenhove, B. (2005). [https://books.google.be/books?id=xuQONxCnpIgC&pg=PA13&dq=in+wankel+evenwicht+boudewijn+van+houdenhove&hl=nl&sa=X&ved=0ahUKEwjgtMv-qYDcAhUJPFAKHb5qBl0Q6AEIKDAA#v=onepage&q=in%20wankel%20evenwicht%20boudewijn%20van%20houdenhove&f=false In wankel evenwicht. Over stress, levensstijl, en welvaartsziekten.] Tielt: Lannoo. p 139-140.</ref> </blockquote> According to Van Houdenhove some ME/CFS patients were "trapped in a narcissistic urge to perform" while others were "a slave of their perfectionism".<ref name=":7" /> This is the reason why there will never be a simple pharmacological cure for ME/CFS. (Translated fom Dutch): <blockquote>"[…], 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."<ref>Van Houdenhove B, Luyten P, ke S. [https://www.tvg.be/index.php/article/het-stressadaptatiemodelvan-het-chronischevermoeidheidssyndroomfibromyalgieeen-update Het “stressadaptatiemodel” van het chronischevermoeidheidssyndroom/Fibromyalgie: een update.] Tijdschrift Voor Geneeskunde. 2013;69: 905.</ref></blockquote> ==== 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."<ref>VandelooD. (1997 June 3) Psychosomatische afdelingen luiden nieuw tijdperk van hulpverlening in – “Patiënt moet stoppen met dokter-shopping”. Het Belang van Limburg. Retrieved fom: http://www.gopress.be/Public/bibnet-article.php?issueDate=1997-06-03&publicationId=18&articleOriginalId=hetbelangvanlimburgrug902893061997-00000&language=dut</ref>According to Van Houdenhove, ME/CFS patients “can best be helped by helping themselves.”<ref name=":4" /> ==== 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.<ref name=":3" /> 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: <blockquote> "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."<ref>Van Houdenhove B. (1998 October 25). Chronischvermoeidheidssyndroom erkennen? De Standaard. Retrieved from: http://www.gopress.be/Public/bibnet-article.php?issueDate=1999-10-25&publicationId=2&articleOriginalId=destandaardvumcuscusds25101999-00000&language=dut</ref> </blockquote> 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."<ref name=":2" />
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