Journal of IiME Volume 2 Issue 1 www.investinme.org ME News from Around Europe The Netherlands Calling! The developments in the Netherlands in the last years do not raise any hope for improvement in the future. After all those years it has become clear that solid medical facts alone will not be sufficient to win the “war against ME”. In 2005 the Health Council of the Netherlands, which almost completely consisted of proponents of the psychosocial school, published its “biased” Advisory Report for the Dutch Government: ME doesn’t exist, CFS has no biological origin, but must be considered a stress/personality disorder, biomedical research is useless, most patients can recover by cognitive behavioral therapy. The report trivialized, ignored or dismissed all available biomedical evidence. It can be found at: http://www.gr.nl/pdf.php?ID=1169&p=1. Although all state members are bound by international law (WHO), CFS was “not recognized as a disease” by the Dutch Minister of Health. ME does not even exist… Thanks to the combined effort of many (Dutch and foreign) patients writing politicians, supplying them with facts about ME/CFS, CBT/GET and “evidence-based medicine”, the parliamentarians “decided” that more than half the budget should be spent on medical research. The Funding Allocating Organization decided otherwise! Politicians did nothing to correct the “error” of the executive agency, despite conflicts of interest (e.g. allocating budgets to yourself/colleagues etc). Patients are represented by some organisations with a “good working relationship” with the Wessely-driven “Fatigue Experts” of Nijmegen University or who are unwilling to make clear choices, (e.g. ME/not CFS, Canadian Guidelines/not Fukuda or Reeves). The fact that there are almost no medical specialists dedicating their case to patients, means many ME patients do not feel to be represented. When the occasion arises (for example the publication of the very poor results of the Belgium “expertise centres”, implementing the “CBT/GET-paradigm”, and the publication of the Gibson Enquiry Report) patients write to politicians to plead for a fundamental change of course. The response of the new Dutch Health Minister to a petition, backed up by 20 pages of solid scientific facts, (for a summary see diagram Science and Fiction— below), didn’t address a single issue put forward: CBT/GET is the only answer… The dramatic situation of patients in the Netherlands will only change when scientific breakthroughs in the future can no longer be denied and/or when ME patients are represented by ME patient advocacy organizations making clear choices and organizing a creative, actionbased, international strategy. That's why the Invest in ME, MERUK and IACFS conferences are raising hope. Facts speak for themselves and will prove that patients were right all along. This article was supplied by Frank Twisk and Jan van Roijen Invest in ME (Charity Nr. 1114035) Page 18/34
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